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.