DS diagnosed with autism

Last week my 16 month old DS was diagnosed with autism. Originally I was having him evaluated for speech, since he mostly hums/grunts with minimal vowel sounds. The speech evaluators came and suggested a psych eval, and long story short, in came his diagnosis.

It's not hard to believe since autism runs on my husband's side (my DH has Aspergers as well). I've spent the week with an influx of emotions, between bouts of crying and moments of calm. I'm not upset over the diagnosis, but more so that I'm terrified that I'm not going to do something right by DS in some way.

The agency called to tell me that they are recommending him for EI speech and ABA services, and they want him tested for OT (focusing on socialization and imitation play). Initially they said they wanted him to have 20 hours a week of ABA, then have speech 3x a week for 45 minutes and then adding on possible OT.

This seems like a LOT to me. He's only 16 months old! We need a life outside of this house, and I have a sick mother with MS that I have to take care of on top of it all. It's all just so overwhelming.

I sort of want to hold off on the OT for now, do the speech and maybe 10 hours of ABA services a week? That's still 2-3 hours a day of someone coming into the house to work with him. I guess my question is when your child was initially diagnosed, how many hours of services did you give them in the beginning?

I can see improvement in him in less than a week with just me working with him. Where as before he couldn't make eye contact unless it was on his terms, he's now coming to me and looking right at me for a lot of things. He's coming when I call his name now, where as a week ago I was seriously wondering if he was deaf. Even last night in the bath we started making the 'B' sound from watching and imitating my facial movements.

It's hard for me doing this on my own, I'm filled with so much self doubt. I have my MIL telling me not to get DS services at all - that she didn't get any for my DH and he turned out successful. But when I initially met my DH, he couldn't hold eye contact at ALL. My mother and I had to train him for job interviews to look at us in the eye when he spoke. He's so much better now, but that was /us/ doing it when he was already in his 20s. Not to mention he was so unaffectionate in the beginning (and my family is one of those old school european style families that hug and kiss and get together simply because a flower bloomed). He did learn, and now gives everyone a hug and kiss when we walk in a room. Maybe that could have been avoided if my MIL got him EI services when he qualified at 24 months.

Sorry this ended up being so long. I guess I just needed to vent a little as well.

TIA

Re: DS diagnosed with autism

I felt a lot of what you are describing in the beginning. It's a lot to take in all at once. My DS was already getting speech and PT 2x a week when we got his diagnosis. He started in a half day school program (he was a little older than your DS is now) and he got 10 hours of ABA in addition to the speech and PT he was already getting and 2 hours of OT were added not long after that.

I am not going to lie, in the beginning it was hard juggling everything. I work FT, so he got many of the services at school or daycare, but we had the 2 hours of OT at home, and about 3 hours of ABA/parent training at home. I thought "how am I going to do this after working all day?" But, you do not need to be in the room when he is getting therapy, and generally they prefer that you not be in the room, because they can usually get more from the child if mom is not right there. I was usually in another room where I could listen in on the session, but could also get stuff done around the house. So when they were in the playroom, I used that time to clean the bathroom or kitchen or do laundry. Once we were in a routine and had a set schedule, it was much more manageable. I got my house stuff done during therapy and went out of the house when he was done.

Also, EI is giving you a lot right now, but this is temporary. Once he transitions to CPSE, or preschool services, in the school district after he turns 3, generally some of the services get cut and/or he will be in a school program and they will want him to get the majority of his services there. My advice is take everything they are offering you right now, I think it will make a difference. The year and a half will go by quickly and things will get easier in terms of scheduling things and getting out.

I don't think I have ever spoken to a parent who regretted taking more services than they thought they might need. :)

ETA: you should also ask your EI coordinator about school programs and when he would be eligible to start one - they do have EI preschool classes.

Message edited 3/21/2014 10:22:02 AM.

DS diagnosed with autism

In the beginning, it's very hard. Do your research. Even though I don't agree with everything Autism Speaks does, they do have a great website and tools to help in the beginning. Try to find a local support group so you have someone to vent with and get some ideas from people that have BTDT. Even though your child is not in school yet, check out your local SEPTA as a lot of them have parent networking meetings and you'd be more than welcome there. You will be getting unsolicited advice from a lot of people (your MIL) and try not to take what they are saying to heart. Do what you feel is good for your child as each child and each case of autism is different.

As far as the therapies, I can not stress enough how therapies started at a young age can only help the child. Take everything they are giving you and depending on how he is doing, get more. It is a full time job juggling all the therapies but it pays off in the end. In the beginning you may thing you are "stuck" in the house but once they get into a routine you can definitely have your ABA therapists do things out in the community. I had my ABA therapists go to book clubs, mommy and me classes, dance classes, the supermarket, etc.

Good luck and if you have any questions, ask away : ).

DS diagnosed with autism

Thank you both so much for replying!

I meet with the coordinator on the 31st, and we will go from there. I do agree with giving as much service that I can for him, I'm just so nervous about how Im going to do it all, including taking care of my mom who I do not live with yet. I may even ask for services like speech and/or OT be done at her house in the afternoon - because there is no way I can leave her all day.

I definitely want to do as much as we can for him, and then worry about when he transitions to CPSE when he turns three (the goal is for him to come to work with me, as I am a montessori teacher. Although I do understand this may or may not work out).

I guess it's just overwhelming, like I said, and I needed people who understand it all to just talk me down from my anxiety. I'll look into support groups because I could really use that right now.

Thank you both again.

Re: DS diagnosed with autism

yes, very overwhelming. Looking back I felt bd for the first therapists my DS had. I would have these little crying outbursts with them when just talking about things in general. I hd just learned I was pregnant when going through all this with DS so I was extra emotional. I agree to get as much services now, the earlier the better. I'm pretty sure you will not have problems having services elsewhere other than your home. If you find special Ed preschool I recommend using there EI class and have all the services done there if possible as well.

DS diagnosed with autism

I have cried on the phone and in front of the evaluating therapists already, lol, they're in for a fun ride with me.

I will cross the preschool path when I get there. I know there is an agency across the hall where I work that offers classes that he will need, so that's always a possiblity.

I just never imagined how much this all is to take in. You ladies are my idols.

DS diagnosed with autism

DS was diagnosed at 2. He was enrolled in DDI after. He receives speech there as well. He goes to school 3 days a week and 2 days a week he has SEIT at home. We have been. Doing this since December and he has made tremendous improvements.

He was diagnosed by a developmental pediatrician. County psych did not agree. Issue will be revisited but they approved additional services.

Re: DS diagnosed with autism

Don't worry about crying, I think these therapists have seen more parents cry than not I know that I have cried in several IEP meetings, even when we got everything we wanted or got good news!

DS diagnosed with autism

There are many parent support groups out there. I work in the field and as a professional I reccomend getting every hour of service you can. As for support look to Just Kids in Lindenhurst if that is near by. I can also recommend some other resources. fM me if you have questions or need support!

DS diagnosed with autism

I've been searching for parent support groups and I haven't had much luck finding many, so I'll look up that one you mentioned for sure.

This week has been much easier on me, I've actually spoken to several of his soon to be therapists without crying, lol. The overwhelming feeling is getting better, especially after talking to you guys and my friend who is an ABA therapist in Colorado.

Thank you everyone for the kind, helpful words and the support. It means the world to me.

Re: DS diagnosed with autism

I just wanted to say that I can totally relate. My DS who is 19 months was diagnosed yesterday. I don't know how I am going to juggle all the therapy as just getting speech therapists in has been hard to schedule as my husband and I both work FT and my husbands schedule is always changing due to the nature of his job so DS is always somewhere different each day of the week. I am still waiting to hear how much ABA therapy he will need, but I think it is better to start as early as possible. I know it is very hard to hear but yes it does feel better to talk to other moms in the same situation

Re: DS diagnosed with autism

You are going to see tons of progress with ABA and all the related services you are being offered. It is a little overwhelming at first but you are doing the right thing by Your baby. His brain is changing now! Now is the time. FM me any time you have a question.

Jackie

Re: DS diagnosed with autism

Also I'm not sure where you live but the Elijah school is a great resource for parents offering workshops, groups ask services.

DS diagnosed with autism

Thank you both for the replies!

We finally have his ABA and speech schedule down and I hope we will be starting by the middle of next week. I can see things starting to change in him, both for the positive and negative, so I am both apprehensive and excited for his services to begin.

I'm still nervous, but I know this is for the best. Is it a lifestyle change? Absolutely. But as you all said, it's in his best interest and this is the age where it'll be most affective. I can't wait to update with his progress.

Message edited 4/4/2014 8:49:54 PM.