at a loss...

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I am the mother of an almost two-year-old and am gradually noticing my toddler may be different. low-muscle tone assessment at 6 months? check. extremely verbal (bilingual in fact) but often chatting about some favorite topics such as turbines, washing machines, and wheels? check. odd intonation (talks as if every sentence is a question) and sometimes repeating back what I say? check. that, however, is not what brought me here. noticing him on the playground these past months, i've been feeling increasingly sad: he literally avoids getting close to other kids, only looks at me, asks me when he wants other kids' toys, then grabs the object and runs away in a corner with it. if someone gets closer, he takes a step back. and, if left to his own devices, he could spend an hour putting a toy through a hole, telling me over and over again it's like a washing machine.

i don't know what this whole thing means, but i'm at a loss. do i push for an evaluation? do i wait? i already know how much pain i caused my partner when i insisted we get him checked for low muscle tone, how much we fought back then and how guilty i felt because of what to him looked like 'wanting to find something wrong' with the child.
but most of all, i came here because i need to hear good stories- about how everyone is coping and to find hope that, no matter what happens, my little boy won't suffer, that he will find friends and be loved and understood in the future by others like i love and understand him. Thank you so much for reading this.

early therapy may help, so an evaluation would be worth the effort.

Maybe if you say to your partner that you really love that he sees your child as perfect, and that you also share that unconditional acceptance. It is not about finding something 'wrong' with your child, it is about helping him thrive to the best of his ability. That, although you agree, there is nothing 'wrong' with him, you notice that he is struggling on the playground, and because he is struggling you would like to explore how to support him better. Much like a kid who kept falling off a bicycle might need assistance to help him balance.

I don't know what your description of your child means either, I am in the process of trying to get my 6 year old evaluated for ASD. I did have him evaluated at 3, we were told he had social/ emotional delays and low muscle tone. He struggles socially, has really weak fine motor skills and melts down a lot. But, I think he would be in a far worse place than if he hadn't been receiving the services he's been getting since 3.

My husband was in denial about my older son's health issues. He has a (among other things) a severe peanut allergy. I watched him (on my own with him) go into anaphylaxis at 13 months, but my husband kept accusing me of 'overreacting' when I would get upset that my husband would leave a Butterfinger on the counter. I think it was too scary for him to accept. He didn't buy it until my son's whole face swelled when we walked past a peanut vendor. He was also in denial about his asthma, he tried to stop me from taking him to the ER when I kept insisting he wasn't breathing properly. Again, I was overreacting and disturbing my son's sleep. I did take him, and he was admitted for 4 days over that attack. I don't think my husband is a bad guy. I think it's scary to look at the issues and easier to deny. Not that your son's issues are life threatening, I'm just wondering if it's your partner's anxiety about something being 'wrong' (as your partner put it) that is preventing your partner from being supportive in this process.

-Fitzi

Let's put it this way: is your child happy? He's going to be asked to socialize more and more the older he gets; does he seem prepared for that? I would start a conversation with your partner that way - you're not looking for problems, you see that your child is unhappy or fearful of other kids and you want to make sure he has the tools he needs to find himself and be a happy child.

I think there are definitely positive outcomes for children on the spectrum (and history has shown us that there were positive outcomes even without intervention - read John Elder Robeson's books, he sounds like he was a lot like your son) Appropriate interventions can make things a lot easier for the kids who wind up fine as adults but who would have struggled through childhood.

If you decide to seek an evaluation, look for someone who is trained to give the ADOS (autism diagnostic observation schedule.) If you can find a multi-disciplinary evaluation that includes speech and occupational therapists, that's even better.

One thing you might look for even if you don't go for an eval (or if there is a long waiting list) is a speech therapist who runs a social skills or social communication group. They have these even at the preschool age, and it can be helpful.

I don't think his behavior sounds all that unusual for a 2 year old. Kids that age often don't play with other kids very well - social play doesn't become very common until around 3 or 4. He does have some quirks that could be early signs that he's on the spectrum, but then again he could just be quirky. In fact, given how verbal he seems to be, I'm guessing he's probably a gifted child (whether or not he's autistic), and gifted kids often have intense interests.

My advice would be to wait and see. If he is autistic, he's obviously quite high functioning if he's chattering about his interests at such a young age. In addition, although early intervention is helpful, research only shows an effect of age at intervention if the age gap is at least 3 or 4 years, so waiting one or two years won't have any long-term effect. And if he's not autistic, you should see him getting more social in the next couple years (even if he remains quirky).

I can give you a story of hope.

When my son was 2, he did a lot of odd things, but being my first, I had no idea what any of it meant. By the time he was in pre-k, I started suspecting "something" was up, but I still didn't know what. By kindergarten, I was well aware that there were issues and I took him to the school district for an evaluation and was told that he was "bright" and that there was nothing they could do for him until he either fell behind his peers academically or could no longer be behaviorally maintained in a classroom. 1st grade was worse. He was starting to have more and more problems managing and interacting effectively with his peers. By second grade, we hit rock bottom. He was a wreck. He knew he wasn't like other kids and he couldn't understand what was "wrong" with him. He wanted to "be good" but he kept "being bad" (impulse control issues). He started saying that he hated himself and that he was evil. That is when I finally gave up on the idea that it might be something he would grow out of (which is what everyone had told me) and got him a proper evaluation outside of the school district. He has ADHD, Nonverbal learning disability and sensory processing disorder. That string of letters---ADHDNVLDSPD--made everything from day one suddenly make sense. I was not a bad mom and he was not a bad kid. Whereas many parents feel devastated when their child is diagnosed, I was mainly relieved.

This part of the story I tell you because in my experience, things don't get better on their own. They get worse. By second grade he had alienated most of his classmates and was starting to get a reputation as a troublemaker even though he is nothing of the sort. I deeply regret that I did not get on the ball sooner and get him help sooner. I feel so guilty that I let him suffer like that.

Flash forward. He is now 11 almost 12. He is still quirky and still has issues, but yes, he has friends. Not a whole bunch and he is not popular, but the friends he does have are genuine friends. They get him. They don't care that he still has stuffed animals and carries asphalt and rocks in his pockets. He is about as well adjusted as I think a pre-teen middle schooler can be. We have our ups and downs, but he is an awesome kid, even though he is not typical and even though I missed those critical early years of getting him help. If I were to be given a choice of leaving him the way he is, or trading his wiring in for a typical version, I'd leave him the way he is. Because to me, he is perfect. The blessings his wiring have bestowed upon him are so much....more...than his limitations. He is an awesome boy and I am certain he is going to be a fine young man.

Oh...and my daughter (ASD of the high functioning variety) used to phrase every statement as a question, too. Every? Single? One? Only at almost two, all she would have never been able to put together a sentence. She barely had any words, and mostly shrieked and squealed. It wasn't until she was in first grade and her brother pointed it out to her that she taught herself to stop.

I do miss it a bit...it was kinda cute, I think!

My son is a high functioning Aspie, and he wasn't diagnosed until he was 7. He was always different, but when he was ittle knowing "why" wasn't that big an issue: I just did what I had to do to meet his needs, like hire a one-on-one nanny for my work hours (just part time) instead of enrolling him in any group care.

We did start to see complications in preschool and kindergarten, however, and that drove us towards assessment.

The thing is, he was and is a great child. That has never changed. What the assessment did was give a road map to the school for how to work with him, and hand us keys on how to deal with things like meltdowns. Without that knowledge he would not be where he is today, I am 100% sure of it. There is nothing "wrong" with him, but he is born with gifts and burdens that must be understood in order for him to successfully navigate life, school and social relationships. He has gotten some great help over the years.

At this moment he is at the national Scouting Jamboree, a gathering of 40,000 that I wasn't sure he ever could handle. And he is attending as both an Eagle Scout, and someone holding a leadership position in his troop.

Next year at school he will be Junior in high school, out of special education and continue only with a 504 accommodation (his low muscle tone means he can't write and must use a netbook in classes). He is an honor's student, active drama club member, and has his little circle of 4 friends who share his interests in gaming that he has lunch with everyday, and Skypes with nightly. Plus all the scouting (he LOVES the outdoors and he loves the tangible structure of scouting).

When he was little and first diagnosed, I had hope he would be OK, because I knew the gifts were there. We had a lot of rough years and sometimes I really wondered. There are no guarantees, but right now - I feel like I KNOW he will be OK. He is different - so what. He is also amazing.

Hi everyone,

Thank you so much for all your posts and kind words of advice. I'm really touched by your comments. Things change for us every day... The odd intonation has disappeared, it seems, but now I'm starting to see what looks like hand-flapping (he does it every now and then while saying the cars go fast, fast, fast...) My instinct is to hug him, kiss him and tell him something like 'and now they go slooowly, slooowly' etc. i.e. make a story out of it or redirect him in any other way. I will talk to our family doctor about all of this, but she tends to dismiss everything I say, so I don't have high hopes in this regard. In any case, he will start daycare in about a month, so I guess that's when things will become clearer. To be honest, I'm terrified that either 1. being in that space, surrounded by other kids will only enhance his odd behaviours and 2. the instructors will one day call me to tell me he doesn't fit in there and we have to look for a different place for him.
The thing is, at home he's so good with us in other regards- pretending to feed us, asking us to read him books, hugging his plush animals (even though they end up on the floor a minute afterwards), singing and recognizing songs - but then there's all the other stuff that seems to get more intense when he's out in a different environment.