Looking for some advice & support

Post Reply New Topic

Hello,
I recently took my daughter to a child psychologist who specialises in ASD and she believes that she may have PDD-NOS, and is also concerned about my toddler son's pattern of development. She also thinks I am on the spectrum, without question. I self-diagnosed years ago when I was studying special education at university, but never took it too seriously until recently. My whole life seems to be on constant replay in my head, and has been for weeks now, looking through these new "eyes" I have since seeing the child psych. I feel a mixture of relief as well as anger, hurt, resentment etc regarding my own life, and such fear for my child/children (which I feel constantly anyway but now it's even worse).

I have seen a counsellor for over 5 years, and a psychiatrist for the last 12 months or so (for Generalised Anxiety Disorder, Post-Natal Depression, Panic Disorder, OCD - I also have some impulse control issues as well but I've always been to embarrassed to discuss these with anyone) and no one has ever picked up on anything with me. And everyone I've spoken to about my daughter has just said she is extremely bright and has a lot of energy, very unique, exuberant etc etc. A paediatrician I took my son to (at about 10 months; he is 15 months now) regarding some gross motor issues, separation and stranger anxiety, fear of loud noises, sleep difficulties, constipation etc, basically told me I was being ridiculous and I clearly knew nothing about ASD. He said that children with Asperger's do not have gross motor issues, only Autistic children - I have read that they in fact do, in numerous reputable sources and the child psych also said that they can have gross motor issues.

So my daughter is booked in to see a specialist paediatrician next month, is in the process of having an OT assessment, needs a speech therapy assessment done, hearing and eye tests. My son is still not crawling or walking at 15 months, appears to have low muscle tone, still has noise and "people" issues and bowel issues. But he is doing very well with his fine motor and intellectual development.

I am really struggling with myself too and I don't know what I should be doing at this point, with myself and my son. I am doing all I can for my daughter at present I think.

I guess I am just feeling really lost and no one I've confided in about any/all of this has been very supportive. My parents are supportive with my kids but they don't really acknowledge my struggles very well. And as is typical in mothers' groups, it is either a competition to see who is worst off or they pooh-pooh you as if you are making it up or that their kids do the same things, the list goes on in that department.

I hope someone can help me out here. I'm so angry that 4 years have gone by (at myself, and those I reached out to trying to get help) and my child is due to start school next year, and I'm only doing something about it now - it wasn't that I didn't WANT to know about it, as I have suspected this of my daughter for years now, but I guess it's easy to listen to those reassuring you that your child is "normal". And I'm so angry that I have struggled SO MUCH my entire life, had 3 depressive/suicidal episodes in the last 6 years, and no one has ever picked up on anything or tried to help me further.

ASD connects ALL the dots that are and have been troublesome in my life, and it also does the same for my daughter in her short life. I am not chasing a diagnosis for the sake of it (as I have been accused of doing - grrrr), but I am just looking for information and support first, and validation for what I feel I already know and validation for all the struggles I've endured. From the outside, it looks like I have the perfect life. I've been torn down by people for being "perfect" (mainly in primary and high school and university, but it still happens now at nearly 30 years of age), when all my life I have felt that there is something very wrong with me, inherently, unchangeable.

Thanks for "listening".
J.

Hi and welcome to WP. I'm sure you'll find a lot of advice and support on here. I'll keep this brief as this is the intros forum, but I'd just like to say that you sound an awful lot like me and your daughter sounds just like mine. She was actually already at school and 4 1/2 before we started asking questions, although she has always been a tremendous amount of work. We have a parents forum on WP, which I've found to be very helpful and has seen me through some really rough times. Most of the other forums will be of use too, as you, like me, suspect that you are on the spectrum too. I look forward to reading more of your posts. xx

Welcome. The first thing is to move past the anger and realize that today is day one of a new start. We can all get caught up in what should've been done, but that doesn't help us move forward. You seem to be on the right track with getting an assessment for your daughter. Start with her and then move on to your son and yourself. You will most likely get a lot of help/ideas for your daughter that you can use for you and your son also. Perhaps look for an Aspergers/Autism support group where you live - they will be much more sympathetic and helpful. Also, this forum is a great resource.

Good luck!

Thanks so much for your kind words. I am really looking forward to what this forum has to offer.

Welcome to the forums. ^^

It's sort of a nice feeling though, isn't it? You guys aren't alone.

hi J, and welcome to WP

A few other things...

First, that pediatrician is definitely wrong about aspies not having motor issues. Those frequently go hand in hand, at least that's what my internet research tells me.

Your 15 month son's early tendencies (late crawling/walking, low muscle tone, noise and ppl issues) sound like he might be on the spectrum. I'm not diagnosing of course, just my opinion.

I recently self-diagnosed myself as an aspie. I've always thought something was different about me. I've been to a number of therapists. I majored in psychology in undergrad and naturally learned a lot about mental illnesses., and though some looked possible for myself (OCD, ADHD), nothing ever really clicked. I first found out about asperger's 6 years ago, and I remember it making sense initially, but I think I didn't fully admit it to myself all these years until now.

I also felt like most people considered me to be normal, up until after college, when things fell apart fast.

Anyways, I'd be interested in chatting with you. Feel free to pm me.

Welcome to Wrong Planet!

Welkome to WP

Mick

Well, I guess it's probably time to move on to other parts of the forum now that I've introduced myself.
I am blown away by the connection I feel, the validation - since we went to the child psychologist, I feel like a massive light has gone on in my head and I'm seeing everything through new eyes: my past, every thought I have in the present, and all my thoughts about the future. Both relieving as well as terrifying.

I can't believe it's taken me til nearly 30 years of age to get to this point. My biggest disappointment is that no one has picked up on this sooner. Even the psychiatrist I started seeing about 12 months ago (who should have been able to be much more objective than my counsellor, who I had been seeing for 6 years at that point and whom I have become quite close to) didn't pick anything up. All these supposed "disorders" that I've got, plus ones I've self-diagnosed but been to embarrassed to admit to, and no one ever thought to try and connect the dots. That's what I've been turning myself inside out trying to do, with myself and my kids - connect all these dots that are keeping us from having a productive, peaceful and happy life together as a family, and as individuals. I even went to my shrink and asked her if she thought I could have Bipolar Disorder, and I even asked myself if I could have ADHD too. I've gone from feeling like a fatally flawed, crazy, weak person to.... well I'm not sure, haven't worked that one out just yet. It's only early days. But I do feel a hell of a lot better about myself already knowing that I am not crazy and stupid and going to continue to struggle like I have done my whole life, for the rest of my life.

Thanks again for listening.