I DID IT!!! I DID IT!!! I SURPRISED MY HUSBAND!!!!!! HAPPY BIRTHDAY - I GOTCHA!!!

Today is my husband's birthday.  My husband whose love language is Gifts but is married to a woman who does not even have gifts on my radar.  I don't think about them.  When I do think about gifts they are ALWAYS a practical gift.  I do not like spending money on something frivolous or having something laying around that is useless and pointless.

However, those kinds of things are important to my husband...darn it.  For almost 20 years of marriage he has put up with me forgetting or minimizing all kinds of birthdays and anniversaries.  For Christmas I try to think of a bigger practical "family" gift.  A few years ago I got him a used 4-wheeler and told him it was worth years of gifts.

For 3 years (maybe longer).  He has been asking me for a gift.  A very impractical gift.  A gift that I just want to roll my eyes about (Ok, I have rolled my eyes about).  He finally gave up asking - a year ago.  My husband who loves to hunt and fish and does taxidermy (more as a hobby than as a job anymore with our busy lives) loves wildlife.  I try to think of practical things like hiking as a family, etc.  But...I know that he really wanted this particular gift.

In December when my mother in law was so sick right after her second leg amputation I spent some time thinking about how I have dishonored my husband by not being more welcoming about gifts.  I have actually told him not to buy me certain gifts (like flowers) because they are pointless.

My husband is incredibly thoughtful.  He intuitively knows what kinds of things will bring a smile to someone's face and make them feel loved.  He LOVES surprises and one will never know when he is up to something.  I haven't been able to surprise him since his birthday BEFORE we got married!  He always figures it out ahead of time somehow!

When his mom was sick and we are in the car traveling back from the hospital (ahhh. the sweet quiet car) I was telling him that I was so sorry for how I have not honored his love language.  His answer really convicted me, he said, "what I am really sorry for is that because you deny me this, I could not model well to our 14 year old son how to treat his future wife well." (in this love language).  OUCH!

So, I set upon thinking what I could do to really surprise him and honor his love of gifts.  I remembered that he wanted this particular gift and I set up finding out how to get it.  When I told the teenagers about it they were so excited!  Our 14 year old's first words were, "Ha!  You are going to out give the giver!!"  Yes!!!  It is custom made and the person who makes them moved...to the next state!  However, I got a hold of him, he made it, he delivered it, and...

I SURPRISED MY HUSBAND!!!!!!!  ON HIS ACTUAL BIRTHDAY!!!!!  I CAN'T BELIEVE I PULLED IT OFF!!!!!

And, in the process, I discovered that I like the secrecy and the thrill of surprising someone with a well thought out gift that touches their heart...even if it has absolutely NO practical value;)  Hmmmm, this may become a trend...

Apraxia: Session 4 and a Trip to the Park:)

Last week we had our 4th Speech Therapy session.  We did not have therapy this week.  I just haven't gotten around to blogging about last week.  I have been encouraged by several things.

The session went fairly well.  I learned a couple of new things.  First, she was very encouraged that JJ can look at someone's lips/tongue and attempt to make his lips/tongue to do the same movement.  I had seen in the research on Apraxia, and our SLP reiterated it, that many kids with Apraxia cannot "mirror" another person's mouth movements.  That makes treatment more complicated.  But since he is able to do it (not that he does it well, obviously, or he would be able to speak clearly!) means that his interventions will be a little easier.

Secondly, JJ does what the SLP calls "attribute naming."  That means that he doesn't "find" the actual name of things so will name it by it's attribute to get his point across.  This is why he used to refer to pants as "pockets" and still refers to Darth Vader as "Ku Ka" (that is what he thinks the sounds of his breathing sound like lol!).  I have kept this in mind as he talks to me so I can figure out what he is referring to.  Today he wanted the "blue chips."  I finally figured out that was referring to the bag color.   He kept pointing to his shirt to indicate the correct color for me.

He has been eating a lot of Chex cereal lately.  I could not figure out what that word was and he kept running it together in a whole sentence with other words that I didn't understand.  Finally he took my hand and took me to the cereal.  I had him say it over and over so I could remember what his word for "Chex" is and don't have to get he or I frustrated next time.  I will admit that I was impressed that I got more frustrated that him this time.  That is progress on his part:)

In light of attribute naming, last night he said a word that had the word "sack" in it.  I could not figure out what he was talking about.  My husband, Beautiful, and her fiance were all sitting there as well and we all kept asking him to help us understand.  Finally he pointed to his nether region.  Oh my.  I laughed so hard and so long my stomach hurt and my water proof mascara was smeared all over my face.  All I could think about was "attribute naming" and how mortified that I was that he said what he did, and what if he said it in public?!?!?!?!  I have a feeling that I will be plenty embarrassed in the future with his words but that one just slayed me.

Moving along...

The third thing that the SLP pointed out to me was how JJ rolls and almost writhes when he is asked information (when he is not hiding behind me and giving the "stare" but is actually attempting to retrieve words to say).  She said that it is part of his body moving in an attempt aide in the recollection.  The movement is necessary for him and we are not to try to stop it.  I had not really thought much about it before other than thinking often that it seems like he is almost trying to hide "in" me (like he rolls against me like burrowing if that makes sense?) to get away from people.  Now I understand it is the sensory stimulation overload of interacting with strangers/novel environments as well as the embarrassment that people often ask him to repeat things and he knows very well at 4 1/2 that people are shocked that he cannot respond appropriately to them so he just is silent and retreats.  I am so glad that she told me about it as I was so embarrassed that he kept trying to hide under me (we were sitting on the floor) and was burrowing and rolling and rocking under my legs.  He is so utterly "shy" of other people.  I am starting to understand it more as him not being able to find words so he retreats into me as his physical safety.  He seems so scared of people interactions with strangers - and I am trying to understand the balance between his fear and his sensory overload so I know best how to intervene and help him.

Yesterday afternoon the Middles went to a movie at the library so I took JJ to the park.  He had a great time walking around, but was initially quite scared to go down a slide (the whole "going down rapidly" thing he can't handle sensory wise).  He actually used the words, "I'm scared."  !!!!! Several times!!!!  I was so happy!  Whenever we got close to playground equipment that had a few other young kids playing on it he would refuse to go near at all and would head in another direction.  That happened 3 times.  Then we played on some equipment and a younger girl that we know (I am not sure if he actually remembered her or not) came up and boldly wanted to play with him.  He left.  She followed.  He left.  She followed.  He went down the slide (after having me at the bottom to catch him a few times), then she went down.  And he stayed there!  He actually sort of engaged her a little bit and didn't run away!  When he went walking around the outside of the pool she followed with us.  She got around first and went back to her mom so that when JJ got around the corner he didn't see her.  He actually ASKED "where is her?"  He saw kids on that playground equipment and asked to go to another one, but wanted her to come with!  So, we went up to her and, of course, he tried to hide and wouldn't talk but wanted me to ask so I did and she came to play with us.  Ahhhh, it was a sweet hour of progress:)  I am tearing up just thinking about it.  I am so thankful for that tenacious little girl who insisted on playing and did not give up just because he was very wary and wouldn't directly engage her.  Thanks to the mom for sharing her for a little bit!  It made my afternoon!

I was reminded in that interaction how he avoids people.  It made me appreciate even more that we stuck to our guns when the school told us that he would be best served if he were to just be forced to attend their Preschool without us present.  There is no way that JJ would be able to handle that kind of sensory overload.  And them telling us that if he were there and had to talk more that his speaking would improve?  As if "socialization" is his problem and being thrown into sensory chaos would help?  As if we do not require him to speak at home and his lack of "opportunity" to speak is his problem?!  Uggg.  I am still angry about it.  But I am thankful that God directed our path elsewhere and we were stubborn enough to advocate for what we believed was in JJ's best interests.  I am sad when I think of other kids who have sensory issues and they are forced to be in those situations.  I am so thankful that God has provided a situation for us that we are able to keep JJ home with us.  I believe firmly that it is to his benefit, not his detriment, that we have made the choices and sacrifices we have for him (and the other kids).

I am also well aware that other people don't understand it.  Some because they don't take the time to understand and some because they don't even think to ask the question.

3 summers ago we went to DeSmet, SD to see the home of Laura Ingalls Wilder and the museum there.  We were in a tour group with a girl who clearly had Autism and was self-soothing/stimulating with a small book in her hand.  The tour group leader was rude to her, kept asking her if she was paying attention (because the girl was looking at the book), and did not seem to understand at all that the girl did not need to forced to be in the "mold" of a good tour group attendee.

We talked about that guide's behavior with the kids and I have not forgotten it.  Mostly because I experience the same with JJ's and Grace's behavior.  JJ is now getting to be of the age where carrying him and him refusing to answer people is not just seen as "toddler" and thus acceptable behavior.    He is 4 1/2.  He is "supposed" to be able to walk and talk "normally."  He is supposed to be able to respond respectfully to people when they engage him.

Just yesterday we were somewhere after JJ has walked 6 blocks.  After standing still a bit he asked me to hold him.  I was so happy that he made it the full 6 blocks and knew that he was in a social situation seeking comfort (we had asked him to say "hi" to this person whom he knows very well and he slid to the ground behind me clinging to me and wouldn't respond) and was self-soothing.  Our friend said in a not as compassionate voice to JJ that he has feet and should walk himself or he will hurt my back.  I just smiled and kissed JJ's forehead and held him tighter.  Our friend is a wonderful person and I know meant absolutely no harm by it.  But our friend does not understand, nor have we taken the time to try to explain it.  It is not their problem or burden.  JJ "looks" every bit the healthy child, why should people even consider that he has an invisible motor cortex dysfunction that makes all movement exhausting and sensory situations overwhelming?

It is helping me to make a commitment that I am going to try my hardest to not make assumptions about "why" people do what they do. Sometimes there are a lot of unknown and invisible reasons that are very, very good as to why things are the way they are, and if we are going to judge before we take the time to understand it is a sad statement back on us.  I would wish for people to ask us why we do what we do before they judge, so I need to be careful to do the same.

I am hoping that JJ's situation will help me to be a more compassionate and less judgmental person who is willing to be thrilled with small successes.

I have been so happy with JJ's progress in the past several weeks.  By us not requiring that he name things, but always speaking out the complete options (e.g. "do you want the blue bowl or the green bowl" instead of asking him to retrieve previous information "which color bowl do you want?") he has made huge gains in his words.  He is saying more words in way that we can understand (repeating and watching our mouths) and his vocabulary seems to have increased.  He has also been much calmer.  I have noticed that his temper tantrums are a bit complicated - they are in response to frustration tolerance (being told "no") or sensory issues (being around a novel and scary situation or being hungry).  A lot of times he gets so angry when hungry but doesn't seem to understand that he is hungry.  If he eats he gets so happy, but he doesn't seem to know that that hunger feeling means eat and you will feel better.  He has been eating a lot (for him) in the past several weeks and that may be one reason he seems calmer and happier as well. He has also slept through the night about 85% of the time! Praise God!

We are very pleased with his progress and are trying to grasp the lessons that God is teaching us as his family along the way as well:)

Update on Grace: The Good, the Bad, and the Struggle to Not Become Hopeless

ADHD is a very disruptive and difficult disorder.  I have often mused how the criteria that I use when I diagnose people with ADHD are so sterile and concrete.  Living with a person with ADHD is chaotic, overwhelming, maddening, and...at times it feels hopeless.

I have talked with several people over the past week, and read a blog post from a sweet friend, about the topic of hopelessness.  I have been struggling with it for years and certain events occur that bring it more to the fore.  I am usually able to beat it back eventually, but lately I have been hit hard from a variety of directions and hopeless I have been for awhile.

6 weeks ago we decided to put Grace in public school because her oppositional behavior was constant (at least 95% of the time) and it was preventing her from learning and the other kids from learning, or even feeling safe or calm in their own home.  It has taken a bit of an adjustment but we will all tell you that we are so thankful that we made this decision.  Grace LOVES, LOVES, LOVES going to school.  She loves that she gets to play and be with people.  I don't know that she is academically improving but she wasn't here either.  We will see what the standardized tests indicate at the end of the year.

After 6 weeks, life at home during the day has become remarkably...calm.  The house is quiet.  Kids actually venture out from their bedrooms and join everyone else to sit quietly at the kitchen or in the living room to do their school.  The constant tension is more intermittent (we still, of course, have JJ to content with).  It is what I hear from other home school moms that a day actually looks like.  I am struggling to remember back to when we just had Beautiful and Buddy when I actually got to engage with the children and do projects and fun things rather than just discipline all.day.long.  I have been finding the energy and motivation to deep clean the house and take pride in my home again.

Two weeks ago Grace was...I am not sure that I can even put words onto what she gets like.  No one would believe me if they just saw her "public" behavior.  She is a different child at home.  The easiest way to talk about it is pure contrary and oppositional behavior at every moment.  There are times of reprieve, but they last minutes to a couple hours and are not daily.  We realized at the end of a terrible week with her that we had run out of the supplements that we use for her neurotransmitters.  I didn't realize we were out until we were out, then it took time for them to ship.  She has improved (meaning longer stretches of more compliant behavior) in the past week since they came in.  Last autumn we increased her ADHD medication.  It has been 4 months and there has not been one single noticeable improvement.  However, there is clearly improvement from the neurotransmitter supplements (and she is equally terrible if she doesn't get her ADHD meds - it is just that the increase in dosage provided no decrease in behaviors).

The day after she got back on them she and Superman were playing "Ninjas" while I was trying to keep them in the basement with me while 3 kids were still doing school upstairs.  Apparently in playing Ninjas, Superman caught Grace and went to put her in "jail" in our bedroom.  In the tussle they tripped and he landed on her, but she landed against the metal bed frame and ripped a gash in her lower back.  I yelled for Beautiful to help who stopped the bleeding while I called the clinic (thankfully it was 5 to 5 and they were still open!) and went to deal with Superman.  Superman is an extremely sensitive child and he was hysterical.  I found him in his bedroom rolled into the fetal position sobbing and repeating over and over that he had hurt his sister.  I just held him, made him look me in the eye, and repeated over and over that I loved him and that he was not in trouble (although they know not to play in our bedroom the accident could have happened anywhere).  I didn't know what had happened then but I knew there was no way that Superman would maliciously hurt her...or anyone for that matter.  I knew that Superman would retreat further into himself if I didn't handle that immediately.  So, after 5+ minutes of reassuring him we got Grace to the clinic and got her 10 stitches done.

The next day she already popped one stitch.  By Wednesday it was 4.  Thursday we went to the clinic to see what could be done as she kept unraveling the stitch by not being still.  Ha, this child cannot be still.  When she next gets stitches it will have to be tied off each stitch.  Her last 7 stitches in her toe months ago only had 3 left when we went to have them taken out.  Sigh...

We did that in the morning, then took her to school in the afternoon.  When she got home she was hyper and wanted to ride her bike.  We told her that it was not OK for her to ride that day since the steri strips had just been put on a few hours before (Grace on a bike is anything but sedate and calm).  She was not happy with us and just ratcheted out of control.  The things she screams, the constant back talk, the putting her fingers in her ears to not listen to us is maddening.

So, we did something we had not done before.  In the middle of it, my husband and I retreated.  We fed the children, separated them all, apologized to Beautiful and left her in charge, and left.

We were utterly hopeless.  Nothing that we do seems to help.  All of the money, time, new ideas...nothing seems to make it better.

We went out to a new Mexican restaurant that we had not gone to before but had heard good things.  And we talked.  I don't know that since having children we have ever gone out to eat (due to where we live going out to eat means driving to the next town) and just ate and come home without running errands.  But that is what we did.

We talked through her behavior.  We talked through what we have tried before.  We talked through what we can attempt in the future.  We talked through what is realistic given everything else that we have to do.  And we came up with a plan.

At a minimum it gave us a glimmer of hope that maybe this time it will be manageable.  Time will tell.  We came home and held a family meeting telling everyone what the new plan is and to ask them to help us implement it.  It will require the help of the other kids.

Essentially, the new plan has to do with frequent (every 30 minutes) rewards for not opposing us in the prior 30 minutes and hourly intentional sensory stimulation. Consequences mean nothing to Grace, as every parent of an ADHD child will tell you.  ADHD is a disorder of time.  The past (thinking, "oh, I got in trouble for that before I shouldn't do it again"), the present (they are so impulsive that they do what they want while thinking it - not gap time to consider if it is right or wrong) or the future (oh, I will lose that if I don't obey) are time concepts.  So, we will hope that 30 minute rewards will be effective.  We are not even 24 hours into it and, so far, we have behavior from her that is less than the type that makes me want to pull my hair out and beat my head against a rock wall.  She is outside riding her bike right now.  Her steri strips are already ripped off.  But, this child just cannot be still and the sensory stimulation keeps her calmer so ugly scar or not (it is healed shut, just not pretty) it is what it is.

We hope that this will help.  On the one hand we keep wanting her to get older to mature and get some control over herself.  On the other hand I work with a lot of ADHD kids who are older and it is not better.  I struggle with not getting hopeless while imagining her at 10, 12, 14, 16+.  I keep reminding myself that I have to stand before God and giving an accounting for what I have taught her, not what she has actually learned.  That is between her and God.  But God sure did give her to us for a whole lot of our own sanctification work to be done and not for calm and ease lol!

She is a constant reminder that our Hope is to be in Him and not in anything in this world.

I was irritated with my Husband today...

This has been a busy week for me.  Monday I worked 11 hours (it was supposed to be over 12 - I was so glad to get home early!).  Tuesday was only an 8 hour day.  Wednesday was the day of speech therapy that was...exhausting.  Thursday we went bridesmaid dress shopping.  At least that was the original plan...

On our way to pick up our friend who is doing the wedding decorating, Beautiful and I decided that we need to plan for her graduation lol!  So, we spent the trip to shop going over with our friend the plan for colors and decorating for graduation.  Then we went to a store and bought the paper products and other such things necessary for a graduation.  After planning for the wedding, the graduation party seems pretty minor.  That means that I will probably end up not giving it the attention it needs and something will go wrong.  But we will hope not!

Then we ate to gather our energy for...dress shopping.  Beautiful finally decided on a color for her wedding, and then tried on the dresses herself.  It wasn't too hard to pick one out.  But...our friend insisted that I have "fun" and try on "mother of the bride" dresses.  I seriously had planned to just find something a week before the wedding and not give it much thought.  90% of my clothes are hand me downs or from very discounted Kohl's racks.  But, I agreed to the endeavor to be in the spirit of the day.

We found some dresses...well...my friend found me about 25 dresses to try on and re-try on.  Finally we agreed on one.  It was fun as Beautiful was trying on some fun dresses too.  We made some very silly and happy memories.

And I ended up buying a dress that cost at least twice as much as I have ever spent on any item of clothing in my life (bar her wedding dress).  My husband was a bit skeptical about it.  I still haven't shown him the dress.  I told him that I wanted to get really dressed up when he saw it so he would see that it was worth it lol!  He remains skeptical;)

Then we went shopping for the flowers - another DIY project...  If anyone enjoys doing floral arrangements and would like to help - let me know!  Please!

I was so tired when we got home over 10 hours after we left the house.  It was necessary, it admittedly was fun, but it was exhausting!

So I had planned on getting some deep cleaning done yesterday.  But by the time I got off the treadmill, drank my protein shake, and got life settled...JJ woke up.  He was particularly clingy yesterday so I ended up rocking him for 2 hours before I actually got to get anything.

My husband was at yet another surgeon appointment with his mother (her leg still is not fully healed:(  Thus, he was not around to help keep life moving forward.  The house was quiet in the afternoon (a very rare occurrence) so I took the opportunity to do paperwork, call insurance companies, etc.  I ended up getting a lot of paperwork done!  But not what I had planned.  I really would like to find our kitchen table and counters.  It would be a helpful project to get done;)

So...last night my husband asked me what the plan was for meals for the weekend.  We agreed on Cheese Broccoli Soup.  Normally we don't put a lot of thought into meals (unfortunately).

This morning we woke at 7:30 and instead of me getting on the treadmill right away we spent an hour talking about things we having going on.  JJ has actually slept through the night for 5 nights in a row so not having the munchkin between us in the morning allowed for some actual real conversation!  Grace came in and out several times and seemed to be a bit subdued...By late morning we understood why...she is running a fever:(

Anyway, I got my work out done and my husband asked, "when are you going to start the soup?"

I told him I would do it later.  I took the step this morning (far over due) to meet with someone to help me with paperwork.  I got that done around lunchtime (just in time for me to finally drink my breakfast;)

He asked, "when are you going to start the soup?"  I am thinking it is lunchtime - I will start it later since it is too late for lunch now.  The kids ate leftover something or another...

I had a table in the basement with a bunch of paperwork on it that needed to be filed/shredded.  My husband said he had to get picture framing done today so I needed to clear that table.  I promised that I would have it done in 1 hour (never mind that it has been sitting there since Christmas waiting for me to get it done...)  He laughed and said that if I didn't have it done in an hour he was going to go to Cabela's today.  I couldn't let that happen, so actually stayed on task for an entire hour and got it done!  It's not like my husband knows me or anything, that I would like, be distracted by things and not actually complete a task...or anything...

Grace sat near me and helped to keep me on task.  She is pretty much just laying, not talking, not moving.

At 1 my husband came back from running errands and was teasing me that the pile of paper to be shredded meant that I wasn't done and he got to go to Cabela's now.  Then he asked, "when are you going to make the soup?"

I decided that I needed to finish the cleaning of the basement since he was going to take it over with the picture framing, so needed to finish all of that vacuuming.  Then I folded some laundry.  Then I did a bit of paperwork.

At 2:15 I headed upstairs and decided that it was time for me to finally eat my lunch.  I had told my husband the other day that I was really hungry for my favorite sandwich, so he bought the fixings.  While walking through the dining room I realized that I still had Christmas decorations not put away.  So I went and got those boxes.  Then I started my lunch.  Turkey bacon, avocado, and farm fresh eggs on homemade bread.  I sat down in the living room where Beautiful was watching the football Combine and ate my sandwich.  Then I noticed that the toy box was overflowing and in disarray.  I got one kid on that project while I moved furniture and vacuumed under it.

My husband asked, "when are you going to start the soup?"

He started picture framing and I walked to the kitchen and saw that the plants had dead leaves on them (not a surprise since I remember to water them about 1 time a month).  So I messed with that.  Then I decided that the floor needed to be swept of my mess.  So I put another kid on that.  I went down to the freezer to get out some broccoli (see, I was getting around to it...).  I found a toy gun in there (really???).  I was excited to find some chopped ham for the soup so I didn't have to do that.  I took the food upstairs to get the soup started.

But one kid said that the toys were done, so I went to verify that and get that kid refocused on doing the job well.  Then I saw that the couch was still upside down so I finished the vacuuming.  Then I discovered that the sweeping wasn't getting done thoroughly so I got that child redirected.

Then I remembered clothes in the dryer and went to put sheets back on beds.

By then I had walked back in the living room and found my husband playing Super Smash with the boys.  I laughed and asked what in the world he was doing.  Superman laughed and yelled out, "he is having Father and Sons time!"

I had started a fleece blanket for JJ the other day but only got 3 sides tied.  I had just pulled it out of the dryer so decided that the freshly vacuumed and cleaned floor allowed me a work space to finish that...so I did.  Yay!

I did start some of the soup then.  But then realized that I didn't have another ingredient so went back to the freezer.  While there I found it, and also thought that I should get rid of some more peaches - a cobbler sounded good.  And I was thrilled to find a loaf of banana bread - a food that Buddy's friend who is coming over tonight enjoys.

I got back upstairs and started with the peaches.  Then I looked at the crock pot and realized I hadn't finished the soup.  So I got the soup finished.  See...I got it done...;)

Then I got the peaches going.  Last time I started peach cobbler I got the peaches in the pan but never got around to making the topping so the peaches went bad in the pan in the fridge (out of sight, out of mind.  If it isn't in front of me I totally forget!)  before I ever got the topping made to finish it.  I guess that is one way to get the peaches used up lol!

So, I still can't see my table or my counter.  But the soup is in the crock pot and hopefully will actually be done by supper!

I don't know what my husband was so worried about.  I mean, I got it done... eventually...

Even though I was originally supposed to make it yesterday.  I can stay on task, really, really I can!  He didn't really have to remind me so many times...did he??  :)

Well, I am off to make the topping for the cobbler.  I just got a little bit sidetracked stopping to blog for a few minutes...  I'll get it done.  I don't need any reminders...really;)

Oh, and the mess on the counter and table, I supposed I should do that too;)

Come to think of it, I probably should just hand my husband my to do list and tell him to keep moving me along.  I probably would get more done lol!

Apraxia Therapy Session 3: Unexpected Events...that allowed some answers:)

JJ woke up at 7:30 this morning and refused to go back to sleep with me. (Praise the Lord he has slept through the night for 3 consecutive nights though!  Woo Hoo!!!)  I knew that was going to mean a very bad afternoon at Speech Therapy...and I was right!  JJ usually sleeps until sometime between 9 and 11.  I know that is late.  I know people think that is why he won't go to sleep until late.  If they want to come and try to adjust his sleep cycle...they are welcome to it.

As it is we are in a pattern that works and we enjoy the mornings of getting things done while he is sleeping:)

So, when JJ fell asleep in the car at 1:15 on the way to speech therapy I knew that waking him would be bad.  JJ does not wake well.  Even when he has had full sleep and wakes himself he wants to snuggle for a long time and is groggy.  It used to take a couple of hours for him to "wake up."  Now it is 30 - 60 minutes...usually.

I got him from the car seat and carried him in.  I tried to wake him.  He wasn't cooperative.  We went into the room with Ms.  Erin...JJ then got increasingly upset.

Ms. Erin then got to witness one of JJ's Temper Tantrums.  The big kind where he pulls out my hair, bites me, kicks me, punches me, and scratches me.  At least he was too out of it to do the screaming...that was a blessing:)

It was also a blessing that Ms. Erin got to watch it.  I spent the 10 - 15 minutes trying to wake and calm him (He just wanted to cling to me and hang onto my bra strap - evidence that he was very over stimulated).  I finally decided that it wasn't worth it and to just let him fall back asleep.  He was sleeping again, VERY DEEPLY, within 2 minutes.  Ms. Erin was impressed lol!

I got to spend the time talking with Ms. Erin about our dilemma of when JJ's behavior is because of the Apraxia and when it is because of "strong willed stubborn" child.  She agreed that it is difficult, so we broke down his behaviors to try to figure it out.  I am thankful that she has a daughter JJ's age so that she is very familiar with "normal" behavior in addition to her expertise with Apraxia:)

She talked about Apraxia therapy being done mostly in the 1960's and Sensory Processing Disorder research primarily being only in the past 10 years.  That means that the issues that link the two haven't been well researched.  However, in her experience there are a lot of links between the two.  With there being damage to JJ's motor cortex, it is a guessing game how "global" the problems are.  They can be very specific to a certain part of his motor cortex, or it can be more global.  As with all brain abnormalities, it is difficult to pinpoint specifics.

However, she did share that kids with Apraxia tend to have problems with those neurons "waking up" after the child wakes up.  It makes them groggier longer so they can't do motor skills as well as another child whose brain "wakes up" more quickly.

We talked about his various sensory processing issues.  For example, the way that he calmed today was to be held tight with strong proprioceptive stimulation.  She said that I did the right things in how I was calming him.  She said that this particular temper tantrum anyway was not a willful tantrum but a sensory processing problem - reacting negatively when he was woke from a deep sleep.

He slept the rest of the session, slept through being buckled in the car, slept through being unbuckled and wrapped in a blanket and placed in a shopping cart in Hobby Lobby, slept through being put back in the car seat, and finally woke when we got back home.  Aside from the time frame of the tantrum he slept 3 hours and 15 minutes.  For a kid who never naps I was shocked.

Anyway, I was able to talk through with Ms. Erin a lot of his behaviors since he was sleeping and she couldn't do therapy with him:)  We discussed how frustrated he gets when people don't understand him (obviously very normal).

I told her about the problems that we have when we cut his hair.  He HATES the clippers.  He fights us like a mad man whenever we got to cut his hair.  I hate cutting his hair.  I hate even thinking about cutting his hair.  One person has to hold him down while we cut his hair.  It is a horrible experience.  Sensory issues.

You know how most kids love to be raised up high in the air, or at a minimum to be held up over the adults head?  JJ FREAKS out.  Hates it.  Even this weekend he ran to me and went to pick him up high and as soon as his head got an inch above my head his eyes got huge and he frantically grabbed at my head so that he would not go higher.  Sensory issues...

He fights taking medicine.  I studied him a lot last week when he was so sick.  When I went to give him his medicine and after initially refusing and my verbal insistence, he finally said, "just a little bit."  I have always thought that he was just refusing to take the medicine.  However, I decided to give him just a "little bit."  He took it fine, then drank some water, then took "a little bit" again.  I realized that by giving him even 1/2 tsp of medicine at a time I was choking him!  He cannot swallow even that at a time!  Most kids can drink with continuous swallowing.  JJ has to swallow, stop, swallow, stop.  When we give him enough to just sip, he can do it fine.  I never noticed it because he usually only uses a sippy cup (it is less messy!!).  I tested out my theory with giving him a straight cup and also with a straw and a cup.  He cannot continuously swallow.  Once I let him take his medicine with sips, he took it fine!  So many things that I have thought were strong-will are not.

Ms. Erin was not surprised by this revelation and said that swallowing issues are common with Apraxia.  She said that by doing exercises to improve his speech, it will help him swallow.  But exercises to help him swallow will not improve his speech.  It has to do with which muscles are being strengthened in the mouth.

So, for next week I am to get him to try to make the "k" sound.  Apparently the muscles with the "k" sound are some of the ones with swallowing, so it will give her an idea of where he is at and what muscles to be working on.

The swallowing problem also helps explain why he "can't" (not won't) eat certain foods and gets fatigued so easily when eating.

It was also helpful to be reminded that JJ does not have language to tell us when he is overstimulated, can't swallow, etc.  Thus, it all comes out with Temper Tantrum.  The better we are at reading his cues the few tantrums we are having.

The past 3 weeks have been a bit easier.  A lot of it is with Grace gone at school all day-there is far less "sensory input" with her gone.  But a lot of it is also in how Ms. Erin is teaching me to talk to JJ.  I also name everything and always give 2 choices.  That way he doesn't get frustrated with trying to retrieve information that he can't "find" and he is feeling like he is being given choices.  So, I will say things like, "Do you want to sit on the table or on the chair?" or "Do you want to watch a TV show or a movie?"  When going through the DVR shows I always name every show so he started to associate names with them (and I can hear how he says those names so he doesn't get frustrated that I don't know what he is saying:)

So, a temper tantrum was not in my plan for today's session, but God knew that it was exactly what was needed to give Ms. Erin diagnostic information and for me to have the extra time to ask her questions and learn more about how JJ "works" without distracting the therapy.  She kept telling me what a great job I was doing of studying him and advocating for his needs since he can't do it himself.  It made me feel very self-conscious but it also made me thankful that I am JJ's mom.  I am doing something right here.  I will shield him from those who think it is him being "spoiled" and "willful."  I have big shoulders and I will fight for him.  I will study him and learn how he "ticks."  I will take him to therapy and help him to speak better so he can advocate for himself one day.

And...his looooong nap allowed Beautiful and I to slowly peruse the new Hobby Lobby and come up with a very cute prop idea for her upcoming Save the Date pics.  I discovered that a sleeping child while I am in Hobby Lobby is dangerous - I wasn't distracted to get out of the store right away so kept coming up with "wouldn't that be fun?" or "I could try that craft!" ideas.  Ha!  I have shelves and shelves of books that I see and think "that would be a great one to learn more about that topic" that I never get to...adding crafts to that would probably make my husband go crazy (or have that excuse to buy yet another gun and spend more time hunting and target practicing lol!

JJ is on my lap begging to go make a blanket with the fleece I did buy him today at Hobby Lobby.  All of the other kids have big fleece blankets and he always has to use theirs.  Now he will have his own.  Hmmm...I did get to sneak a short term craft into my life lol!

Some sweet and silly moments

Last night JJ did something that made me cry.  I know that it seems silly, and I am sleep deprived so it probably touched me more, but it was a momentous moment.

He asked me, "Mommy, can you make me waffles?"

Of course, I didn't know what the word "waffles" was (he cannot say "f" at all).  I turned off the TV and asked him to repeat it a couple of times to try to understand. Thankfully, Superman was there and interpreted for me.

Waffles.

It is, I believe, the very FIRST time that JJ has EVER initiated asking for a novel food.  EVER.  Usually he will hear us talking about a food and ask for it, or drag us through the kitchen and point at things since he doesn't know the name.  The only other foods he will ever ask for are cheerios and milk.  Those are habit.  Those are retrievable.  He asked for a novel food!  He retrieved a novel word!

After I hugged him and praised him for asking I, of course, told him that I would make it right away.  Never mind that Buddy had already finished making supper - spaghetti and garlic bread.  He retrieved and used his words...he was rewarded!  AND...after several days of not eating because of being sick (he has consumed A LOT of freeze pops;) He even ate 6 bites of one waffle:)

I had to hug my husband and just cry a bit.  It was a sweet moment of progress:)

Allow me to bunny trail:
One thing I have learned in my profession, is that a cluster of symptoms does not a person make.  When I look at the list of symptoms of ADHD, then I look at my child, it does not even begin to describe what it is like to actually live with this child.  What her behavior actually looks like.  Interrupting? Doesn't organize well?  Leaves her seat often?  Sure.  But the arguing and fighting and noise level and lying and lack of trustworthiness and, and, and...the list of symptoms doesn't even come close to describing her.

I had her first parent teacher conference last night.  It is always amazing to me how she goes to other people and presents herself as a child who listens and follows through and...is nothing like the child we see at home.  I am so glad for other blogging moms who talk about this phenomenon so that I can endure the comments and thoughts of others who think that something must just be wrong in our home for her to act the way that she does with us and not with "strangers."  We are not alone.  Other parents of kids with her issues (whichever one is the problem: attachment issues, ADHD, whatever) endure this.  We can too...because we are not alone.  Someone else out there understands!  It is a good reminder to me that when a parent brings me a child and in my office the child is not what the parent claims the child to be...that I need to trust and believe the parent!

Anyway, I know that JJ actually saying "I want waffles" is probably not a big deal to any one of you who read this, but for someone other there it may be a word of encouragement and understanding.  Just like the mom who posted about the frustration of everyone thinking that when she talks about her child's behavioral problems the teachers think she has 3 heads and is crazy just because the child doesn't act like that at school.  Those words meant a lot to me.  I resonated with that.  I was glad she took the time to blog about it.

"I want waffles" was a moment that I will treasure:)  I don't think I will ever think of waffles the same way again lol!

*******************************************
Then we had a more typical moment in our home.  I went into the bathroom and discovered that someone had thrown a hand towel behind the toilet.  I grabbed it and found an item that had been ripped apart and "investigated" before attempting to hide the evidence.

It is hard to have older and younger children in the same house...

Younger children end up being curious about older children items...

So I sat the Middles down at the table and said, "who did this" and sat down the dissected item (well, it was items by then).  The child whom I already knew did it stared at me with the deer in the headlights look, then admitted it (progress...for that child).

We addressed the issue without actually using the name of the item as the problem was not with the item itself and the Middles left.  As the kids were leaving, Grace said to Beautiful, "So, what is a coupon anyway?"

Beautiful and I could not stop from laughing...although we tried.  Beautiful gave the definition of a coupon and we decided to just let it go at that.  Yep...a coupon.

*****************************
I have now gone 4 nights with minimal and very, very interrupted sleep.  I am starting to get a little punchy.  And a lot irritable.  This morning I was thinking about the old tootsie roll commercial where the owl asks "How many licks does it take to get the the center of a Tootsie Roll Pop?"  I was thinking..."How many nights of interrupted and pathetic sleep does it take for me to lose my mind?"  Four.

I was able to take a nap yesterday, but since JJ did not want to be without me he stayed with me.  I had him settled with Beautiful and had just got settled and almost to sleep when he came crying and banging at the door.  So...we got 2 hours of semi-sleep.

Last night he asked to go to sleep at 8:30.  Unheard of.  He still feels incredibly yucky.  However, when he sleeps he can hardly breathe so he wakes up at least every 15 minutes and that sleep is very, very restless.  He made it in his own bed for 2 hours - which means that my husband and I got 2 hours of interrupted sleep:)  Anyway, he was laying between us all restless and started talking a lot in he sleep.  He has never done that before and it was hilarious.  One of the things he kept saying was, "Buddy!  Buddy!  Buddy!  Not that guy!!!"  Obviously he was dreaming of playing Super Smash.  It was very funny.

We had eye appointments for 4 of us this morning.  we thought he would be better by today so we didn't cancel them. After much discussion we decided to bring him with and he just sat on the couch next to me and played his ipad.  He did a great job.  Everyone was given a clean bill of eye health.  My husband and I haven't had eye exams since we were in junior high so it was probably time:)  We are thankful we don't need glasses...and the kids are thankful that we got our eyes dilated.  They are laughing like crazy and the Middles thought it was a riot to have to read our texts, etc since we can't see.  Even typing this now I am not able to see the letters, just the shapes of the words.  Beautiful thinks I look like the kids that Lochi put under a spell in The Avengers...

I even had odd thought when we were complimented.  At the end of sitting for 2 hours for eye appointments the receptionist told me at least 5 times what self-controlled and well behaved kids that we have.  I laughed and said "Thank you," thinking about what she would think if we had another kid with us.  She said "good job" about parenting them and it really was an odd hurtful moment.  Superman and Faith are just really obedient kids in public.  They are quiet and docile.  It has nothing to do with our parenting.  JJ just happens to be really sick so he was not up to arguing too much (he begged me to go home 1/2 way through and started getting upset but I was able to talk him through it - quite frankly he was too sick to be bad).  While I appreciated the woman's comments about our parenting supposedly impacting the kids sitting quietly for 2 hours (aside from when they were in their appointments and they were respectful and kind), it just made me think about what people think on days when we have Grace with, or when JJ is more keyed up.  I have seen kids have no parental supervision and act poorly...but I also know that despite our parental supervision we have kids who act poorly.  It shouldn't be us getting the praise...it is the kids choosing obedience.

Alrighty then...I am rambling and probably not making my point at all...

*******************
I need a nap now.  Thankfully Buddy has JJ occupied with Super Smash Bros and I should get some uninterrupted sleep:)  I sure hope his fever breaks soon and he gets over this!

Please pray that he is healed very, very soon.  He is losing weight and just feels terrible (he has already lost 4 lbs:(  ).  I need sleep (imagine how many more rambling and crazy posts I'll type out if I don't lol!).  And we must attend this weekend's event.  It is my grandparent's 70th wedding anniversary and we haven't seen the family in years...

Some things we have learned lately

JJ has been sick for over 2 weeks.  It is his typical congestive stuff.  Thankfully he hasn't been this sick for over a year.  We have had a lot of interrupted sleep nights - but I am used to it so it is not affecting me as much as my husband.  Today it has really caught up with me though.

One thing that is happening right now is we are trying to figure out what behaviors of JJ's are Apraxia related, and what are just stubborn 4 year old. We are studying his behavior and looking at it from a different angle.

One thing we have learned is that having Grace gone at school really, really calms down the house.  I have sat down and thought, "hmmm, this is what other home school moms say school is like."  Kids who just quietly and obediently do their school, it gets done early in the day, and they have time to engage in other activities.  It is nice.

Especially since Grace is loving school.  The day after she came home in tears a teacher sat her and the other girl down and they worked it out.  Now Grace comes home talking about the girl and how they are friends.  We are so thankful for that.  Our other kids pray every day that Grace is not bullied.  It seems to be going well right now.  Academically are things improving for her?  We have her first parent teacher conference tonight.  We shall see...

With the calmer household during the day there is so much less arguing and tension in all of the kids (and my husband and I).  We are really noticing that with JJ.  He isn't as high strung and his frustration tolerance is increasing noticeably - at least during the day.

When he got sick and had a hard time breathing we started nebulizer treatments on him.  He fought them like a rabid wildcat.  I had to hold him down while someone else held the mask.  He fought every second of it and screamed and flailed.  My back and legs and arms ached from holding him still so long.  And when it was done he would have such a terrified look in his eyes and cling to me like he was trying to crawl inside my skin.  We did it twice, then Buddy suggested that I just wait until he is sleeping at night, and do it before he woke up in the morning.  That was a good suggestion and it worked great...

Until he isn't sleeping the last 3 days as his illness has gotten worse.  Today I held him upright and turned on the nebulizer while he was in my lap.  He used his words to yell "it is in my eyes!"  I praised him for telling me what exactly the problem was.  We shifted things around so I was covering his eyes, sang to him until the treatment was over, and he didn't fight at all.  In fact, he fell asleep!  That was a very good reminder to me that he has sensory issues that make him fight us, not just strong-willed rebellion.  I hope that he will remember to use his words to tell us what is wrong in the future so we can address it.

But, so many times he can't find the right words or he can't get us to understand what he is saying.  We have watched A LOT of Disney cartoons over the past week.  I have found some new ones that I actually like lol!  Anyway, once he was trying to tell me what he wanted to watch next and the word, as we would expect him to speak, sounded like "airship."  He kept saying it and I kept saying words that I thought he was saying and he just got more and more frustrated.  I finally figured out that he was saying "elephant!"  He thankfully calmed as soon as I  guessed the right word.  I was confused about it as he had started calling that show "Badu" so I assumed that he was talking about a different show when he used "airship."  He must have forgotten "Badu" or just wanted to try "elephant" again.  Who knows.

There have been a couple of times that he has actually tried to describe or use a different word to get us to understand rather than just start yelling at us.  I am pleased with that verbal flexibility that he is showing.

These things have helped me to understand his frustration more - that he feels like he is trapped inside his body and can't get his needs met.  He has been talking more and describing more since therapy started.  That makes me excited for his progress:)

Sitting on my lap for hours and hours and hours the past week I have watched him play his kindle games, water paint, etc.  He has had several times when he really surprised me with evidence that he understood something that I didn't think he understood - just because he can't verbalize it.

This morning it was when he was making himself a "boy" on his game.  It started with selecting the shape of his hair.  He picked "african" hair and even got his hair color and skin color and the number "4" for his age selected correctly!  I got thinking about how he sees himself.  Because he hasn't been able to communicate well with us, nor can he do as many fine motor skill activities as a typical 4 year old,  I have thought of him as so much younger and therefore not understanding more abstract concepts.  I am so excited to see these things in him and it helps me to remember that this is a motor skill problem, not an intelligence problem.  How to teach/expect with that dynamic?  I guess we are learning that...

I was so, so, so glad that he took his antibiotic today without spitting it back out on me like yesterday.  He doesn't tolerate medicines well as he hates the texture and taste.  He does like dimetap - he calls it the "juice medicine" lol!   We calmly approached him with his antibiotic today, told him that he could watch is favorite Disney show and chase it down with some Sunkist if he took it with no problem...and he agreed!  Yay!  Normally no matter what we bribe him with it makes no difference and the fight is on, but today it worked!  Any battle won with minimal fight with him (or Grace) is a relief:)

So, while this illness has been unpleasant for us all, it has provided some unique opportunities for us to intentionally study JJ in a different light and learn some things about how he thinks, what he knows, and how to interact with him that will hopefully lower his frustration and keep us from having to endure his temper tantrums - as some of them at least seem to be more sensory related than willful.