Friday, 6 June 2014

A Day With Jack- Ups, Downs, and Tear Provoking Progress

Yesterday was action packed.  I took the day "off"(insert the usual laughter here).  I did actually have from about 9:15 to 10:30 all to myself-  took a shower, put on real clothes- good stuff.

Jack had two doctor appointments yesterday- one with his pediatrician- for preop, and one with the pediatric dentist, also for preop.  Jack has had dental issues since the day his first tooth can in- well, let me rephrase- I could see abnormalities in the enamel right away.  By age 3 he needed 6 fillings and crowns on his back teeth.  It was not a pleasant experience at all- we were asked all of those "irresponsible parent" questions such as- how often do you brush his teeth (twice a day), how much juice does he drink (not much and it's always diluted 50/50), did you give him a bottle in bed?  Well no doctor, because my son refused all bottles after the age of 6 months, he solely nursed until he was 22 months old- a former babysitter was reduced to trying to squirt water into his mouth with a bath toy while I was working. Try again.  And of course, because of the extensive nature of the work needed, and jacks oromotor guarding he had to be under general anesthesia- so about $7000 later...out of pocket...we were all set.  Except that one of his crowns fell off, and then last week one of his crowned teeth fell out??

Anyway- one of his teeth has always been malformed- they tried to reshape it (I am guessing with white filling material) when he went to the or, but it keeps decaying- it's his enamel again.  And he had swelling in his gums around one of the crowned teeth.  We took him to our dentist, who tried to extract the tooth in the swollen area (after an x-ray showed infection)- but jack almost kicked HIS teeth out in the process.  So he sent us to a new pediatric dentist- who wants to extract two teeth, put in spacers, and potentially fill two more. It sucks. But it has to be done

I was looking at the treatment plan yesterday while we were in the office and noticed one of the teeth to be filled was one of his NEW molars- ie in for about 5 months!!! What. The. Heck???? The dentist asked if I had any questions and I was like ummmmm yes.  I told her how concerned I was and she went on to explain that about 10 percent of people are born with this issue.  He has very weak enamel, the fact that any type of decay could happen that quickly just further proves that.  She recommended getting every one of his current teeth sealed, and then, as soon as a new tooth erupts, bringing him in to have that one sealed as well.  This stinks, but at least she is not blaming us and wants to be proactive.  I am thankful for that.

When both appointments, which were obviously quite stressful and stimulating for jack, were over we headed back to his school.  His end of year party was scheduled for yesterday afternoon, all the parents come, and I didn't want to miss it. (Even though if I'm being honest, I would have loved to miss it).  The kids write a book each year, and at the party they share their book with the class- it's a really big deal to them, and I knew Jack really put effort into a story he was very excited about (this year the children were sharing an experience they had had)- although the whole quietly waiting his turn and listening to others first concept is still extremely difficult for him.  Anyway, off we went  As we walked down the hall, his class was coming back from art or music from the other direction- another transition on top of like a million others yesterday.  This is one of Jack's biggest challenges btw.  Then we walk into a classroom full of parents and with lots of food that he couldn't have yet.  It was loud, it was different, and Jack was discombobulated to begin with from the appointments.  And he was really having a hard time.  Now in the hard time department we are actually pretty lucky.  No violence, no self isolation, nothing "unpleasant".  But his little arms start flapping, his whole body stiffens, he starts shouting (louder than normal) and running from person to person, asking them about planes, locusts, dragonflies, etc.  You can immediately tell which parents and children are good with this (some of the kids just LOVE him and it is very apparent) and unfortunately tell those who are not just as easily.  Someday I SWEAR I will stop caring, but yesterday wasn't that day.  When jack has a hard time, I have a hard time.  I just wanted to grab him and wisk him awake from the few disapproving looks.

Turns out, I didn't have to.  His special ed teacher happened to walk into the room, she took one look at Jack, walked over to me, and before she opened her mouth, I said "this is way to much for him.".  She agreed, and asked Jack if he would like to have a chance to read his book to just us.  At first, Jack protested, he said he would have nothing to eat (or, if you want to know his real, scripted answer, he said, "but I'll have no food, no water, no communication"), but then she asked if he would like to fly into the other classroom and he was game.  If you look below, you will see that Jack's teacher has a shelf of vehicles with propellers, all there for one very special Jack, as rewards.

She handed him a plane and we "zoomed" next door to read his book.

I have to say this.  I am so incredibly proud of my boy and his progress this year.  Looking at this book drove it all home, not just his progress with reading, but his ability to coherently tell a story, his follow through, and his willingness to do fine motor activities.  I know that they had a long period of time to work on these books, but even so, compared to last year, this was fantastic.  Not to mention that last year, getting him to go through his book was like pulling teeth (no pun intended, ha).  This year, he just, read it.
This is about when my waterworks started.....

But here is where I really started blubbering.  This little boy could barely write his name at the end of kindergarten.  If you asked him to draw a picture, he would likely try to run away or literally scribble a few lines and say that's it.  I know that the drawing above looks very very basic- I know that "most" first graders' pictures look very different.  Don't care.  If you look- the blue is my CRV, the little guy with the big smile is Jack, wearing his favorite color, orange.  The big person in the front is me, also with a huge smile.  This took thought and planning, and most importantly for Jack when it comes to fine motor, motivation

And look at his colossal squid (I commented to his teacher that the person who helped him with this probably had to look up how to spell humboldt, ha)!  It looks completely awesome!    

I wrote this (other than the typo that reads Max- guess he had his typed up right before Jack's, ha).  I LOVE this picture of Jack from Easter, it is so him.  

He continued to have a pretty rough time when we returned to the class for snacks- he had a hard time waiting in line, actually what he yelled was "I DO NOT want to be the line ender".  Guess what, a little girl in his class who was done with her snack came and stood behind him, not to get more food, but to be the line ender so Jack wasn't.  That is a nice kid, right??  I was still trying to keep him calm for the rest of the "party" (or trial by fire for autism families), but I was also in a bit of a bubble- no matter how hard of a time Jack was having, all I could really think about was the book, and his teachers and classmates that are always looking out for him.  Forget those few snotty looks- for the most part, he is surrounded by such positive people every day.  And look at how he is thriving.  I am one happy mama.  


  1. It is a great site and i will visit this site again individualized education plan We provide special help for parents and child for special needs. To evaluate your child`s special needs you can take our help. Come with us for better education.

    1. Maria that is terrific. Can you tell me about your special needs program that you run? I would be most interested.

  2. Thank you for sharing your stressful day. Your Jack sounds like a cool guy! I know how you feel about the dentist. My son Drew is 27 and has Down syndrome. I tried for years to get him into the dentist chair but he would never cooperate (full-out meltdowns). He always had to go to the hospital and have anesthesia to get any dental work done. Finally, when he was about 16, we found a pediatric dentist that Drew would see. I'm not sure if it was the dentist or that Drew just matured. And I well know the stares you experience. Adults used to look at me with pity or shock. I don't notice if people look anymore. Drew is just Drew and he's ok with his world. Have a great day! Take care.

    1. I live on the spectrum myself as as a kid, I was lucky to not be afraid of the dentist. I had meltdowns about wanting to see the doctor when I did not want to because I was sick. Then I had them one time over having some blood work done.

      Anyway check out my blogs-

  3. I just read your blog and it sounds like you very good in the lives of both your children which is very important.
    I think that Jack's fascination with planes could land him a future in aerospace engineering. He would also work on plane engines too.

    Anyway I myself am a blogger who happens to live on the Autism spectrum myself and I am doing a series of blogs about living with Autism.

  4. Your pediatric dentist is quite understanding; that's very important as patients don't want to be disheartened. If there's a silver lining, it looks like Jack likes his new dentist, something that is important for dental appointments that may come in the future. Jack's progressing really well, and with your help, I'm sure he'll be just fine.

    Ted Grimmer @ Cody Dental Group