Saturday, June 11, 2016

Mommy's concerns

So I did a lot of thinking over the past two weeks. A LOT of THINKING and a lot of watching. So finally on Friday at work I brought up the possibility of having Dacotah scheduled to see a behavioral pediatric physician to rule out autism. Call it a gut feeling a hunch.. Crazy thought or what have you. But I have many reasons.

Everyone says he makes great eye contact and he interacts. True, but high functioning autistic kids do both as well.

Everyone says he will keep learning new words: so far for every new word he loses a word. This week he stopped saying no no no and just goes huh uh. A lot!

He doesn't babble: quite honestly looking back over the videos he stopped around 12 months.

He no longer says daddy: he calls us both mommy.

He screams and arches his back to avoid diaper changes or when you attempt to change his clothes. This is not terrible 2s, this is EVERY SINGLE TIME WE CHANGE HIM

M-CHAT-R is an autistic toddler questionnaire that follows up on questions to suggest whether it's toddler normalcy or if it's something to consider. After filling out the report 6months ago and again on Friday the result had no changed and suggested we seek a specialist to rule out ASD.

His attention span with trains is over 5 minutes, and he will play his tablet for a long time we are hoping he will watch enough videos to pick up some signing.

He dislikes humming or singing noises, he hates the vacuum cleaner (despite ours being quieter than most), the radio being on in the car leads to a meltdown. Etc.

He does not and has never slept more than 4 hours at a time before waking up.

Do I feel like a diagnosis is going to solve all our problems at home. No, but by making sure we rule out every possible diagnosis, it allows us to get him the most accurate help so he can advance and continue to make progress. It is my hope to eventually to increase his OT from twice a month to four a month. I don't know if it's possible and we are making progress with what Mel's suggested so far, but in the two weeks since she has been here it feels like he is getting frustrated and melting down a lot more often.

So, I called Bill Côte, NP on Friday and spoke to his nurse, I asked for a referral to their preferred physician for an autism evaluation. There was never a hesitancy in her voice and Bill was standing by her because I heard him talking to her in the background. He gets regular updates on Dacotah's progress and he had concerns at his 18month and 24 month well visit. They are going to send him to see Kristi Cook.

I called the office to make sure she took his insurance and asked the front desk how soon we could get him in once they receive the referral, the lady said it's possible to get him in before the end of the month!

Please understand I have an almost 9 year old, I am not being an over freaked out mommy. I just know that in the sense of normal two year old behavior that Dacotah is not on track, and it's my job as his mommy to figure out how to help him so he can achieve the same milestones as other kids his age.

3 comments:

  1. A couple of things:
    1. Never feel the need to justify the path you take to find out how to best help him. You don't owe an apology or explanation about why you have concerns. You're his mom. You are going to know what to do...AND, I'd much rather go and they say "he's perfectly lovely" than to ASSUME it's all fine and do nothing.

    2. You are his advocate. You're the only one who can get him whatever assistance he needs. I appreciate the stance of "let's figure this out." SO many parents deal with years of denial and miss out on crucial time that could be spent with intervention and making HIS progress.

    3. Lastly, compare him only to himself. No two kids are alike... and he will continuw to make progress in his own time. God created him exactly how he is and for a specific purpose. He WILL fulfill that. God is faithful to keep His promises.

    I praise you for I am fearfully and wonderfully made. Your works are marvelous, I know that full well. Psalm 139:14

    Keep calm and stay focused. One day at a time...sometimes one minute at a time.

    ReplyDelete
  2. A couple of things:
    1. Never feel the need to justify the path you take to find out how to best help him. You don't owe an apology or explanation about why you have concerns. You're his mom. You are going to know what to do...AND, I'd much rather go and they say "he's perfectly lovely" than to ASSUME it's all fine and do nothing.

    2. You are his advocate. You're the only one who can get him whatever assistance he needs. I appreciate the stance of "let's figure this out." SO many parents deal with years of denial and miss out on crucial time that could be spent with intervention and making HIS progress.

    3. Lastly, compare him only to himself. No two kids are alike... and he will continuw to make progress in his own time. God created him exactly how he is and for a specific purpose. He WILL fulfill that. God is faithful to keep His promises.

    I praise you for I am fearfully and wonderfully made. Your works are marvelous, I know that full well. Psalm 139:14

    Keep calm and stay focused. One day at a time...sometimes one minute at a time.

    ReplyDelete