Special Needs
MamaPajamas
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New here
MamaPajamas
member
Hi everyone- I am new to the board. I am honestly not sure what I am looking for... Advice, maybe? Just anyone to listen to my rant? I don't know. I have 2 children, a 3 year old DD and a 1 year old DS. My son has some developmental delays and likely has SPD (can you get a "real" SPD diagnosis?). He qualifies for weekly OT, PT, speech, and feeding therapy through our local EI, although they won't actually start speech until 18-24 months. He was delayed in every area of the evaluation. He has a lot of sensory issues with textures- he won't touch grass or water without a full meltdown, for example, among many other things. He can only eat the stage 1 baby purees, and everything else makes him gag and vomit. He also has some other issues/quirks. I have a family member who is very highly educated and trained in special education. She means well, I know she does, but I'm just not sure how to handle her right now. She hasn't come out and directly said that she thinks my son has autism, but she keeps making comments in this direction. I get the feeling that she is trying to get me to start thinking about it so that I am not completely blindsided in the future. I am just so frustrated, though. My son is only 1, and I feel like she is trying to pigeon hole him into something when he is still so little. The first time she brought it up, she made a passing comment about something my son does as "being on the spectrum". The second time, she was giving me ideas for pureeing food (DS can't eat homemade purees because I just can't get them smooth enough for him), and she mentioned something that is done with the kids in her school district that have autism and can only eat purees. Both times, it just sent me into instant defensive mode, and I felt like I just shut down. I keep telling myself that it is because he is too young to know something like that, but when I really reflect on it, I think a lot of it is just fear, too. I remember google searching why DS wouldn't make eye contact with me while he was nursing (he still nurses and to this day has never looked at my face while eating). I remember asking my pediatrician at his 3 month appointment if DS could have a vision problem because he would never look at our faces, but seemed to focus on things across the room. DS has a lot of sensory seeking behaviors, like rocking. He is constantly hitting his head (with toys, with his own hands, or throwing his head into things over and over) or shaking his head "no" for extended lengths of time. His speech is delayed, but the speech therapist is hopeful that it is because he doesn't eat and hasn't learned to move his tongue properly. His fine and gross motor are delayed with low muscle tone, specifically in his torso, and he is getting fitted for AFOs. I don't know. Part of me just thinks that this could all just be SPD and nothing more, but then I can't seem to figure out if the reason I get so defensive and shut down over a potential autism diagnosis is because maybe there are just too many red flags. ::sigh:: I just feel defeated. And just to be honest, I may DD this post because I want to get this off my chest, but I'm not actually sure I want to read any opinions 
I have already gotten a lot of encouragement and advice from reading previous posts, and I am looking forward to being part of this community.
I have already gotten a lot of encouragement and advice from reading previous posts, and I am looking forward to being part of this community. This discussion has been closed.
Re: New here
It's all very hard to take. I was in some full-force denial and ended up leaving our DCP when she nervously called me one night suggesting the "A" word when DS was only 18 months old. It sounds like you've already got some great supports in place, so you're well ahead of the "denial" curve. It is tortuous to hear people talking about all of the delays your kid has, especialy if you don't see it yourself.
As far as the age- there was a study done that examined kids' with autism 1st bday party videos to see if they were showing signs of autism at 12 months. I went back and rewatched DS's video and had to chuckle at all the nuanced signs we missed. Like, at 13 months I took him on the plane for the first time- why did I think it was okay or normal that the only "toys" I took with on the plane were pop cans, cups, tinfoil, and other sensory non-play items? Or that he didn't interact or giggle and laugh while he ate his bday cake? Or "play" with any of the toys? Or that to get him to nap as a baby I would make sure to always place him under the ceiling fan that he loved to gaze at? Or that we had to put duck tape over light switches because he would obsess over them? Ugh.
I'd get your son in ASAP. Look at it this way- if nothing else, it will put your mind at ease if he in fact is not on the spectrum. There was a lot of "waiting" during this phase. DS was evaluated at 19 months by EI and given a tentative diagnosis but I didn't get a medical diagnosis until he was almost 3.
Thank you for replying. We actually keep empty water bottles with us because they are a never-fail "toy". In his nursery, he bypasses most toys, and instead plays with empty buckets or baskets or spends long periods of time opening and closing the toy box over and over. He couldn't eat cake on his birthday, but didn't want to touch the whipped cream we gave him too much because he didn't like how it feels. Then of course we had to literally torture him wiping/rinsing him off (the feel of water is probably the thing he hates most in the whole world). He didn't play with any of the toys he was given at the party, but held on to each card and opened and closed it over and over until we gave him the next one. Everyone thought it was "so cute", that I haven't really reflected on it maybe just not being normal until I read what you wrote. These things probably are not "normal", are they? Do Development Pediatricians really ever not diagnose? I honestly don't mean that harshly, as it probably sounds. I am sincerely asking. Do parents/kids ever come away without a diagnosis? One of my biggest fears is misdiagnosing him or diagnosing him too early with something that stays with him, like ASD. I am fearful that someone as specialized as a Developmental Pediatrician may over-diagnose because they are like a hammer and they see everything as a nail, even if it might actually be a screw or a bolt... If that makes any sense at all.
I understand. I asked this same question. When we visted our pedi at 19 months, he said that yes, there were some red flags. He did this demonstration: he gestured quickly at a painting of a cartoon tiger and said to DS in astonishment "Look at that!" DS looked away, uninterested. I argued that he just wasn't being direct enough- I stood up and pointed directly at the tiger and said to DS "Look at this tiger, DS!" DS looked at it- but the doctor pointed out that DS was only looking at my hand, not the tiger. It was very subtle. I argued that DS didn't have "special interests" like many kids on the spectrum (trains being the stereotypical one I expected) and the doctor chuckled and said "really? He seems awfully interested in that light switch!" He was right- lights and hoses were his obsession. So I admitted then that yea, we should get him evaluated by early intervention- we did, and they found all the same red flags and they said he was "at-risk" for ASD. I was devestated and asked them if there were any chance they might have gotten it wrong. I will never forget the look on their faces (3 women): she said cautiously- well, yeah, we've been wrong." But I could tell they didn't think they were wrong. They all quickly started telling me that it wasn't as bad as I feared- and offered anectodal examples of kids they know with ASD who only needs extra time on his AP chemistry exams.
So anyway- 6 months after that we had a follow-up with the same pedi (so around 26 months) DS had a language explosion and he was chatting away, all cute and engaging. I was still stuck in the denial phase but had moved onto- well, okay maybe he has some delays but clearly he's going to "grow out of them" and be "fine" by the time he gets to kindy. The pedi said to me that schools were casting a wide net by sometimes "over diagnosing" (he used that term) kids to get as many the early intervention services needed as possible. I live in the Twin Cities which has a disproportionately large amount of kids on the spectrum- something like 1 in 38 in my district (specifically whites and Somalis). So while some may say that it is "over diagnosing" I can tell you that at age 6 there is no way my kid is not on the spectrum. Some of the really obvious stereotypical signs started emerging at 3 (stimming, scripting from cartoons, and general quirkiness). Some fell away, others emerged. We moved on to a developmental pediatrician who was much more pragmatic and when I asked him if he thought the ASD label was wrong or overused he basically challenged me and said "Why does it matter?" In other words- your kid has some delays and needs services, why quibble over the label? He was right. As DS has gotten older it is true that he still has some ASD characteristics, but it is actually the sensory and anxiety pieces that affect his day to day life. For example, he's very bright and scored well above average in all his academic subjects this year in kindy (off the charts in math- something kids with ASD tend to be good at)- but when his sticker rips in half he'll have a sobbing meltdown and have to leave the room. He gets too close to other kids and can't stop squeezing them or trying to chase them- a sensory seeking behavior and also his inability to strike up an appropriate conversation. Only the kids in the ASD classroom really reach out to play with him, although other kids seem to tolerate him alright because he's generally pleasant and happy.
Sorry to ramble, I just know how it felt back then not knowing what was ahead. Try not to worry about labels. At that point I really just tried to get through each phase and see what emerged next. I don't think anyone is going to "pigeon hole" your son. He'll do whatever he wants!
First of all, hugs. You've done a great job getting a lot of services for your son through EI. Our EI team was incredibly helpful in giving us advice on whether to have our DD formally evaluated, when to apply, which centers and physicians have great reputations, what to expect at evaluations, etc.
Regarding whether developmental pediatricians always diagnose, I can only speak to my experience with my DD's dev pedi. At our initial evaluation when my DD was 25 months, we expressed that we were worried that maybe we'd exaggerated some of our daughter's challenges in our minds. The pedi said that she often sees children because the parents had a good reason to bring them in. There is often a lot of paperwork and quite a wait to see dev pedis and similar specialists, so it's not easy to get there. Also keep in mind that dev pedis follow children with a wide range of difficulties, including behavioral, learning, CP, ASD, etc. And if you take the team evaluation approach many major centers have, you'll get the perspective of multiple specialists.
After the evaluation, ours was willing to take a "wait 3-4 months and see" approach if that's what we wanted, or she offered to give us an ASD diagnosis right away. She said she was comfortable with either given what she'd seen of my DD and what we reported. The way the dev pedi explained it was that DD may have ASD, in which case the treatment we'll obtain for her is necessary. Or, she may not have ASD, and her issues are more of a developmental delay that will eventually resolve, but the additional therapies we could obtain with the diagnosis will still be effective in addressing those issues.
The pedi said that occasionally children do "outgrow" or lose an ASD diagnosis, meaning it was never really ASD to begin with. So we weren't particularly worried about getting labeled for life if ASD wasn't the right diagnosis. We elected to get the diagnosis because it opened so many treatment options for her, but I was also ready to hear ASD. I still sobbed in the car on the way home, though, because it was incredibly hard to hear despite knowing it was the right course of action for us.
Hang in there. This is a journey that no one wants to go down but there are some great communities out there (this being one of them) that can help in this journey.
Eli 6.18.09 35.5w
Silas 1.25.13 35.4w 10 days NICU, allergies/asthma, gluten intolerant
PP's have recommended to go to a developmental pediatrician to evaluate. I would have if I had one in the town I live in.
In my experience, we went with a psychologist to evaluate DS first when DS was about 3. They can also evaluate delays and can give diagnosis. You can go there if you seek a second opinion.
We went with the school district for a second evaluation and for his needs to be met at school. His needs were affecting his learning at preschool.
And our final evaluation was done last year when DS was 4 at a University hospital that is known for also formally diagnosing individuals within the state of NM.
I wanted to hear otherwise the second and third evals that after so much therapy ASD was no longer there. All three evaluations have concluded ASD.
You are already a good advocate for your DS. You have in place the therapies he needs now and that is important.