Official Diagnosis, Round 1

After meeting with the psychologist, occupational therapist, and the school district team we have an official diagnosis - Sensory Processing Disorder.

While I don't think this will be our last stop on the road to answers, it does give us a great starting place. They identified that he is a sensory seeker, especially in the vestibular and proprioceptive areas. (Try saying proprioceptive three times fast...)

He has avoidance behaviors in a few areas, mainly with auditory issues. For Rocket Boy, mechanical noises are especially hard - vacuums, the garbage disposal, hairdryer, our clanky car, etc. He also has some tactile avoidance, mainly with sticky/gummy textures or foods.

The school mentioned that he has evidence of some very advanced problem solving skills and is advanced in some other areas as well. They noticed some of his scripting and rote conversations and stimming, which at the very least was affirming to me that I am not imagining things. They noticed attention issues as well, but they were able to bring him back to task pretty easily.

The psychologist says that the testing shows "autism-like behaviors" driven by sensory issues and possible ADHD. While they don't diagnose ADHD in children this young, she sees sure signs of it especially given the strong family history. I'm not sure that she ran the full assessment that should have been done (actually, I am sure she didn't as she said so herself) but for now we are at a point where we can get OT help and see what improvements we see.

We are working on making some simple changes at home to help with his seeking behavior. I made a DIY "crash pad" for him with a sleeping bag and extra pillows and blankets. I plan to make a post soon showing this little project. While it needs a little tweaking, it works as a quick fix for a kiddo who CAN.NOT.STOP.JUMPING. He really seems to love it and our couch is getting a little break.

We changed around our Christmas lists to include a lot of sensory items, and I'm hoping to pick up a mini trampoline on Black Friday. Trying to explain to family that we need things like fidgets and weighted blankets instead of another electronic toy is a bit difficult, but hopefully they will follow the list anyway.

Speaking of Christmas - here is a little peak at taking card photos with my two Rockets:

Processing...

Our evaluation with the child psychologist and occupational therapist was last Wednesday.

I thought I would update right away, but honestly it was a lot to process.

And we don't know the results until this Friday.

Honestly, I am still not sure what to think of the experience or what I was told. Currently, autism of any level is "off the table" according to what the psychologist told us at the evaluation. Apparently, he is too talkative. Having met autistic children and adults and parents of autistic kids, I know very well that autistic individuals can be talkative and social. I found it really odd - and frankly wrong - to take autism out of the equation simply based on the fact that he interrupted me hundred times during the evaluation.

And then I get this feeling of guilt that I am "upset" or "confused" about autism not being a possibility - obviously as a mother I would love for a doctor to see and say he is totally normal. Except that is not what she said - she said that we are obviously looking at "something", most likely severe ADHD and SPD (sensory processing disorder). She said that many of the symptoms/behaviors can mimic autism, especially Aspergers/high functioning. Even with her admitting that his behaviors (especially in repetitive behaviors/stimming) appear autistic, she refused to use the autism diagnostic checklist during their playtime.

If she decides this is what he is dealing with (ADHD/SPD mix), the only options we have are occupational therapy (OT) and later on, medication. When I expressed my worry that while he does okay in school now (3 hours, twice a week), that he could be overwhelmed later on when it is 8 hours a day, five days a week her answer was "well, that is when you use medication".

We are already doing the other things suggested, like diet changes (he doesn't have sweets, sugar, junk, and after taking out food colorings we saw no difference though we do avoid them in general anyway). We already are using the parenting techniques she mentioned. I feel as though she heard our cry for help and answered with a generic label.

We will see what Friday holds. What her final conclusion is. If nothing else, we have gotten in touch with an OT that we like through this (who was much more helpful!) and at least she is taking his sensory issues seriously. We also get the "results" of the school testing on Friday, I thought they were helpful as well when I met with them during that evaluation.

In case you can't tell, I am still processing, I am feeling muddled. And I am feeling rather foolish that I hoped the first doctor we met with would listen to me and take his entire history into account, not just the good day he was having that day. I came in to her specifically with questions about "Level 1" Autism - because when I read those criterea, when I look at the books and the examples and the checklists, I see my boy in the pages. I can absolutely accept that it can be something else, but I at least want my concerns taken seriously.

Everyday since the evaluation has been very hard for Rocket Boy - he is in a sensitive period right now, and everything and anything is setting him in tantrums, fear, or crying. I can see the confusion in his eyes when he can't handle the world, and it makes me even more determined to make someone listen. I'm his mom, I know him better than anyone, and I know that I have to work for him to find out what our answer is - no matter what that ends up being.

Piles and Piles of Paperwork

Wonderful news in our journey - we got an appointment for autism evaluation. The child psychologist's office called me back and we have a spot for a 3 hour evaluation, on November 5th. There will be a parent interview, child interview, a play session, and then an evaluation with the occupational therapist to look at motor skills and sensory issues. Then the next week (on the 14th) I meet with the team to discuss the findings. That same day I will also meet with the school district team to discuss their findings.

So basically, the 14th is a pivotal day for our family.

I probably won't sleep between the 4th and the 14th.

In preparation for the evaluation they have sent ahead piles of paperwork and questionaires. The GARS-3, the BASC-2, a sensory evaluation sheet, an Autism checklist from another source, a checklist from our hospital system, and the normal intake papers. On top of that, I will by typing up documents to accompany several of the sections, since my comments and concerns won't fit in the little space provided. I am all about providing everything that might be needed and covering my bases before I am even asked. I also get flustered when something emotional is going on, and I don't want to forget anything.

Rocket Boy's behavior has been in a pretty downward spiral as of late. Yesterday, he tried to choke me...yeah. My three year old put his hands around my neck and squeezed and yelled. I have no idea where he got that from. We are very careful about what he sees on TV and he has never seen that kind of violence at home. Ever. That meltdown and aggression started when I asked him to stop running his car into my leg and he threw it at me. I took the car and the meltdown commenced. He finally passed out for a nap. I had to lay down and calm down...and just cry. Hearing my little boy yell "I don't like you!" and throw things and hit me and get so physical - no mother wants to experience that.

I hope that this evaluation leads to answers and help. Rocket Boy and I need tools to help him.