So worried - autism related

uggghhhh, i don't even know why I'm posting this --- maybe just because I need to get it out and it's hard for me to talk about it with DH and the rest of my family.

DS is 20 months -- he's been involved with EI first for a gross motor delay and now for a speech delay. However, instead of them giving him a speech therapist he is receiving special education first. I've posted before, I love the therapist. She see's him for one hour a week and is very attuned to his ways.

I'm too exhausted right now to post everything that makes me think he has tendencies...but he does. I'm just so frustrated right now because between his ped. and EI they've never actually told me straight out what they think is going on. Both parties know that I have concerns. And while they do say that his evaluations appear to be ok...what they have not said to me is that he's 100% not autistic or on the spectrum. He's only getting services for an hour a week. I wish it was more often.

I played phone tag with the therapist on wednesday and still have not talked to her since. She sees my son at daycare so I'm not there to get the recap. I just need to talk to her or someone about him. I need peace of mind. I've almost in my head have myself convinced of it and at this point I'm dying inside because I feel like they're not taking me seriously. And i'll be the first to admit that i'm extremely neurotic. And maybe it's transcending into this situation. But can't they just give me something. Whether it be some relief or some validation. Just something.

I know the thing to do is to call them on Monday and talk to someone. But of course it's Friday night and now I'll have the whole weekend to stew in this.

Thanks for listening if you're still with me.

Re: So worried - autism related

what are some of his tendencies that you are refering to...how old is he?

Re: So worried - autism related

Re: So worried - autism related

Did EI ever do a psychological eval? If you also have concerns, you can take him to a developmental pediatrician or a neurologist to rule it out and give you peace of mind!

Re: So worried - autism related

My cousins son showed some signs of autism when he was very young. By the time he was 2 he was getting EI services (occupational and speech) but more than 1x a week. I definetely do not think that is enough. He got services at least 3x's a week. When he was 3 my cousin sent him to a school which specializes in children with disabilities somewhere in Suffolk. By the time he went to kindergarten he was main streamed and to this day you would never know. They "thought' he has PDD which I believe is on the lower end of the autism line.

I would definetely push for more services. IMO 1x a week is not enough to make an impact. Plus they should be assigning you tasks and "homework" to do throughout the week.

Re: So worried - autism related

The woman I spoke with at EI told me I can call her ANY TIME - day, night, weekend. I would call her today when maybe she has more time to talk to you. At least give it a shot. If she can't speak to you today, maybe you'll be the first call on Monday morning.

Re: So worried - autism related

Thanks ladies, I guess I should sort of list the things that he does that have me concerned. He's 20 months by the way. There are some moms on here (the NJ girls) that know my son and I know it's probably not presented when we GTG but some of these things are subtle and I am just aware of.

Eye Contact -- Matthew does give eye contact but only if he's interested in it. There are so many times when I call his name and he doesn't look at me. Usually because he's into something else. And when he's into something he's entrenched in it. But for example, when we're driving home from daycare i always try to get him to look at me in the mirror while i'm driving and sing and he acts like I"m not there. More interested in looking side to side at the traffic.

Pointing -- this has been a long battle to get him to do it. That was one of the main things his therapist has been working on. He's had these services for 3 weeks. It's getting better. He now points to what he wants. And if he doesn't I form the point with his hand. However, he doesn't point if I ask him where something is. He looks at it. He does follow my point now.

Reception --- he understands everything I say. knows what to do when I say bath time. Night Night time. Puts things in the garbage if I ask him. Holds my hand now when we're walking which was a battle. I'm not too much worried about this speech part.

Gross Motor - didn't crawl until after his first b'day. Didn't pull to stand until 13 months. Didn't cruise until 14 months. Didn't walk until 16 months. Since then he's an old pro except he's clutsy because he doesn't watch where he's going. He likes to look down. He can only walk upstairs if i hold both of his hand. Same thing for going down. Not so much concerned anymore in this area.

Fine motor --- he's very good at. Can stack at least 8 blocks. Very good pincher grasp. Can do puzzles. Shape sorters. Loves coloring. Loves his magna doodle. Not concerned on this one either.

Obessive Compulsive -- he's obsessed with phones. I know many will say that's normal for a toddler. But he takes it to a new level. Trust me, daycare tells me all the time. His therapist too. She's working on desentitizing him to it. Same thing goes with doors. He's obsessed with opening and closing. Anytime he sees anything open he needs to close it/slam it. He'd much rather play with a phone or door than any of his toys. He also likes to walk up and down inclines and ramps. He likes to walk up and down on and off of sidewalks. And he would do it for hours if I let him.

Speech -- he said his first few words very early...like 8 months. Cat was the first. he articulates very well. While he hasn't lost any words he doesn't have many new ones since then. He says dada, cat, hot, all done (only when he's done drinking, not eating), apple, and I think he says cup now. He doesn't call me mama or dada. I think he calls my DH dada but it's hit or miss. He doesn't imitate anything I do or any words I say. He doesn't point to body parts and I know he has to know them because I've been drilling it in for months now. Same thing for animal sounds. He doesn't point when I ask him where is something. he only recently started waving hi and bye because his therapist had worked on it with him. This is despite the fact that I also was working on it with him for months. He's very behind here.

Arm flapping --- he started this very recently flapping his forearms. I don't want to be naive about it but part of me kind of thinks this is how he waves because we've been doing this a lot lately to teach him how to wave. I don't know.

Affection -- he's affectionate to the people he knows. He has extreme stranger anxiety. He doesn't like other kids really. This one has been a hard thing to gauge because usually when I'm around I"m all he wants and maybe that's why I think he doesn't like others. His daycare teachers say he's participating now but I can never tell if they're just placating me because they know how paranoid I am.
Having written all that I totally know that some of these are normal for toddlers. And that might be why I’m not getting definitive answers either way. If they’re ruled out autism I’d rather they just say it.
Thanks so much for reading and responding and for the FM’s. I really appreciate it!

Re: So worried - autism related

Did he have a psychologist eval? Our's told me 15 min's into our eval....your son 100% does not have autism, just so you know. So I know they are OPEN to talking about it...KWIM?

I would just be open and ask...ask everyone what they think. Are they witholding a diagnosis till further evaluation or what?

Re: So worried - autism related

Re: So worried - autism related

Whenever we have therapists come into our day care the parents bring a notebook and they write notes to each other. Maybe see if they would be willing to do this. It will keep the lines of communication open so you don't have to play phone tag so much.

Re: So worried - autism related

Donna -- he hasn't had a psych eval.

Stacey - she always gives me a detailed note on what he did that session and homework. And we talk after the session to. It's just that this session, when I actually was going to bring up the hand flapping and stuff, we played phone tag all week.

I've decided that I'm going to call her on Monday and then meet her at daycare on Wednesday to talk face to face.

Thanks

Re: So worried - autism related

In addition to what I wrote in my FM, I would contact EI and request a psych. evaluation. It can't hurt. I don't think you can rely on the speech therapist to determine if she sees signs of autism. That's not really her specialty even though I'm sure she services children with autism. Although, it might work differently in NJ, your best bet would be to contact your service coordinator directly.

Re: So worried - autism related

Things are delayed but this is not neccesarily autism, I would have an eval doe. But some of those things describea many kids-obsessed with phones, closets etc, lack of eye contact when they are interested in somehting, kids ignorew you when you clal if they are into somehting...could be but also may not be, def. get a profesisonal opinion...have you been on some autism sites to talk to some parents about early signs....I could be way of fhere but I though many autistic kids hit their milestones up to 2 and then they start seeing signs, like i said im not sure about that...

Re: So worried - autism related