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Special Needs
azzyberry
member
Feeling lost..pity party inside (vent-long)
azzyberry
member
A little Background: My 4.5 yo DS has ASD. He was diagnosed really young at 19 months old and we were able to start ABA and early intervention and he is doing awesome.
As far back as I can remember I have always wanted to have 4 kids but having a child with special needs changes things. After DS's diagnosis, we decided we would have another even knowing we had a higher chance of having another child on the spectrum. We also said that if our 2nd child was on on the spectrum then we would be done. If our 2nd child wasn't on the spectrum then the possibility of having more would be open for discussion.
My DD is 2 yo. When she was 9 months old we enrolled her in a study for younger siblings of kids with ASD's. They evaluate her and track her development at specific time periods looking for any signs of ASD.
When she was 12 months she did have failure to thrive, was very under weight and had significant gross motor delays. She did PT and OT and she is completely caught up in those areas. However, as a result, it delayed her skills in other areas but she continues to make progress.
Anyway, last week she had her 2 year evaluations in the study. This morning I had a phone call to discuss the results of the evaluations. I anticipated that they would tell me she is delayed in some areas compared to her peers at this age. What I didn't anticipate was that she meets the diagnosis criteria for ASD.
I'm heartbroken and confused. I have never been a parent in denial. With my DS it was obvious. I suspected ASD even before he was evaluated because of his behaviors and mannerisms. With my DD, I just don't see it. She doesn't do any of the things/behaviors that my DS did or what is considered to be a typical ASD behavior and even though she is behind compared to her peers, she is far more advanced than my DS was at this age.
When I got off the phone I ugly cried and threw up. Oh, and I'm also 8 weeks pregnant. We decided to try for a 3rd because we didn't see any signs of DD having ASD.
There is no point to this other than if feels good to get it out. Thanks for reading if you made it this far.
This discussion has been closed.
Re: Feeling lost..pity party inside (vent-long)
Big, big hugs. It's never easy to hear that kind of news, especially when you're blindsided by it.
My DD1 is on the spectrum, and I do see quite a few differences between her and little boys we know who also have ASD. I mean, every kid with ASD is different, but I think girls with ASD are a different animal in general compared with boys, and can have more subtle differences despite still meeting the criteria -- so when you're talking about that, plus a kid who is less affected than a sibling at the same age, I think it's very understandable that you didn't jump right to her being on the spectrum as well.
Be gentle with yourself as you process this -- I'm sure being pregnant/exhausted/hormonal/maybe sick isn't making this any easier. Big hugs.
DD1, 1/5/2008 ~~~ DD2, 3/17/2010
I'm am so sorry. I know all too well what you are going through and it just sucks. There is no way around it, it hurts like crazy.
I have three boys and all three have now been diagnosed with ASD. Our oldest was diagnosed when he was 4 years old after he didn't pass the vision portion of his kindergarten screening. The person doing the screening said that she didn't think it was a vision issue, but something sensory related. She sent us to a pediatric ophthalmologist who suggested that we self-refer to a screening from the school district. Through that we got his asperger's diagnosis.
While we were going through that process, we learned so much about ASD and quickly realized that our second child was showing us a lot of traits that made us think that he was probably on the spectrum too. We had an EI eval and a private eval and he was diagnosed with ASD (more classic presentation) a few months after his brother at only 18 months old.
About two years ago we found out we were pregnant again. It was unexpected in our case. I spent the entire pregnancy just sick thinking about this new baby we were bringing into the world. At our 20 week U/S we found out we were having a boy and I sobbed and puked for hours after knowing that this little guy had such a great probability of being on the spectrum too.
Like you, we enrolled him in a research study for at risk infants when he was six months old. At his 12 month research study appointment we saw a few things that were red flags but not enough to pull the trigger. Unfortunately our study was coming to an end so the the neuro-psych we were working with suggested that we make an appointment for when he was 18 months old with the caveat that we would call right away if any big concerns came up.
Just shy of my son being 15 months old I was out to dinner with some of my friends from my ASD support group. They asked how R was doing. I had been noting all these subtle little traits that we were seeing for the 2 months since we had our last research appointment. I started saying it out loud and I will never forget the look on my friend's face as I was talking. I started sobbing again in the middle of Chili's because I finally heard all the things out loud that I had been noting in my mind.
I emailed our neuro-psych from my phone in the middle of Chili's and let her know that I had some concerns. I never told her my exact concerns, but 10 days later when she performed the toddler ADOS on him, she had the exact same concerns that I did.
My heart is still broken. It has been just over 2 months since we had him diagnosed and it is just so painful to think about everything he is going to have to overcome. I am finding it is almost more difficult the more times you go through this. I look at my 7 year old and my 4 year old and although they have made tremendous progress in the past 3 years, I am less certain now than I was then what their future will look like. I know how hard this road is. It really just is heartbreaking.
Be kind to yourself. Let yourself grieve. And of course remember to take care of you so you can take care of your babies. :hugs:
They did actually give her a diagnosis. They said she rated in the very low range in visual reception, fine motor, receptive language, and expressive language compared to peers her age. However, she rated average in adaptive communication, social skills, play/leisure, and coping/transitions. They also said she had good joint attention but that her eye contact/facial expressions were limited (which I completely disagree with).
She also has ZERO typical ASD behaviors. She doesn't have any repetitive movements, she doesn't fixate on any objects, she doesn't have to stay in routine, she transitions well, she doesn't line things up or have to have her toys in any order, she doesn't hand flap or any other odd hand movements, she doesn't bang her head or any other self injurious behavior, she doesn't do any rocking, she doesn't have any sensory issues, she is very verbal (although not up to the standards of her peers).
I know that she is behind her peers but I'm having trouble seeing how these delays equates to ASD when she doesn't have any of the typical ASD behaviors.
Thank you everyone for your kind words/advice.