In December our Pediatrician recommended we see a Developmental Pediatrician because of the receptive language delay. I honestly put off making an appointment because I really thought the language issue would resolve itself and Ellie was already getting speech therapy, so everything would be fine.
In January Ellie start self-injuring herself (hitting herself in the face/head with her hands or finding a hard object to strike with her face, or any part of the head/skull).
I could no longer avoid the appointment after she started self injuring. That was a huge red flag. And we couldn't allow her to just continue to hurt herself...she has hit her face so hard on the tile floor she made her mouth bleed. It's awful to see.
We were VERY lucky...our appointment originally scheduled for SEPTEMBER 27th was moved up to February 22nd due to a cancellation! I'm not sure what I expected the outcome of that appointment to be, but our life has been a chaotic tornado ever since. Most of the chaos is self-inflicted because of the devastation, confusion, and the immediate removal all my sanity (or at least it has felt this way...often).
The Developmental Pediatrician who evaluated Ellie saw lots of things we had chalked up to being just Ellie...her not responding to us/her name, poor coordination, balance issues, not playing appropriately with toys for her age, banging her head against objects when she's frustrated, hitting herself, sleeping with her head jammed into the bed rails of her crib, low muscle tone, unable/unwilling to follow one/two step directions, repetitive behaviors (pushing buttons, light switches, buckling buckles, etc), her speech delay, some speech regression.
When you list it all out that way it's a lot easier to see a problem. We honestly just see the most beautiful red-headed little girl we've ever seen...she is so full of life. She LOVES to hug and kiss us, she lights up when her people walk in the room, she just doesn't always hear them, respond to them, walk to them without falling, etc. Her speech is progressing, slowly, but surely.
The Developmental Pediatrician diagnosed Ellie as "at risk for Autism" so we could participate in a research study/have Ellie tested (for free) further before being diagnosed with Autism Spectrum Disorder (ASD).
I can't speak for Mike, but my brain is literally so overwhelmed and confused and somewhat in denial that I have felt like puking for almost a month. I have read so many things, and have tried so hard to learn how to get Ellie the help she needs, and the steps we need to take once we have an official diagnosis, which will happen on Tuesday.
Ellie is so social and such a love, I had no real idea someone who hugs and kisses and makes eye contact and is so, so happy (almost) all the time could have autism. When you read the list of "issues" it isn't hard to agree with a diagnosis of ASD, but when you KNOW Ellie, it's pretty unbelievable that we are where we are.
I've read that a lot of girls are not diagnosed correctly with ASD because it presents differently with girls than with boys, so they (the girls) don't receive the intervention they need. We feel very blessed to have a diagnosis this early and know it will improve her quality of life exponentially if we advocate for her the way she deserves.
P.s. Any advice from anyone who has been where we are would be appreciated. We are traveling this very uncharted road for the first time.
P.s.s. We need love and support. We do not need to hear that Ellie is fine, that she does not have Autism, that her behaviors are normal, or anything along those very unsupportive lines. If you need to say anything along those lines, please just don't. I'd rather you hit me in the face and take my Cherry Coke away.
2 comments:
Hi Randi,
You don’t know me, but I’ve followed your blog for many years now. I came across your blog when you wrote about your dear friend, Kim, on her blog when she was going through her cancer treatment. I didn’t know Kim myself, but my friend Sarah did and she shared what Kim was going through via the blog.
At any rate, I thought I would send you an email to offer any help that I can as a mother who has gone through the ASD diagnosis and grief that follows. My precious son was diagnosed as being at risk with ASD when he was 2. At the time, I was told ASD cannot definitively be diagnosed until age 8. As I read your post, my heart ached as I too saw my child get so frustrated that he would crawl head first into the pantry door over and over out of frustration. Liam didn’t speak until he was 2 1/2, he is now 8.
We have been down the early intervention path with the state, developmental pediatricians, speech therapy, OT, psychiatry and MSW therapies. It’s all too overwhelming when you step back and look at it all. If I can offer you any guidance, not as an expert - but as a Mom who loves her kid, I am willing.
Kristi
Randi,
I don't see where my facebook post actually posted. I know what Michelle would tell you were she here. This is an issue that can be managed and that does not necessarily mean a lifetime of the same exhibiting issues. Michelle's little brother Greg was diagnosed as "multiply handicapped" at age 3. As someone told me back then, the label is just a word that means you will get your sweet baby girl the help she needs.
That experience allowed me to see issues that began presenting in Julia very early. Before she was 3 years old, Julia was diagnosed with Autism after some similar issues to Ellie (not listening and interaction issues to name a few). While she did not self-injure, she did have significant breakdowns when she couldn't express herself or, particularly, when schedules changed. Her diagnosis allowed them to get weighted blankets and other items at daycare (and at home).
Michelle had enough experience in dealing with her brother (who is now 24 and a 911 fire and police dispatcher) that she knew some of the tricks to help Julia. Others she learned from the pediatrician. She used things like picture cards on the fridge so that Julia could communicate with her as to what she wanted (i.e. milk, juice, cereal, etc.) She also taught Julia some sign language that are easy at that age. (We've used them with our non-autistic children since then.) Phrases/words like "all done" and "more". We also made sure that she has a strong routine - anything unexpected threw her into a panic.
Another tool is to narrow down the choices. Limit toys so she doesn't struggle with making choices. (You don't have to throw everything away - just put some in bins on the top shelf of the closet and bring things out 1 or 2 at a time.
If taking her to a restaurant, talk with her to decide what she wants to eat first before she's in the noisy, distracting environment. Same thing for stores. Toys R Us was the worst for both Julia and Greg - they couldn't focus enough for those environments so making a decision first helped.
I wish Michelle were here to help you - she would be your greatest supporter and advocate. All I can tell you is that Julia is now almost 15 years old and taking advanced college-level classes (Cambridge Program) in 9th grade. She has been downgraded to Asperger's and still has some issues but we've learned to work with them.
I'm here if you want to talk - while I'm not Michelle, I have broad shoulders and a good understanding of what you are going through. Message me on FB if you want my phone - I don't want to post it on a public blog.
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