JJ Update: IEP and learning with Apraxia

Traversing the landscape of understanding and intervening with Apraxia has been a steep learning curve for us. It would be hard enough, but then we have other kids with "stuff" that have their own steep learning curves. It is exhausting and often we do not know what the "right" direction is to benefit our child the best. One of those areas has been the effect of Apraxia on learning.

When we first had the diagnosis of Apraxia for JJ I knew that it's official name is Childhood Apraxia of Speech. I had thought it had mostly to do with speech. However, JJ's difficulty with speech is just a small part of what impacts him. So as he got to school age we started to realize, then research, how much his learning is impacted. Apraxia doesn't just affect speech, it affects "language." I have a friend who is a Speech Language Pathologist and when I first met her I had absolutely no clue that "speech" and "language" are two very very different things. Language is not just "grammar" like one would think in English class lol!

I found this way to described the difficulty of language, not just articulation of sounds, for Apraxia that I thought was very helpful to my understanding from www.speechandlanguagekids.com:

What is Childhood Apraxia of Speech (CAS)?CAS is a rare, neurologically-based speech disorder where the child knows what he wants to say but the message gets mixed up in the motor planning and execution phase so the sounds come out all wrong.

Imagine it’s like you’re driving your car and you know you’re going to turn right so you turn on your right turn indicator (or blinker).  But then, for some reason, your clock starts flashing instead of your turn indicator light (true story, I once had a car that did this).  So you think, “Well that wasn’t what I wanted to happen” and you try again.  This time, your trunk pops open!  Imagine how frustrating that would be!

That’s exactly how it is for our kiddos with CAS.  They know what they want to say and they tell their mouth to say it but it just comes out all wrong.

So, in addition to him not being able to speak the right words, he struggles with being able to "pull up" the right word. For example, if he wants a strawberry he can describe what he wants (e.g. I want the red thing, that is in the fridge) but usually can't actually recall or say the word "strawberry" (which is so odd that he can remember colors, "fridge" and other descriptive words but not the actual name. But think of the people that you know with the start of dementia who can remember things you have done together but might blank on your actual name). Now, if there were 10 fruits sat in front of him and you ask him to point to the "strawberry" he would do it without any delay at all. The problems is with "expressive" speech, not understanding the language. 

Therefore, imagine the extreme difficulty with learning how to read. He can see an "a," he can point to the "a" in a lineup of letters, but he cannot see an "a" and pull out of memory the sound for "a" and then say the "a" without a lot of mental effort. Not to mention that "a" has multiple sounds that must be remembered!

Then the next level is putting together multiple sounds. So he has to remember the sound for "b," then hold that in his head while remembering the sound for "a," and hold BOTH of them while pulling out of memory and remembering the sound for "t." Then put it all together at the same time. 

We struggled significantly with figuring out how to help him learn how to read. He didn't speak in a way that we could consistently understand until he was 5. So by age 7 we were still primarily focused on articulation so he could be understood, and trying to figure out how to help him remember letter sounds. Mostly we used a song and a corresponding picture (e.g. a, a, apple; b, b, butterfly). So then when he would see the letter he would call it "apple" or "butterfly." lol! Imagine trying to teach a kid to read when he thinks /a/ says apple:) 

So after a lot of struggling, a year ago at age 7 we decided to have him assessed by the school to see if he qualified for an IEP so that someone with specialized training in those areas could help him. It was a very hard testing results meeting for us to attend. He qualified in 7 areas. Of course all of them were related to reading - including math because some of the math required reading. (We also had him assessed at age 4 and he qualified but we strongly disagreed with their recommendations - that we could not be with him during services. And with his strong separation anxiety at that stage and the fact that he would not speak with anyone except family we sought private services instead (how in the world were they going to get him to speak properly when he refused to speak at all unless we were with him?!?) and turned down the school's offer. But since making progress with the separation anxiety we decided to try again).

The outcome of that meeting was him going to the public school 3 times a week for this school year for a couple of hours each for work on speech articulation, language skills (like understanding language concepts such as "over, under, etc" and being able to name items that are pointed to), math, and learning letter names/sounds/how to read. He also has an occupational therapist helping him with handwriting.

He has made progress in the past year and is now actually reading. It is still very hard for him and by the time he gets to the end of a sentence he often cannot tell us what the sentence was about because he has had to spend so much time decoding letter sounds/blends that he can't also retain the actual meaning of the words he just read. 

He hates it. I am not overly excited about how they are conceptualizing his issues as individual to him, rather I think they are trying to just put him in the "box" of their curriculum. But, again, I am not the specialist. But he really hates going. We told him that as soon as he can read well we won't make him go anymore. That has been his motivation - but it is taking longer than he wanted it to...

But, give the kid a math problem and he thinks through it well, and is right on track for the Math-U-See curriculum that we use for him at home. He is a very outside of the box thinker, is curious, and is not held back by "you can't do that" when he is trying to solve a problem. He has learned so much of this world by trial and error instead of "you should do this or that." I love how he thinks and once he can get reading mastered I think he can take on the world.

I strongly disagreed with their IQ testing of him, but even with that he qualified in many areas for help. I have been trained in IQ testing and have conducted many IQ tests on others in my early career. But even IQ tests are based on "norms" of the mass population. But every population has "outliers" and I believe JJ is one of those. I will never forget my graduate Ethics class being taught by a woman named Elaine. I can't remember  most of my professors in all of my college years but I remember her. She had a doctorate degree...and had Cerebral Palsy. As part of teaching us Ethics in our career she drove home "know why you do what you do!" She described herself as a young child who was tested for her IQ and the testers told her parents that she was developmentally disabled (not the word for it back in those days) and to just take her home as she would not amount to anything. Many parts of IQ tests are timed. For a person whose hands shake or it takes them time to articulate answers (it took Elaine a long time to say what knowledge she was imparting to us, but it was worth it!) - it does not mean that they do not know it! It means that you have to test them differently. I learned so much from Elaine and I am so thankful that her parents went home, dismissed the IQ tester's results, and just found other ways to get their brilliant daughter the opportunities that she needed to be all God created her to be.

After JJ's testing results meeting my heart hurt but I remembered Elaine and decided that we would let him go and get that specific help, but that JJ is not bound by what the norms on a test say make him in "normal limits" or "below average." I do not believe they see him any different than the test results, but that is just the reality we have to accept.

Two months ago we had the annual IEP followup meeting. They agreed that he has made gains, but I think they still really see him by his limits. In an effort to live by "if you don't have something nice to say don't say it at all" I will not say more on that.  So, I have been seeking other opportunities to get those gaps filled in for him. I have a couple options that we hope to focus on this summer. We will see what comes of it.

I am in the midst of trying to figure out what to do for home school for him for next year. He is not an auditory learner. Being as he also cannot read I often feel like some subjects that I teach are like trying to teach Helen Keller. She had a brilliant mind, but it had to be tapped into by people who loved her and didn't give up. So, I am trying to think outside of the box (not my forte). For example, reading him his history and science lessons isn't resulting in him absorbing any information. So for yesterday's science lesson I pulled up youtube videos on "hovercrafts" which he did have a short attention span for. When I noticed that he was losing focus I showed him videos of "hovercraft racing crashes" which renewed his interest lol! Then we watched the original footage of the Wright Brothers' first successful airplanes for history. Of course, then he asked for footage of ice hockey fights. The other day when we did this we pulled up several live streams of space satellites, baby eaglets, etc but he thought they were boring! Boys lol!

Most of the curriculum that I have is a "classical" style which is a lot of reading historical fiction, etc. I LOVED it with my oldest 2 and it worked great with them. With the Middles we had to switch it up due to learning styles but with 2 of them it was a good fit (until other issues resulted in us having to put them in a Christian, then public school). But it is not at all a good fit for JJ. So I am grieving this style of teaching and having to think outside of the box to figure out what will actually work with him. And then having to purchase all new curriculum (sigh). I know for sure a traditional classroom will not work for him.

Also, if you remember from the last post about getting him to sleep - I had to reward him with Fortnite every day that he slept through the night as that was the ONLY "carrot" big enough to entice him. I am so excited to report that he sleeps through the night all but a couple of nights a month all night in his own bed!!!!!!  Finally!!  After 8 1/2 years lol!!! Anyway, I have now added that he has to read a book every morning before he gets to play Fortnite. And for every book he reads he gets $1. Yes. It is a major reward for doing what, in my opinion, just needs to be done. But nothing with raising JJ has been easy...  I just keep adding on (not too much at a time that will overwhelm him and make his refuse to do any of it) more stipulations to his Fortnite time on things that are on the "you have got to do this" list (like reading and sleeping). But, yay to my husband and I for getting to sleep most nights through the night!!!

We will figure this parenting and CAS thing out:) In the meantime, I am so thankful for home schooling, for computers/internet/you tube, for tons of different types of curriculum options, and for a woman named Elaine who didn't succumb to the low expectations of an IQ tester but instead didn't give up-finding other ways to achieve her goals - that changed people's lives:)

A Thoughtful Conversation With JJ, and a Speech Update

Today my husband and I took JJ to eat at his favorite Chinese restaurant. In order to get him to be compliant with doing school (and knowing that it is extra hard for him to learn to read) he gets candy. I have pre-bagged his favorite candy into 20 bags (that are given to him for diligent work) and he was told that when he completed 20 days of school without complaining we would take him out for Chinese. That happened to be today right after his first session of speech therapy with his new Speech Language Pathologist. He completed the evaluation the last 2 sessions and today they started working. She is much different than the last agency we worked with, but we are very excited about the results of the language testing (he scored at or above "average" in all areas except for how he arranges words in sentences - the "Yoda speak" that we joke about). However, Language is different from Speech (I never knew that until I had kids with learning disabilities) and he obviously is very delayed in speech articulation. Despite that, she was very encouraging after even 1 actual speech therapy session today that he picks it up very quickly and will learn fast. She said that since he did not start talking until he was 4 he has to play a lot of "catch up" and if we thought about what we would expect from the speech of a 3 year old (with a child normally beginning to speak at age 1) that he would be on target.  Now that we have this evaluation we have started speech therapy again, and will develop a new plan for how to teach him how to read. That will mean more candy...and more Chinese food;) She did agree with the continued diagnosis of Childhood Apraxia of Speech but it is very mild at this time - he has progressed so much!!

My husband and I love to take JJ to the Chinese restaurant because he actually eats a ton of food and, for some reason, that place makes him stop and think - and ask deep questions. Part of me was so proud of him for thinking through issues in a deep way that is outside of the box. He obviously takes time to consider issues and I marvel at the way his brain contemplates things. Another part of me, though, is so sad about the topics that he has to spend time thinking about...

Today part of our conversation sounded like this:

JJ: Dad, why did you choose Mom to marry?

Dad: Because I loved her.

JJ: Oh.

Me: We loved each other so we chose each other to get married to. Just like we loved you so we chose you to be our son.

JJ: No you didn't. God did.

Me: Yes, you are right.

JJ: Why did my mom not raise me?

Me: Well, she didn't have a daddy to help raise you and she didn't feel like she had enough money and people to support raising you the way she wanted you to be raised. She loves you very much so chose our family to raise you the way she wanted you to grow up.

JJ: Why did you keep Beautiful and Buddy? They were in your tummy and you kept them.

Me: Well, I had Dad to help me raise them and we were blessed to be able to have enough money to provide for them.

JJ: And Superman, and Faith, and Grace. That is a lot of people! That must take a lot of money!

Me - laughing: Yes it sure does. You are all gifts from God and we love all of you.

Me: Your mom is married now and I just saw on fb this morning that she has had another baby a couple of weeks ago. So now you have 4 other siblings.

JJ: What is the baby's name?

Me: I don't know, she didn't say.

JJ: You should ask her.

Me: I will.

JJ: When do I get to meet my mom?  I know she lives a LONG ways away.

Me: Ummmm, some day we will go and meet her. We would have to fly there so it wouldn't be soon that we could do that.

*****************
Later at home when I showed him the picture of his new baby brother

JJ: Where is a picture of my mom?

I showed it to him, her husband was in the picture too.

JJ: Is that my dad?

Me: Ummm, no. That is her husband and the father of your youngest 2 brothers.

JJ: How is her husband not my dad?

Me: Well, she was not married to him when you were born. You have a different dad. The same as your older sister.

********************

JJ has asked questions before but not quite like this. And he has never asked to see his mom before. This topic is so complicated. Flying across the country to go see his mom would be a nice experience for him (I would hope). But then there are 3 other kiddos in the house who don't get to see their moms. I often second guess myself on what I am "supposed" to be saying to the kids, because each of their adoption stories are very different and I don't want one to feel worse than another from the story that I tell them. Hard stuff.

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In other news: JJ is doing awesome in math and moving quicker with putting consonants and vowels together than he did learning the sounds in the first place. I am hopeful of his continued progress.

He is still not sleeping well. In fact, since we have gotten back from Disney World it has been much, much worse. It is like he is terrified at night. He barely makes it a few hours in his own bed then he is back in ours with his arms around my neck like he is scared I will not be there. He used to crawl in our bed, warm up (he hates blankets and kicks them off all.the.time. Yet he complains when I make him wear warm clothes to bed in an attempt to keep him warm enough to stay in his own bed longer...) and fall back asleep without touching us at all. It is odd. I just know that I.am.tired lol!

JJ Update: November 2016

JJ has been making a lot of progress in many areas. I haven't updated in awhile in him so thought I would do so. 

Eating/Reflux: This has been much improved. He is gaining weight and getting taller. He went from vomiting into his mouth almost every time he ate to now maybe once a week!!!!!! We have had 2 interventions and I am not sure if it was one OR the other or one AND the other. He refluxed the other day and I looked at him in surprise and he looked just as surprised. He said that he hadn't done that in awhile and I realized that I had not noticed it in a long time either. It is one of those things we have lived with for over 2 years now so when it was decreasing I didn't really notice it. Therefore, I am not sure which intervention has made the most impact. We have been taking him to get chiropractic adjustments more frequently than he was before. That helped to maybe once a day or every other day. We also took him in for a very weird desensitization procedure with a different chiropractor. We had done with his breathing issues way back before he turned 2 if you remember all of his many sinus infections, RSV, etc that we dealt with back then. This procedure helped him immensely. So, we thought we would try it for this as well even though it is a different provider and it is done differently. They chiropractor said that he "tested" sensitive to calcium so he did a desensitization on it. JJ won't drink water, juice, pop (well, he will drink pop infrequently) but prefers milk. LOTS of milk. So if that was the culprit it would make sense even though the scope testing showed no milk "allergy." Whatever is causing him to stop refluxing we are just grateful that he has essentially stopped!!!

Sleeping: He has been sleeping, overall, better. When he was sick a few weeks ago he was back to being up at night and in our bed for about 2 weeks. Otherwise he is going much longer stretches with only coming into our bed about once a week. This has only been for the last couple of months but it is by far more than he has slept in his own bed all night than ever before. Yay!  Usually he has been going to sleep between 10:30 and 11 instead of midnight and if he comes it is closer to 5/6 a.m. Last night he came in at 1:30:( Then around 7 he suddenly grabbed me and yelled, "Mom! I had a bad dream!" and held on tight before falling asleep. He has been very off emotionally today so I think the bad night of sleep/nightmares has triggered that. 

Emotional Dysregulation: For the most part he is doing so much better. Where he used to have tantrums daily I am now surprised when they happen. He did have a big one this morning when he deteriorated into perseveration (repeating the same phrase over and over...and over...and over) for about an hour. But he came out of it and then just wanted to be held awhile. He has shorter "I want my own way" that all kids have but those longer ones are improving. We were in the grocery store last week and we had to get him out after he went into one, but it only last about a block of the walk home. I don't think he has had one of those public ones since July (that I can remember). That makes us very happy lol!

Speech: Sometimes I think he speech is really improved and sometimes I am totally lost. However, in really thinking about the dynamics of it, it is far more a problem with retrieval than a speech problem. He simply cannot retrieve words that he needs to describe his wants and we have to really be in tune with him to figure it out. He does not speak like other people, so his sentences are all jumbled. Add into that his inability to remember words so he will say "I want the white thing." When I press him for details/description if he can't remember he will say "You know, the white thing in the thing!" So not helpful lol! Today he lost all privileges for his tantrum and at noon he asked a question that made no sense at all. My husband, Buddy, and I all sat and listened to him and finally figured out that he was asking about what privileges that he lost. 

Last night I laughed hard when he was trying to tell me what bedtime story he wanted. I thought he was saying "zombie" which would never be a story that I would read to him, but he was actually asking for the Dr. Seuss  book, "Would You Put Me In The Zoo" that somehow with how he "paraphrased" it sounded like his word for "zombie" to me lol!

Finally - Social Interaction. Are you ready for this?!?!  He is GOING TO AWANA!!!! BY HIMSELF!!!!!!!!!  Of course AWANA is at our church, where he is familiar, and his 3 siblings are also in Awana and his big sister is a leader. But they are not in his room and prior to the first night he had never met any of the kids/leaders in his room. And he goes every week! AND he is remembering verses!!!  Paraphrased. And worked with with a very understanding Leader. But he is GOING! and PARTICIPATING! and LIKING IT! And LEARNING!  

Best news was saved for last:)

Update on JJ

I am not sure I am in the best frame of mind to be writing this post but I have a little time so here goes.

JJ met with the GI Specialist and he said that JJ was just fine. We met for a Feeding Study and the OT and Speech Pathologist said that as far as eating goes, JJ is just fine. They noted some sensory and OT issues. We met with the Neurologist. He was a very old man (I am guessing close to 80) and we very much appreciated his decades of experience and wisdom. He said that we could do an MRI but wondered what the point would be as it would not alter the treatment plan. We appreciated that he did not send JJ off for more testing where he would have to be put under anesthesia without a solid good reason. We felt like he heard us. He asked good questions. He was good with JJ. He said that JJ did have Apraxia - but that the diagnosis doesn't really give us any real information that would drive treatment - other than to continue Speech Therapy as that seems to be helping him. He actually had some things to say that were difficult to hear regarding prognosis. He diagnosed him with Rumination Syndrome, which I had never heard of, and we have been given the name of 2 Psychologists who specialize with that disorder.

After doing some research on Rumination Syndrome, we are using the techniques that we have learned and JJ is not vomiting into his mouth as much as he was. We can pursue the specialists if we can't get it under control ourselves now that we know what it is.

Neurologically I am very sad with the conclusions the specialist drew, and quite frankly am angry. I know JJ doesn't present that he talks much or engages, but once he feels safe he talks non-stop, is actually understandable most of the time now, and has so much personality and character that he is a joy to have around. One of the comments the neurologist said was that we may have to medicate him for his behavior within 5 years if he continues with the emotional dysregulation. After having the Middles gone at camp for a week and JJ having only 1 outburst it is clear that there is more to it than him just being out of control. Life in this house is enough to make ME emotionally dysregulated a good chunk of time lol!

Then we just got word 2 days ago that the company where JJ does his Speech Therapy is going to stop doing outpatient work. My husband and I had been considering for awhile having him stop as what they are doing with him are tasks that we could be doing ourselves. So while we were upset we have come to realize that if we just do what they were doing, and be intentional about it daily, then we can probably make better progress. We got lazy and left it to the Speech Path and she never gave us take home work, so we will just do it at home and later have him reassessed and see what he needs to work on next. JJ has made HUGE strides in the 18 months he has been in speech therapy. Most of them related to him feeling confident enough to express his needs if he has to, and feeling more comfortable with strangers. The articulation issues are what they are working on now, and word retrieval, but we can be doing that at home after watching how they have done it for the past 12 months since JJ actually got comfortable enough to talk during speech therapy;)

JJ has also been making big strides in making friends and being social. He stayed with a sitter last Thursday by himself and did great! He chose the sitter, the activities, and asked if they could stay at our house where he felt safe - but he did it! He also attended 3 days of VBS even though it required him to wake 2-3 hours earlier than usual (we did let him keep sleeping on Wed. I got him up and dressed but he was a limp noodle and just kept sleeping so we let him). Getting up early has not resulted in him going to sleep any earlier than 11:30 (partly due to late baseball and softball games - but partly because he just can't fall asleep any earlier than that. The Neurologist told us to not even try). He is readily and appropriately playing with other kids at the pool and other social situations. He isn't talking much with them in a group and still looks to me to answer for him. When people talk to him he mostly grunts and just stares at them. I try to understand what that looks like to others because in situations where he feels safe he never shuts up and is extremely animated... But last week he had his first individual play date (without his older siblings around to "interpret" for him) and he did just fine. The boys played together very well with no difficulty with being understood and I was intentionally not jumping in to clarify what he was saying.

I guess my Momma's heart is hurting to get discouraging news, but it is also bringing out the Momma Bear in me. JJ is precious. He is perfect just the way he is. He is adorable. He is hilarious. He is smart. He has so much personality and can "read the room." He is tenacious. He is kind, gentle, sweet, and so loving. He is thoughtful. He never forgets any idea (struggles with word retrieval, but he will never forget a rule or concept - and insists that it be consist every time!  I can get away with NOTHING lol!). He asks so many questions and wants to know how everything works. Sure he won't stop asking until he gets satisfactory answers no matter how inconvenient the timing. Sure he talks in sentences that are often times with messed up word sequences so it is like talking to Yoda. But he is JJ. He is unique and I love him to death. I refuse to believe the prognosis that was painted for him. He is a survivor and has parents and a family who will do whatever it takes for him to succeed. He was created by God who has a perfect plan for him just the way he is, not in spite of the way he is.

So...it will be well and I am going to focus on my son JJ, not what he looks like on paper and defined as some category, but as a created child who is full of possibilities:)


Yes, it is not lost on me that I was initially afraid that no one would believe us and they would say he was "just fine" but then he was given descriptions/prognoses that have made me say, "No! Darn it! He will be just fine!"  Sheesh, I need to make up my mind;)

JJ's Pediatric GI Appointment

Today we had an appointment with a Pediatric GI specialist. JJ has struggled with reflux since birth off and on, but it has been worsening the past 18 months (since he is actually eating regularly!) We decided to take him in to a specialist and see what may be causing it and try to fix it. We are wondering if it is related to the apraxia. We are also wondering how much damage is being caused and how to fix the damage or stop damage from starting.

I had prayed for specific things:
That the specialist would take the time to hear what the issues really are: The specialist was wonderful. He took a lot of time to listen to me, and ask questions that clearly showed he was trying to assimilate the information and work toward an accurate diagnosis and the best help for JJ.

That he would make an accurate diagnosis: There is no doubt that JJ has reflux. The problem is what is causing it. So...we have to go back in 3 weeks and have an upper and lower scope done where pictures will be taken of JJ from his mouth on through - along with biopsies taken to see how much damage has been caused already from the reflux, if there is a structural problem, and if there is an infection/disease/inflammation problem. So many "possible causes" were thrown out that have me terrified that I am not letting myself even go there yet. I am trying to just think about it as a "rule out" procedure.

That he would suggest a plan relevant for Jonathan (not just a cookie cutter approach): The specialist sees 3 areas that need to be assessed/evaluated before a final diagnosis(or more) can be made.  
1.   The problems are related to the reflux (his specialty), 
2.   The apraxia (so we have to go see a pediatric neurologist in May for a more formal and comprehensive evaluation and diagnosis from him of the apraxia and what all of the "systems" are that are affected by the apraxia (as it is not just his speech), and 
3.   a formal "feeding study" where an OT, PT, and SLP watch him eat and see what the feeding issues are. 

The specialist was concerned that I still have to feed JJ 90% of the time as he won't feed himself otherwise and then won't gain weight. We finally have JJ gaining weight but he is not eating "like a 5 year old should" both with quantity and feeding himself and not eating until the afternoons. He just opened up so many "possibilities" of what is wrong that I have not considered that my head is spinning.  So...all of that is very overwhelming but I completely agree with the reasons he thinks all three areas need to be assessed. 

That whatever the problem is it can be fixed and without pain for JJ: Today JJ had nothing invasive done and he was very happy. He knows that he has to have a scope next time though. They will let me hold him next time while the meds take effect to put him under for procedure. Then they will take him and I will see him again after he is woke up. I am already a wreck just considering it. Blech!

That JJ would be willing to answer any necessary questions, would not be scared, doesn't have any permanent damage already, and would be cooperative: JJ did great in the appointment and was very brave. After we got out he kept saying "I was so brave!"  (although it took me awhile to figure out he was saying "brave" lol!)  Of course, we won't know about any current damage until after the scope is done.

So, God did answer our prayers today. Thank you for those of you who have prayed:)

 It was a very hard appointment for me and I could barely keep it together emotionally afterwards. I keep thinking that we should have done this a long time ago. It is just too much information for me to assimilate about processes that I just do not understand. I am overwhelmed with feeling out of control. I have fear that they will find something bigger is wrong or that what we have been doing has been wrong. I am beating myself up that I have attempted to "normalize" his issues rather than aggressively seek consultation before now. The specialist was very kind, but it was clear that JJ is not developmentally on track on so many levels and he thinks we should have been in before now. I am emotionally overwhelmed but, like everything else that happens here, I will eventually just assimilate it as the "new normal."  It is appointments like this that make me feel utterly inadequate to have all of these special needs that we deal with. The learning curve is so steep to understand the new issues that arise and it stretches me way beyond my comfort zone and makes me fear so many unknowns. Then I beat myself up because it could be so much worse and I need to just be happy it isn't life threatening.

I have been reading about Joshua and trying to just trust in what I know that God told Joshua specifically, but imagine that He has the same message to all who He calls to something that stretches them:

Dt 31:7b Be strong and courageous
Dt. 31:8 It is the Lord who goes before you. He will be with you; he will not leave you or forsake you. Do not fear or be dismayed.
Josh 1:6a Be strong and courageous
Josh 1:7a Only be strong and courageous
Josh 1:9 Have I not commanded you? Be strong and courageous. Do not be frightened, and do not be dismayed, for the Lord your God is with you wherever you go. 

On and on we are told it as a command. He answered our prayers today. He has the final outcome in hand as well but I have a feeling He my sanctification is in the process and not the outcome (I hate it when that happens!!). I just need a little time to regain my footing and new normal. JJ is still our sweet JJ no matter what these diagnoses are, no matter what the interventions are, no matter if he is developmentally on track or not. God has the control, I do not, and today God is probably sitting back laughing at me saying, "one day you will finally consistently get it that you are not the one in control woman! Trust me!" 

JJ Update: January 2016

I am going to attempt to do monthly updates again on JJ and his Apraxia progress, as well as just how he is doing. It will also help to remind me that he really is making progress:)

Sleep: Until the last 2 nights, this month JJ has slept in his own bed ALL NIGHT LONG!!!! It is the longest stretch that he has ever gone! That led to much better restful sleep for me when I didn't wake at 5 a.m. waiting for when he would come crawling into our bed. The last 2 mornings he did come crawling in at 5. However, he had to go potty both times (he is not yet nighttime trained) so if he is actually waking to potty I am good with that:)

Wednesday he had speech therapy. He had woke himself up for the day at 7 a.m. (tough on a kid who usually wakes between 9:30 and 11). He fell asleep in the car on the way there, slept while I carried him into my work, slept on the floor while I worked for an hour, slept while I took him back into the car, and finally woke up as I was taking him into his speech therapy. When he is out...he is OUT. He wasn't very on top of his game there as it takes him so long for his brain to "wake up." He takes about 2 naps a year so I guess he got this one out of the way early lol! Amazingly he was still asleep by his normal time of midnight that night - yay for me!

Speech: He is working well with his new speech language pathologist (SLP). She is pointing out more and more issues that confirm that we are dealing with Apraxia. For example, he cannot say FACE, then say SAFE. He cannot switch between the words. Everything comes out as FACE. I won't go into the long explanation of what is happening in his brain when that happens (nor do I completely understand it) but it is further confirmation that his motor cortex just needs to be making new connections. Every time his SLP points things out like that I am infinitely grateful that we got the second opinion and did not just trust what the school SLP had told us.

He also struggles with word order and usage. For so long I just wanted to understand the "message" he was trying to get across. Now that I am understanding him about 95% of the time (no one else understands him that much, just me) I am paying more close attention to his articulation and word order, etc. Sometimes I have to stop myself from doing that because it is overwhelming for me to think of everything he still has to overcome.  I also have to stop and wonder if he is actually speaking clearer or if I am just learning how to "hear" him. So, I try to walk that fine line:)

Frustration Tolerance: This has been such a HUGE issue for him. However, it is much, much, MUCH less than it was. Last week I had to pick him up off the floor and carry him resisting me out of the church. However, by the time we got to the sidewalk outside he was calm enough to walk by himself home. He had wanted to stay and play and I said "no."  His tantrums are much less frequent maybe 1 - 2 a week (or less) instead of 4 - 5 day:)

  He also gets frustrated when I am correcting his speech (placing my finger on my lip with my bottom lip tucked into to model the /f/ placement). I would say that 90% of the time he will then correct himself rather than just say "NO! I don't have to do it!" Those percentages used to be opposite. It is the same with the /s/ placement. So, overall there is improvement:)

Eating: He is eating a lot more than he was. He is definitely growing:) However, he still won't feed himself. He is able to feed himself. And as independent as he insists on being it surprises me that he won't feed himself. But, as he is willing to actually eat the food I don't care how it gets to his mouth as long as he eats it! Last weekend Beautiful and her husband watched the kids while my husband and I got away for a night (I had an EMDR conference and my husband took the opportunity to take me out for an early birthday get away - I have a most excellent husband;). Beautiful fed JJ a bowl of Cheerios (we go through a LOT of Cheerios for JJ. He hates the honey nut ones) and he asked for more. She handed the bowl to her husband to feed JJ. Now, I adore my son in law and since he has had virtually no experience with kids except for our kids I am so thankful that he is as tolerant and wonderful with the kids that he is. Especially since JJ absolutely thinks he is the greatest thing since sliced bread. However, he is still learning about watching kids. Apparently he went and handed the bowl to JJ on the couch...and the couch got christened with milk:) Anyone in the world would assume that a 5 year old can hold a bowl of cereal and feed himself. But that just doesn't hold with JJ. Mostly, he cannot sit still long enough to eat the entire bowl so an adult holding it is just a good idea lol! My son in law felt so terrible about it. I told him that we knew better than to buy a "new" couch because we know our kids and knew this would happen. No big deal:)

School: with school he is doing very well with colors and patterns.So, I have moved into focusing on 1) letter/sound recognition, 2) fine motor skills of writing the letters, and 3) neural connections.  His SLP thinks that if we can get him to see/read the words he is trying to say that he will get the differences between /s/ and /f/ better. So...I am trying:) He cracks me up though as a lot of time he gets wrapped up in "bathroom humor" with the words. I just try to roll with it...and roll my eyes;) To address #3 I pulled back out the Dianne Craft books I used with the other 5 kids and we are working on brain cross overs to build neural connections. I know it helped with some older kids. We shall see if it helps JJ:)

Humor/Inquisitive Mind: Last night he really got me. He was looking through Netflix for a movie to watch. He saw one about some dogs getting married or something and I told him that it looked like a ridiculous movie and dogs don't get married.  He response, "if they can't get married how do they have babies?"  My husband looked at my face, which showed my shock with my face red and my jaw dropped, and just laughed at me and left me to explain. I am a strong believer in just telling kids how it is and being real with them about many realities in life - including how babies are made...but I just don't want to explain to my 5 year old the mechanics of...procreation! It was hard enough when Faith was reading the Lot story last week and asked me how two males were able to "know each other" since we have already explained the mechanics of husbands and wives "knowing each other." Also, we obviously have had to have a lot of conversations with the older kids about the reality that while God says to wait for marriage to engage in the behavior which results in procreation, obviously people can choose to engage in that behavior and not be married (hence their conceptions). But...I have not yet discussed this with my precocious 5 year old. Sigh...So I thought I came up with a good answer when I said that God created animals differently from people. We are able to think and reason and are made in His image, and therefore God wants us to be married before we make babies so we have families to raise up the children. But, noooooo, he persistently asked, "but how do dogs make babies." At that point I totally gave up, changed the subject, and distracted him by suggesting another movie. That was the cowards way out but that is what I did! Every time these conversations come up I flashback to my step-mother having The Talk with my step-sister and I when I was younger than 10. I was horrified and mortified and very much do NOT want that to be my kids' experience (although, admittedly, it was definitely Superman's experience - poor kid!). One would think by the 6th kid I would not be so shell shocked every time the topic comes up lol!

OK, that is enough for now. What started as a post about Apraxia progress has ended on a discussion of Birds and Bees...can I bunny trail or what?!?!

JJ Update: Misc and Apraxia Oct/Nov/Dec

Three months with no update on JJ...there is so much to tell!

JJ is showing huge improvements in so many areas. It is exciting to watch.

1.  Word Retrieval: I have learned that JJ's issue is not a struggle to learn, per say, but in retrieving appropriate words. He has learned all of his colors with 99% accuracy. Sometimes he messes up yellow. Now we are working on those difficult shades of colors when, depending on who you ask, it may be yellow...or it may be orange;)  We have moved onto shapes...he is getting it:)

I would say that, given enough time, he is able to retrieve the words he is looking for about 80% of the time now. The rest of the time he is now readily willing to ask "what is that again?" or "what is that I eat again?"  Sometimes after he asks the question he is able to answer himself before we figure out it:)  I try to find a pattern in the words he can't retrieve but there doesn't seem to be a pattern to it. One would think that it would be more novel or less used words, but sometimes it is words that he uses often (like cheerios). He will still ask "What I eat tomorrow?" which means "what did I eat yesterday that I liked?"  Sometimes he will ask "what I eat last time?"  Of course that is a very open question and we have to use context and him pointing to it, saying who he ate it with, where he ate it at, etc for us to figure out what the food was.

An example is that he loves corn dogs. He, however, cannot seem to remember the word "corn dog." So, he will ask "can I have one of those hot dogs with the stuff on it?" We always respond with "A corn dog?" to be sure that he gets feedback on what the word really is, but he can never retrieve it correctly. One of these days it will come:)

1a. Letter Retrieval: In October we started intentional home school preschool with him. In two months he can now identify A, B, C, and D (He still calls /e/ /a/ which tells me he knows the letter but can't articulate it correctly yet). We are soooo happy! Rather than teaching him the names of the letters, we are just teaching him the sounds for now. We have been told that will create less confusion for him as he tries to learn/retrieve only one piece of information for each letter (except vowels. We will deal with that later;)

2.  Pattern Recognition: Boy or boy is this kid good with patterns. He may not be able to retrieve the word to tell me what comes next (e.g. circle, etc) but he can show me. I think it comes from all of the video games and Kindle/Ipad apps that the kid plays with (although that is a "chicken and egg" question - maybe he is good at those because he is good at patterns?). He can't read but he knows exactly what button to push/swipe to get anything to happen. He is leaps and bounds beyond me in understanding those things.

2.  Frustration Tolerance: With his new found retrieval of words, he is MUCH MUCH less likely to have a temper tantrum. I would say that if he has one a week it is a lot (the full out screaming flailing tantrums where he needs to be removed to his room to calm down as he will not tolerate being in our presence to calm). Thankfully even in those situations he calms very quickly once left alone and comes back apologetic and peaceful. Grace ramps up in those situations so it is always surprising to us that he calms down when left alone. He did have one of his tantrums in front of my brother last month, but I don't think he has more than 3 since then. Since he used to have 1 - 3 day daily, it is a delightful improvement:)

2a.  Repeated Requests: Not having a full out temper tantrum is one thing. Repeatedly asking for something when being told "no" is entirely something else. This kid has the stubborn tenacity of a bull. He certainly teaches us that if we are going to bother to say "no" there had better be a good, detailed reason for it that goes far beyond it being inconvenient for us. He does very well with logical answers. He does not do well if it is inconsistent with something we have allowed in the past (unless there is a reason for the disparity).

3.  Articulation - I am learning the difference between articulating words and word retrieval. They are obviously very different but I never had cause to have to think about it before. His articulation is probably at about 90% of the time understandable by our family. I know that he is not understood at that level by people outside of the family, but it is delightful that we can understand him so well. In this category novel words are the hardest for us as we do not yet know how he says a word. However, I think that it is probably only 1 - 2 times a week that he asks for something that we cannot figure it out by context or other verbal/physical cues that he gives. With that said, usually he says a string of syllables and we catch the main words and then interpret what the rest of the words must have been. But it is still a huge improvement for him and makes him, and us, happier that we can communicate so well:)

4. Preschool: learning is not a problem for him. He learns information very quickly. However, being bored with a school task is a very big problem for him. We learned quickly that he will deliberately answer us incorrectly once he knows something and is just bored with us asking him again.  He soaks up information quickly and is extremely curious. Therefore, doing it the rote habitual way every day does not fly with him. I have learned from watching his speech pathologist work with him how to keep him engaged. I am thankful for her expertise.

5. Switching Therapists: that leads to the next sad news. He has had 2 speech language pathologists over the past 10 months. I am sooo thankful for each of them and the role they played in what he needed at the time. But now the organization has taken on a new contract and these two therapists will be switched to inpatient work and we will be getting a different therapist. God helped move my heart when we showed up 2 weeks ago and the new therapist was there since his current one had a medical emergency. So when they called me last week about the change I was able to know who the new one was and know that JJ worked well with her. Apparently she has even more training with Apraxia than the last one so I will have to trust God with his. I guess it was unrealistic to expect that we would have the same SLP for his entire 3+ years of therapy. I worry that he will backslide since the new person won't know what has been doing, but they assured me she would be fully briefed. It has just been hard to know that the one we started with (the one who diagnosed him, started with him, taught me so much about Apraxia, was so patient with him for the months he would only hide under my legs on the floor and barely engage her at all, and who prayed for him by name every night) will not longer be working with him. On the up side...are you ready?????

JJ HAS BEEN GOING IN TO THE SLP BY HIMSELF!!!!!!!!!!!!!!!!!!!!!!!!!!  Even when he met the new person last time!!!!  He knows where I am sitting and if he hears a noise in the lobby he opens his therapy door to see if I left him, but he is going into therapy by himself!  I can hear everything through the door and he seems to be doing better than if I were in there. He accepts her (their) direction without challenge. He is doing great:)

5a. Stranger Anxiety: In general he seems to be improving with his willingness to talk to strangers although still stares a lot or grunts his "yes" if someone asks him a question.  However, in a public place he only insists on my holding him less than 10% of the time - he is getting more comfortable! He has no problem tearing around the church by himself with 200 people milling about (that is not the greatest thing, but I am choosing to see the blessing in it;)

6. Sleep: ehhhh, still chaotic and unpredictable. He had a week about a month ago where he was not falling asleep until 1:30 a.m.  I changed up some routine for my own sanity (and need for sleep) and it has worked. Now he falls asleep in our bed (usually around 11:30), and I carry him to his bed and he sleeps usually until 5:30 - 6:30 when he come crawling back in our bed.  Today he actually slept in his own bed until he woke for the day!  I suspect he will be gone from the house before his sleep patterns actually look like any normal pattern.  The only problem for me is that my body now wakes me up at 6:30 anticipating he will be waking me and crawling in with us so I can't fall back asleep (I hate being woke up and if there is a chance of it I simply cannot fall asleep - it is quite annoying).

7.  Growth: He has been eating a fair amount for him. He is so excited that he can now almost reach the end of the tub with his toes when laying down in the bath. I measured him and he...has grown 4 1/2 inches in a year!!!!!!!!!!!!!!!!!  He has grown 2 inches just since May! He is currently at the 50th percentile:)  For so long we were thrilled when he was at the 20th percentile, happy that he was actually on the growth chart. I am so thankful for the speech therapy helping him learn to swallow better so he eats better:)  It isn't just an issue of swallowing, but the nausea that he seemed to wake with before doesn't seem to be as much of an issue. He hasn't gotten car sick in several months. He just doesn't seem interested in much food (wish I had that problem!).

8. Routine: JJ is all about routine. Not to the point of him being autistic like - but he likes his routine. For example, at bedtime: he must watch one Garfield (he can be persuaded to watch another short show if need be), then a bath with bubbles (a few drops of Lavender to get him sleepy;) and he insists on Epsom salts (yes, he is an odd child;),  with dinosaurs and other toys. After that he has a chair he must sit in while I feed him a bowl of cereal. He is willing to switch that up some but goes on long streaks. For 2 weeks it may be Kix, the Cheerios (hates honey nut - must be plain), or Chex. For 6 months he has refused sugar, but in the past few days he wants sugar again. Then he wants a glass of plain white milk (he was on a chocolate milk kick for awhile, but he is back to white now). After that he brushes his teeth, I put Essential Oils on his feet to help him sleep, and he crawls in my bed with a pillow and falls asleep. It usually takes him about 15 - 20 minutes to fall asleep most of the time. It used to take him over an hour. Sometimes it is even just 5 minutes!  Since it usually takes me over an hour to fall asleep I am happy with 15 - 20 minutes:)

He also likes routine with food. He likes it prepared a certain way, determines if he needs a spoon or fork with that food, 80 percent of the time he says "mommy you feed me?" He likes  "chicken" (all meat is "chicken" to him or he won't eat it) but it must have extra seasoning on the plate for him to dip the meat into (that is a habit we can thank his biggest brother for emulating for him;)

Changing his clothes in the morning is also something he thankfully will now do for himself, but he has a very specific plan on what happens, in what order, what gets worn, etc. Heaven forbid if someone actually suggests certain clothes for him to wear or not wear. I have decided that as long as he is dressed for church, I will not care what state of wrinkedness they clothes will be in. I simply got rid of the "every day pants" with the holes in them so he couldn't choose them lol!

9. Language: I never used to understand the difference between learning "articulation/speech" and "language." But, now I do. JJ has the most interesting ways of constructing sentences. We joke that he is like Yoda. I always find it endearingly cute, but I also always forget to write it down. It is like listening to someone where English is their second language and the verbs and nouns are not in the correct order for English. I don't think about it too much since it is just the way that he talks, but everyone now and again it will hit me how odd it is to others.

Even so, he has a grasp on a lot of "language" concepts that our Middles struggled with. For example, location prepositions. For something different in preschool one day I spent a lot of time asking under/over/on/below/etc questions. He got them all correct. It is fascinating to me to try to understand what he does understand and what he does not.

10. Why?  And, finally, his biggest change is that he has finally moved into the "why" stage. Fully and completely. Everything is met with a "why." And because he is so smart and so curious the answers required are much more extensive than we ever had to do with the Middles. He keeps us on top of our game;)


As I type this and focus on "language," I have to laugh at myself. After working with Buddy teaching him about Gerunds, Participles, etc I realize that I don't understand them, have no motivation to try to understand them, and probably drive crazy all of you English people who read this and see my many language errors. I never learned about them in high school and can remember a professor in Graduate school putting red ink all over my papers about "hanging participles." I still don't get it lol!  That all gives me perspective that no matter what JJ's issues are, his tenacity and desire to learn will get him wherever God needs him to go in life...even if he does speak like Yoda;)

Apraxia: Month 8 of Speech/Language Therapy!

I did not get to attend speech therapy with JJ for any of August, and just got to attend last week again.  My work schedule is busier than ever, but my husband was happy to be part of the process for a time.  I am feeling guilty just handing it all over to him feeling like I need to be the one involved.  It is part of my control issues I suppose:) However, I was feeling out of the loop and not noticing as much improvement with the craziness of the wedding, etc. However, after this session I was able to see a few more things that are different so thought I would share about that:)

Keep in mind that with Apraxia the actual articulation errors are only a small part of the symptoms that we deal with:)

First: his sleep issues are worsening.  Friday night he didn't even go to sleep until after 2 a.m.  We decided to wake him by 9:30 in the morning to offset things.  That switch has reminded me why we stopped that in the first place.  Because of the Apraxia affecting his REM (restful sleep, etc) and the speed at which his brain "wakes up," if he is woke up he does it veeeeeery slowly. He has to be held and rocked for 1 - 2 hours before he really wakes up.  That means that we can't get anything done.  I am remembering why we stopped waking him up lol!  He does like to take a HOT bath at bedtime and I put lavender in the water with him and he usually falls asleep faster that way:)  Once he falls asleep he stays asleep all night about 1/2 of the time.  The other 1/2 he wakes about 5:30 and crawls in bed with us.  That wakes me up and I don't fall back to sleep.  So after going to sleep at midnight or a little later after he finally falls sleep, and waking at 5:30 when either he wakes me or my body wakes me anticipating he will wake me, I have struggled with being tired lol! He also wakes A LOT more when he has bug bites that he needs "mommy, scratch it mommy!"

Second: Eating has been improved but still not anywhere near "normal."  Most of the time he may eat a few bites of food in the morning but then not eat much else.  After 10 or 11 p.m. though is when he really gets hungry.  The other night he ate a whole box of mac n cheese!  Of course I am not thrilled that the food he likes is box mac n cheese (I never used to cook it but my teenagers discovered it and...there you go!) He also rarely drinks anything, but will drink 2 glass of milk in the hour before bed.  The saying "you can lead a horse to water but you can't make him drink" certainly applies to him!

Third: Sensory issues - his car sickness has increased.  In fact he has not just been nauseated but actually gotten sick in the car twice in the past week:(

Fourth: Articulation- I think his articulation is improving.  We understand him better and others say that they understand him better.  He still says /s/ for /f/ when he talks, but as soon as I prompt him he will say it correctly (unless he is being ornery;)  The SPL states that she will start working with the /s/ sound with him this week to help him to know that some words actually do get the /s/ sound so he doesn't get the idea that no words have /s/ lol!

Fifth: Retrieval - this is such a major issue with Apraxia and he is doing SO WELL with it!  There are some words that he consistently doesn't seem to be able to retrieve but for the most part his vocabulary has vastly improved.  It isn't that he didn't know the words, but that couldn't retrieve them.  Now his retrieval of more complicated vocabulary with more syllables in improving noticeably.  This is wonderful!

Sixth: Social - JJ ROSE HIS HAND AND ANSWERED A QUESTION IN SUNDAY SCHOOL...TWICE!!!!!!!!!!!!!!!!!!!!!!!!   This is SOOOOOOOO huge!  He has never really acted like he cared what was going on in Sunday school.  He wanders around or sits on my husband's lap a lot.  We have been teaching his class for a full year now (the 4/5 year old class).  We were going through the days of creation and he raised his hand and gave a good answer that was as on track as any other kid in the class.  It was so precious!

He has also had much less stranger anxiety with less clinging to us. He will respond to people (using brief words) with they ask a question or we prompt him to give an answer.  YYYYAAAAAYYYYY!

Last Friday Grace had a dentist appointment.  The Dental Hygienist has been a sweet friend of ours for 17 years since we started going there and we explained JJ's stranger anxiety.  He watched Grace get her teeth "tickled" and ride on the chair.  Then...he got up there himself for a ride on the chair!  AND he let her look in his mouth and "count" his teeth.  AND HE LET THE DENTIST LOOK IN THERE TOO!!!  With the mirror instrument!!!!!!  Can I just say that this is AMAZING progress for him?!?!?!? When I asked him if he wanted to get his teeth "tickled" (he did touch the "toothbrush") next time he gave a resounding "NO!"  ;)

Seventh: Fine Motor Skills - We  had got a free app on the kids' kindles to draw Frozen characters. During church he pulled one up and drew a picture of the snowman!  AND it LOOKED like the snowman lol!  He still holds pencils/crayons very oddly but he is able to color inside the lines very well and does it carefully:)

With this said, when he moves one hand the other hand will mirror the same movement.  So when he moves his hand to color the other hand does too.  It is the same with scratching.  I think that makes the movement more exhausting and perhaps less effective.  That is my philosophy why he struggles with us having to scratch for him.  He will do it a little, but when tired he insists we do it.

Eighth: learning - he has always struggled with learning things like colors, letters, numbers, etc.  He can't do the latter at all yet but we are working on it!  However, in the past month I have noticed that he is getting about 4 colors down consistently!  It has always amazed me that he can learn how to operate an electronic device and play a video game competitively with his older siblings but he can't/won't learn those colors lol!

Ninth: attention span - he is loving me reading him CHAPTER BOOKS!  We have started reading Robin Hood (the classic kid version).  He sits on my lap a long time for me to read several chapters.  In fact, I have to get up and move onto a different project before he ready for me to be done!  That is very new and very welcome:)

Tenth: Spiritual  Jonathan has prayed to accept Jesus into his heart:)  Now, what that really means in terms of fruitfulness in his behavior is up for...watchfulness.  But it was a very sweet moment to share with my little guy as he asked and prayed with me:)

JJ Update: August 2015

It has been so long since I have blogged that I have all of these topics rolling around in my head.  I will try to tackle them one by one with the shortest first:)

JJ finished music therapy the beginning of August.  He seemed to enjoy it and likes music a lot.  He still wouldn't interact with the other kids in the class and even when they do the story time and the kids move 4 feet into the center of the circle he wouldn't let me remain at the wall - I had to be right there next to him touching him for him to feel safe.

But, there is a new speech therapist working with him (an associate of Ms. Erin) and JJ has been doing GREAT with her.  He isn't having any problems with interacting with her, responding to her, talking to her, doing what she asks him to do, etc.  He is finally feeling safe enough in that environment to do speech therapy like every other kid would do it.  She has added some occupational therapy components on recommendation by the OT who is also in the practice.

My work schedule has increased, so in an attempt to keep working only 2 days a week (except 2 weeks ago, and this week, and next week...oh who am I kidding) my husband takes him to Tuesday morning therapy now.  I miss taking him as I know that I follow through more during the week with the current therapy being worked on than my husband does, but for this season of life this is reality.  The new SPL is very pleased with JJ's progress.

Myself, I see his speech improving stalling a bit.  He still has to be reminded for the /f/ sound.  He doesn't spontaneously enunciate it properly (it is always a /s/ sound).  But as soon as I say "try again" he is able to identify in his own mind the word he mispronounced and do it correctly.  The SPL assures me that this is huge and should be encouraging to me.  He still struggles mightily with being able to sound out /f/ in the middle of a word, and some struggle at the end of a word.

While I don't see much improvement, Sunday we saw a friend we haven't talked with for months and she was quite shocked with his volume of speech, and said she could mostly understand him (even if some of that came from context).  So, that was encouraging.

I was also encouraged that on Sunday we attended a home school kick off picnic.  There were A LOT of people there.  I would hate to overestimate but I think there were possibly 130+ adults and kids there.  It felt like there were 100 kids alone.  Anyway, JJ took off and played with kids that I know he doesn't know.  With everything in the past year we haven't seen this group for a year, and at least 1/2 of the group was new.  Thus, these were strangers to JJ.  Yet, he ran off with them and while he mostly stood off to the side and watched the chaos of groups of kids playing, he did find some to play with and didn't require a sibling to be near him.  It was the best social improvement I have seen yet.

He is also feeling much safer at church.  Which means that he runs from me and won't stay put.  I guess that is progress in one way, but it is sure frustrating!

He loves to be read to at night.  He still needs me to lay with him at night.  Every single night he says to me, "will you sleep with me Mommy?"  Like something has changed in the past 5 years! But it is sweet that he always asks and doesn't take it for granted.  Then every night while we are laying there he says to me, "Mommy I miss you at work Mommy."  Bedtime is the one time he gets my undivided attention.  I love snuggling with him.  He has taken up a preference for having his back scratched.  I also see that as progress as he used to have such sensory issues and back rubbing or scratching was very uncomfortable for him.

Oh, he had a birthday this month too!  It was the week after Beautiful's wedding.  He was sooo impatient for his birthday.  They got back from their honeymoon and gift opening day happened to fall on his birthday.  Thus, the in-laws were here for gift opening...and we had left over wedding cake as his birthday cake lol!  It will have been the best decorated birthday cake he ever got lol!

He is now 5.  I am starting on some preschool activities with him.  He has so little interest that I have to keep it low key or he refuses to do anything.  He is starting to like to use a pen.  Thus, I have him use a dry erase marker tracing numbers and letters.  He likes to do that.  He still holds the pen extremely awkwardly and it shocks me that he can trace so well with that grip.  He refuses to hold it any differently.  I have asked the SPL what to do about that since there is an OT in their office she can ask.  They said to hold off for now.  He used to just do jagged lines closely together...but in the past 2 months he is actually drawing circles/bodies for animals/people!!!!!!!!!  I am very happy about that progression.

I am shocked with his cleverness.  The kid doesn't forget anything that he hears and he can argue a point so logically that I am left stunned that I have been outsmarted by a 5 year old.  One that comes to mind was over the weekend I was telling James and Faith to clean up their clothes.  Usually JJ is in there and creates a mess of what they are trying to clean so I asked him to leave.  He responded with, "this is my room too, why do I have to leave?"  Obviously the correct answer is "because I asked you to leave so you don't hinder your sibling's cleaning efforts" but his use of logic astounds me and usually stops me short.  If I give him one answer now, I can be guaranteed that he will remember it and use it to try to win an argument with me in the future if I stray even a little bit.  I am used to Grace who just screams mean things at me that aren't based in this universe much less logic, or Superman and Faith who just mutter under their breath but do it.  So, it takes me aback to actually have to come up with logical answers.  It is like raising Buddy all over again lol!  Oh, wait, Buddy still argues using logic with me!

This got much longer than I anticipated.  Off to another 12 hour day of work, and looking forward snuggles at the end of the day with this little guy who misses me when I am gone and continues to give me much enjoyment:)

It has been a good week!! and a kid update.

Yes!  An entire week has gone well!  I am not sure I can remember when the last time that was.  THANK YOU to everyone who has prayed for us.  Obviously it has made an impact.

Grace has had a week that has gone as well as we could ever reasonably expect.  I have been very pleasantly surprised that we have had no major issues (of course the...less than major ones continue).  We need your continued prayer for how to parent her and make future decisions.  I don't to go into too many public details about what we have been dealing with, but please know that it has been extremely difficult and this past week has been a relief.

We have decided that we need more help with her.  We are seeking people who are willing to meet with her regularly to just be a friend/mentor, offer us respite, and babysit.  We had to be gone today and we knew it was too much to expect Buddy to deal with all 4 of the younger ones, so we sought out a babysitter for Grace.  It worked better for everyone involved (we gave the babysitter some time to think through whether she is willing to do it again...but we sure hope so!!)  I think that it is an option that we need to continue to use regularly, especially with Beautiful moving away...

We took Beautiful to New Student Registration today!  Another step in "letting go."  I only teared up once.  Her class schedule is pretty good, I think.  Pretty much she has class from 10 - 3 with two 9 a.m. days of the week.  We hope it is only going to be 13.5 credits.  I got to see the outside of the house they are moving into.  I am excited for getting into the house and getting it set up for them.  I will miss her so much...

Yesterday we got her signed up for her online math class.  Now to figure out how to navigate that system (it is a different college and thus a different platform to learn).  Ai yi yi!!!

JJ is doing GREAT!  Remember when I have talked about how we have to carry him as he gets so fatigued?  He hasn't asked us to carry him in weeks - maybe longer (unless we wake him up, he really REALLY hates to be woken up and he isn't able to walk well right away).  Sunday night he RODE HIS BIKE for TWO MILES!!!!!!!!!  Yes!  Two miles!!!!!!!!  Last night he didn't quite have the endurance but he rode his bike/walked for 1 1/2 miles!!!!  My husband and I used to walk/ride bikes with Beautiful and Buddy all of the time when they were young.  We have a 2 mile loop we always walk and they did it with us.  That all stopped when the Middles came as it was much more like an exercise in walking headless chickens.  But now we are back to trying to get them walking and they did great:)

It was so much fun and very delightful to just listen to him on the walks.  The SLP has repeatedly told us that his constant movement is a way that helps him to retrieve language.  It is activating the motor cortex so that he can speak/retrieve better.  Wow.  He talked NON-STOP on the walks.  He kept up the cutest commentary the whole time.  I was so tickled!  It was like listening to Grace, whatever thought was in his head was coming out of his mouth lol!  It sounded something like this:

"There is a stick.  I rode over the bump.  I smell the grass.  There is a ribbit (frog).  Is that Mike's?  Oh!  I have to go around that stick.  I see a dog.  Oh my legs need a rest. Why do I have to ride on the side? (so you don't get hit by a car) but you are in the middle?  (to keep you from getting hit by the car lol!).  I don't want to fall in the hole (the sewer holes)."  It was so precious!  He is doing this more and more but it was so pronounced while he was doing this activity.

The other day Superman was putting his clothes away and JJ decided that he wanted his clothes to be kept in the drawers under his bed rather than in his dresser in my bedroom.  So, he kept up a monologue while he was carrying clothes back and forth and got them all situated.

He is getting so much more self-sufficient.  He is using the restroom by himself, goes outside by himself, dresses himself, gets his own popsicles, etc.  About the only two things that he really still insists on us with are feeding him (it is just too much to finish an entire meal when he has to not only do the fine motor skills of getting the food to his mouth but the intricate work that we usually don't think about of chewing and swallowing) and putting himself to sleep.  He is fully in 5T pants now!  I just can't believe how much he has grown in 5 months!  How much stronger he is!  How much more confident he is!

He likes to kick the soccer ball around and actually has pretty good aim, etc.  Last night while we were doing that he informed me that he wanted to play soccer on a team!!!!  When I informed him that the Middles were too old to be on his team and he would have to do be on one without kids that he knew he said, "but you will come and watch me?"  I said, "Of course I will."  He said, "OK, then you will be there in case I get hurt." and just went on with the game.  The kid who won't even let us leave him in Sunday School or Nursery wants to play soccer! Now, when it actually comes time to be without us, who knows what will happen.  But he is at least considering it!!!  Separation Anxiety seems to be improving somewhat too!!!

We were at a graduation in a building full of strangers a few weeks ago.  He had no siblings around him, yet he WALKED TO THE OTHER SIDE OF THE ROOM BY HIMSELF to grab some food!  I couldn't believe it!  He had to weave in and out of people to do it and he did it!  Yes sir, he is improving!

Monday he walked over to talk to the neighbor.  The neighbor has had a special friendship with each of our kids but JJ has appreciated him more from afar.  JJ actually walked over there (again, with no siblings around!) to have a conversation with him.  AND, the neighbor was actually able to understand every response that JJ gave him!  Yay!!

We have been singing nursery rhymes and playing London Bridges.  He gets such a kick out of it lol!  He is singing along with us (obviously he doesn't do it well, but he is trying!) and asks for London Bridges.

Another odd thing about JJ is that he has hated and refused to be read to.  He is now letting us (and sometimes even insisting himself) that we read 2 books at bedtime.  He is doing better with scissors.  He has such and incredibly looooong way to go with writing.  We got him a dry erase board with a fine pen and the board is lined to write letters one.  He makes the tiniest little chicken scratches and is not willing to let us direct him.  So, we will just be happy with all of the other gains and let that one go.  That has been hard for me as by the time Buddy was this age he knew all of his letters and was actively reading.  But...they are very different kids...

OK, I am just going on and on now.

Oh, I have SLEPT this week! Praise the Lord I have slept!  AND, I only had one headache (it was Monday night, it was very, very painful, but it was only about 5 hours and Tylenol did actually relieve it (and a dark quiet room).  I tell you I feel like a new woman!  I am getting so much more done around the house.  Big projects!  What a difference a non-sleep addled mind makes for motivation lol!  JJ has been sleeping in his own bed for a week and that makes such a difference to not have the little guy climbing in with us at 5 or 6 a.m.  He does this periodically - going about a week or so of staying in his own bed.  Then something happens.  Last summer was terrible due to chiggers.  JJ attracts them in huge numbers and then is up 1/2 the night begging ,"scratch them Mommy!!!"  I will be making up some EO bug repellent this year to see if it works:)

Last time I made comment about him wetting our bed and us being happy that meant he was drinking enough.  Oddly enough, he has stayed totally dry (not wetting his pull up much less his/our bed).  That actually has me concerned as I am having trouble getting him to drink.  I try to bribe him with smoothies and popsicles but mostly he just wants 2 glasses of milk at bedtime and doesn't drink the rest of the day.  Sigh...  He is one stubborn little fella...but we sure do adore him!!!

OK, enough of how well things are going.  Off to watch Superman play baseball!  I love watching him play!  His team is doing great:)

Apraxia Awareness Day! Session 13

Today is Apraxia Awareness Day!  It is an important day as many people do not understand Apraxia, and even more have never heard of it.  I had heard the name before JJ was diagnosed and knew it had to do with speech issues, but had no idea what it all entailed.

This weekend we found out about 2 more children within our wide extended circle who have Apraxia and are very young.  I really enjoyed talking to the one mother at a graduation for a long time and comparing the symptoms and issues.  I look forward to making connection with the other mom soon as well.

This week's therapy session:

His SLP was ecstatic that JJ was able to trace an outline of a fish AND then cut it out properly using a scissors!

He was able to match pictures of faces with different emotions - AND label them!! (retrieval)

He spontaneously sang for her! (intonation and retrieval)

He is learning the new songs and she does some "melodic intonation" work with him, and we are to continue that at home.  It teaches him to anticipate the next word, work on naming body parts (he knows them receptively, but this is an expressive/retrieval exercise).

He is able to make the /f/ sound (a blessing!!!!), but is very inconsistent with it.  We are to be working on making that more consistent...while not making him feel like we are hounding him and thus shaming him with the constant reminder that he is not speaking "right."  Not an easy task.

He seems to be getting more comfortable in therapy over the past 4 months (FINALLY!).  He does not hide behind me or under my legs as often and is staying on task longer at a time.  Thus, the sessions involved a great percentage of actual "therapy" and not just trying to get him to feel safe with her.

Last night Superman had his first baseball game.  JJ felt very safe and comfortable to be playing on the playground equipment right near where we were sitting (he had Grace and Faith with him).  He even let a total strange girl HOLD HIS HAND!  Now, granted that was not something we were really thrilled with...but to get that comfortable with a stranger so quickly was a first!

He continues to have full out bodily temper tantrums 1 - 2 times a day but we are understanding more of what triggers them.  Obviously the word "no" is a big trigger, but when we analyze it, it is more about us having interrupted his routine/expectation.  For example, when we got home from therapy yesterday it was the exact time that the school van was in the driveway dropping off Superman and our friends who take/bring Grace to school were right behind me.  I had 10 minutes before I had to get to work so I just parked on the street.  Grace had run to the van driver to get a hug from her (since she doesn't ride the van anymore and insists on hugging everyone in a 5 mile radius) so the van wasn't getting out of the driveway yet I had to transition to get to work and thought parking there was not a big deal.  JJ WOULD NOT get out of the car.  He would not even let me unbuckle him.  I wouldn't have cared if I was in the driveway, but being on the street I couldn't just leave him to run to the house as he could have then gotten out of the car and got run over.  So, I finally had to ask my husband to come and help me muscle JJ out of his car seat and get him into the house.  The whole time he was yelling (and flailing) that he wanted to be in the driveway.  He has his set routines/expectations for how things are to go and is pretty rigid about them.  He is NOT on the Autism Spectrum...but he certainly wants things to be a certain way.  Most of the issues we don't even realize until something unexpected like this comes up.  It makes us be much more aware of the importance of routine and structure for him.  Of course, he also has a tantrum when we tell him "no, you can't have a second can of pop" (at a graduation) or "no we are not buying a bag of chips at the concession stand."  Those issues can be addressed by us anticipating and discussing it ahead of time with him...but it is sure exhausting to try to anticipate all of his expectations lol!

He also gets really worked up with Grace is screaming at us.  He gets pretty hysterical and overstimulated and will start to also yell at us and get physically aggressive.  But...that is for another post on Grace that I have been mulling over.  Things have been very bad on that front...  

Apraxia Sessions 11 and 12: He is growing!!!!

The great news first...We just measured JJ since he is finally GROWING...and he is at the 50th percentile for height!!!!!!  We have always struggled to get him even on the growth chart, then above the 10th percentile.  The highest he had gotten before was the 25th. AND he is on the 75th percentile for WEIGHT!  Woo hoo!!!  Yay for improved ability to chew and swallow!!!  He has grown a full 2 inches since we started therapy!!!

Last session he was pretty active.  She started some musical components as a way to help teach him to separate phonemes.  Right now he is able to say words, but often times kind of puts the first sound (or his way of making the first sound) and the last sound all scrunched up together.  So "bow and arrow" sounds something like "bear"  (although he can't make a /r/ sound).  We are working on getting him to say each sound.

We understand him better than before, but we still need context and to know what he typically calls things.  There are words that he is able to say clearly like "good," "hi," hug," etc.  There are other words that aren't necessarily clear but most people could make out if they heard him.  Anything that involves more than 1 syllable is suspect though, and anything with an /f/ or /v/ or /s/ or /th/ sound.

It still takes him a long time to "retrieve" words.  He has some words and phrases that he has those neural connections firing very well and rapid.  However, when asking him novel information he still takes a long time to retrieve words and give answers.  That is part of why in public he won't talk to people and tends to just hide his head and not respond (beyond "hi" or "good").

The SPL states that some research has been done suggesting the using a stand up scooter may be helpful, specifically standing with the right leg and pushing off with the left leg to increase that neural activity in the areas he needs it.  We are looking to get a scooter now...it can't hurt:)

She also is looking for some research that she had seen that may indicate that kids with Apraxia may struggle with reduced REM during sleep.  That may be a reason that he is struggling with sleep so much.  We are waiting to see more of that research.  The sleep issues are the only issues that we have not found a direct Apraxia cause yet, other than the difficulty waking in the mornings due to the motor cortex taking longer than other kids to "wake up" along with all of the sensory overload issues in the morning (unable to eat, nausea, car sickness, being really cold, etc).

This week's session my husband and I both attended.  JJ was much more subdued.  I know that when you guys see him you see him usually silent and shying away from people (unless you see him at church lately - his one social place that he feels safe and comfortable...perhaps too comfortable lol!).  But at home he is a constant ball of energy, noise, movement, and speech (his way).  We have not figured out why some weeks he is very energetic and some weeks calmer at therapy.  I would think that once he feels safer there he would be more energetic every week, but who am I to try to figure out my kids lol!   The SPL is also using music to help him anticipate and retrieve words (singing the same phrase repeatedly, or just changing up one word like the part of the body, etc).

JJ is a very intelligent child and his receptive language skills are very good.  However, JJ is also a very stubborn child (and embarrasses easily) so getting him to be compliant to work on speech is difficult.  He would rather joke around and be a clown, taking the focus off of what he knows is not "normal."  That means that we work very hard to not push speech, encourage him when he tries rather than when it is said correctly, and try to make a game out of the teaching.

He still dysregulates about once every 1 - 2 days becoming physically uncontrollable.  He is triggered less often than he used to be.  It is a bit odd to watch the process.  He triggers and his amygdala goes into alarm mode.  There is then no "logic" that we can interject.  He pushes everyone away and is violent.  He goes into a verbal feedback loop during that time where he repeats himself for 10 - 45 minutes.  Then it is like a switch gets flipped and he goes to sobbing and clinging and very sad. Last Sunday was an example of how hard it is to read him.  Usually he is very difficult in Sunday School as we wake him to take him to Sunday School and he just wants to be held.  He did OK in Sunday School this week though.  But by the time we got to church I had to take him out 3 times.  I don't think I have ever had to take him out 3 times (usually it is not at all).  The final time we just walked home.  As soon as we got home he asked for a bowl of soup...he was hungry!  Since we are not used to him eating anything before 12 - 2 p.m. due to his nausea/sensory issues we weren't prepared.  Asking him to eat is always a tricky situation.  So, we just wait for him to lead or prepare food and leave it available for him to eat (he still insists to be fed most of the time).  I think that the chewing/swallowing/fine motor skill of getting the spoon to his mouth is just too much at once for him.  However, it seems that he is now getting hungry earlier in the day so we will have to figure out how to deal with that on Sunday mornings...   However, a lot of his behavior is also clearly mirrored after Grace.  We have been having a very, very terrible time with her lately and the frustration is only increased when JJ does what he sees her doing.  However, that is for another post as my blood pressure raises every time I think about what we are dealing with with her and I don't have time for that today!!

On to a lighter note;)

Today he asked for cookies.  I was delighted and said that we could make some together.  He informed me that he did not want to make cookies...he wanted Oreos.  Yes, this little tyke is in agreement that Oreos are America's #1 cookie lol!  He doesn't like chocolate, he doesn't like sugar cookies, but Oreos are his favorite (right along with his big sister;)

JJ is also all boy.  My other boys were not this..."boy."  He loves to belch and fart.  He thinks it is hilarious.  This is a new issue for me.  Lately his favorite thing to do is pee outside.  Yes, if you drive by and see my child urinating on the lawn...I apologize.  He has recently learned that one can relieve themselves (if male) while standing up and it has become a favorite past time.  Sigh...  As if the ninja moves, sword/light saber fighting, shooting, Super Smash Bros, and bow and arrows were not boy enough;)

Apraxia Session 10...and some fun stories:)

Session 10 was a bit crazy...I wasn't there!  The SPL had to move the appointment up an hour at the last minute and I had to meet with a supervisee...so Beautiful had to stop in.  Apparently he was not as cooperative as usual (not like he is ever really cooperative there, but the SPL manages him well) and Beautiful ended up bribing him with a box of wheat thin;)  So...nothing really to report lol!

I said I wouldn't post on every session, but perhaps I will continue to do so just to give a bit of a review of life of the week - hopefully more of the funnier side to life.

These past weeks have been insanely busy. My husband and I were gone all day Fri and Saturday again.  Sooooo thankful for the people who watched our kiddos!  The Friday conference was...difficult.  The Saturday one I spoke at on TBRI.  It think it went well.  I met some really amazing people and am so encouraged by the work they have put into have a strong support system of believers there to help with kids who come from foster care/hard places. Lots of love for adoption.  

We are making headway on the graduation plans, which is next Saturday.  I think we have it pulled together but my husband keeps reminding me that I do not have a diploma made for her yet!  Ugg!

Also in the craziness of life I was informed that I was dropped by a major insurance company as I didn't get some kind of paperwork in.  That really frustrates me as I thought I had it done correctly, but they make me do all of it online and we all know how good I am with that...

So, fun stuff...

Last night I had to go to the next town for work for only 1 hour so JJ and my husband came with me to run some errands.  Afterwards we went to a Mexican restaurant for supper.  JJ LOVED the chicken (he is such a chicken nut), the free chips in large quantity, and the music!  Oh boy did he like the music.  He just can't stop himself when he hears a beat and was standing in the booth shaking his booty and had his arms going too.  He was fully enjoying his Mexican experience!

We also discovered that he is apparently bilingual...my husband quietly asked me where the banos were and immediately JJ grabbed himself, started hopping up and down, and said loudly, "I have to go pee!!"  Fun times;)

It has been such a delight to hear him verbalize more and learn what is in his head.  He was in the fridge looking at food containers.  He kept asking me what things were and what they were for.  He grabbed the lemon juice and asked if he could try some.  I strongly suggested that he not so he asked me why we even have it in the fridge then lol!

Today I was at the computer and he was sitting next to me with his Kindle.  I got up to go to another room and he didn't see me leave.  He started yelling for me and came running and said, "Oh!  There you are!  I was scared!  I thought you left me.  I thought you went to work and left me.  I was scared!"  It was so incredibly precious to hear him say those words!  To have words of emotion!  We all know his intense fear of being without us.  Even at 4 1/2 he rarely will leave our side (although he is getting braver to go outside by himself much to our frustration...)  We know he has the fear but all he will do is cling to us and get dysregulated.  For him to actually put words on the fear was soooo encouraging!

Last "funny."  Today was Hair Day.  It took less than than usual due to her hair now being shorter, but it was still 7 hours straight of...hair.  When we got done we went for a walk - myself and the 4 youngest.   Superman picked up some garbage on the neighbor's lawn and Faith said, "I want to litter too!"  I tried to help her understand littering was actually putting the garbage there, not picking it up.  So she went from a different angle and said, "I want to do conversation!  How can I do conversation?"  I had to laugh out loud then and we practiced "conservation" versus "conversation."  It was funny...but I was so happy that she is clearly learning from her schoolwork and our dicussions on being a good steward, and she is caring about litter and "conversation"  ;)