20 month old w/ suspected ASD. Questions, and waving hello.

AshleyDehaven · September 2014

I posted once a few months back, but wanted to reintroduce myself. I have a 20 month light of my life little boy who doctors, and EI specialists suspect is on the spectrum. I agree with them. That didn't used to be easy for me to admit when i first started suspecting (6 months ago), but as time has gone on i have come more to terms with the possibility. We have just been referred to the Seattle Children's Hospital for formal testing, as well as as the WWU Auditory department for more intensive speech therapy, and a specific occupational therapist, to supplement the services he is receiving from EI. I guess my question is, what is the formal testing like? And how long does it *typically* take, i am sure there is some variability. Thoren is, at this point, still largely non-verbal, and show's no understanding yet of receptive language, though he used to. He is my favorite person in the world, he is smart, and has a sense of humor a mile wide, but like any mom i worry sometimes. When i say his name, or call for him, my one time out of every 100 he acknowledges that someone has spoken to. He doesn't come to his father or i when asked, and at home that is something easily worked around, but out and about.. I just worry sometimes. Kids are fast, and smart, and he is no exception. He got out of a hotel room a few weeks back, and made it 30 feet away to a vending machine alcove and didn't make a peep when called for. I found him immediately thank goodness, but now i never ever take my eye off of him. I guess i am wondering if people have had success with breaking through and finding a way to communicate when it is important to come to us? That is probably such a loaded question, i am just so new to this whole.. World. Thoren is our first, and our only, and i want to do the absolute best for him. So any advice at all you have for navigating all of this would be very welcomed. Thanks for taking the time, i hope you're all having good nights, and i look forward to getting to know you all.

Junebug060609 · September 2014

Welcome.

My DS started getting services at about Thorens age. They dropped the a-bomb on us a day before he turned 21 months (official dx at 27 months). Due to a move cross country, DS had a break in therapy... but a few months in a public school program (DS is nearly three now) and aba therapy seems to be helping his response when we call him. He now at least looks at me half the time. Coming when called is spotty, but it happens...his receptive language has really taken off in the last six months, which has helped that immensely. If he's outside and running off, he'll sometimes stop long enough for me to grab him. It's getting better. Slowly. We do a lot of hand holding and strollering still though. I also had a hotel incident with DS at 26 months. We do that upper lock thing now.

That got long, but I wanted you to know you weren't alone.

funchicken · September 2014

No advice, but I wanted to say welcome to the board!

Unknown · September 2014

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abigail912 · September 2014

Welcome! DS will be 3 in January and just started to respond to his name but still has trouble with following one step directions. We started ABA in July and his communication skills are improving everyday. I understand your fear of him running off. DS LOVES being outside and in water but has no sense of danger. We have learned that we have to keep the screen door locked or he will run outside by himself. Being around water is hard. He wants to get in the water no matter if its a creek, pond, pool, river. If we are around water I have to hold him which usually results in a tantrum because he wants in the water so badly. So, unless I'm in a swimsuit ready to get in the water with him, we avoid being around bodies of water. Hopefully one day this will change but right now we just have to keep a very close eye on him. Luckily, he still enjoys being in a stroller when we are out in busy places so that helps.

hopecounts · September 2014

hugs we didnt get DD's diagnosis until almost 3. ABA has been amazing for her in teaching her things like trespond to her name when called, not to run off (one of the first thjngs they worked on for safety reasons) etc. DD went from non-verbal to verbal from ages 3-4 with ABA and Speech therapy. receptive speech is stil, a work in progress but we are seeing lots of growth there. one thjng some parents have luck with in the pre-verbal days is using a printed off and laminated stop sign on doors kiddo is not to go out of. Tape it up on a door he tries to open and watch closely catch him opening it stop him point to the sign and say NO! Stop! repeat and repeat and repeat until it clicks for him. as well as extra precautions like blocking/barricading doors and teaching hold hands which may need to be wrisits at his age if he is a kid who doesn't loke having his hands restrained.

bumpuser511563 · September 2014

Welcome to our board!

AshleyDehaven · September 2014

Thank you ladies! This gets overwhelming sometimes, so I'm very glad this board exists. I feel a little like I'm handing it alone.. my husband is still holding out hope for just a speech delay, and my parents.. well they think I'm insane. I hear from them daily that "every child is different", "he's just a late talker" "he's just independent" . Every time i say the a word they get exasperated or roll their eyes. DH isn't like that, but i don't think he's allowed himself to even truly consider that Thoren could be on the spectrum. He comes up with all these excuses for the delay, and i get it. I truly do, because this is hard and sometimes painful. But he supports the therapy and EI, he's so on board and wonderful, but just doesn't think ASD possible. My family would have him yanked from services if it were up to them. Sigh... am i always going to feel this isolated? I'm just doing what i truly feel is best for my son.

SantoriniSteph · September 2014

After a couple months of evaluations DS was Dx with ASD at 23 months. I pushed hard for services and with some luck we started them the next month. We were the same with non-verbal and no receptive language. We did ABA, Speech therapy, and a special ed class for a year. When he turned 3 we went to the public school for services and have had a great experience because of his amazing teachers. He gained receptive language and at 3 1/2 he is babbling more than he ever used to.

Keep doing what you are doing, there is always hope. Hard work, and hope.

Hiccup15 · September 2014

Welcome.

AshleyDehaven · September 2014

Do any of you ladies home school? That is what we are leaning toward, because our local school system isn't up to standard in my opinion (long, complicated history there). I am just wondering how that works with a child on the spectrum, since i know a lot of the services here go through the public school system. Does it make it more difficult for LO?

SantoriniSteph · September 2014

Home schooling isn't an option for us. But we do have experience with in home therapy, and we weren't really fans of it. It works great for some, but didn't for us. The year he was two we had him in a special ed class 2 days a week, DH was home with him Monday and Tuesday, and my mom watched him on Fridays. The ABA therapists came to our house. Personally I prefer to separate home and therapy, I think DS is happier having those boundaries. You are also dealing with insurance and the ABA company billing wrong. I'm still trying to resolve the billing issue from 2013. It was really nice for us to move to the public school and not worry about the insurance side of it. We really lucked out in getting great teachers though.

AshleyDehaven · September 2014

All of our therapy is in home right now, and so far it is working for us. Soon though he will be starting additional OT and ST out of the home, so once a week he'll have in home therapy with his ET, then one day a week at that neural development center with an OT, and one day a week at the auditory center at the university for ST. O_O I guess we will see soon which one works better for him and be able to better make a decision from there. I just know for certain that public school here is not an option for us.

I don't know how things will change with all of that after his 3rd birthday though.

We just got the letter from the Autism center at Seattle Children's, we're on the list for testing..

hopecounts · September 2014

the services offered by our school system are far less then robust, we still use them and then supplement it reduces the amount we need to supplement while reaching our personal goal of 25 hours of therapy a week (therapy defined as direct therapy and school setting).

In my opinion home schooling can feed into some of the issues associated with ASD (primarily peer interaction and ability to function independently in a structured setting) plus sometimes its good to have people without mommy goggles directly involved with the kiddo to see things we might miss.

But that is just my personal opinion you do what you feel is right for your family, if a child is not enrolled the system I do not think that the system has to provide services to said child in many cases.

As a preschooler you can likely get the services on a 'out patient' basis and decline a classroom setting.

bumpuser511563 · September 2014

Homeschooling would be a disservice for DS. Also I work and it would drive me crazy.

He is in a public elementary school that has an ASD kindergarten with some time spent in the mainstream kindergarten and the rest of the time in a mainstream daycare. He has ST, OT, PT, and SW at school. Even if I was not working I would pay for daycare to give DS that experience.

My biggest concern are his speech delays and what better opportunity then to make every possible mainstream opportunity to practice speech at school.

There was one mom in our ASD support group that home schooled her boy from 3rd grade-6th grade due to bullying. The whole group convinced her to put him back in public middle school.

AshleyDehaven · September 2014

You ladies have made some incredibly valid and good points, i guess it is time for us to start thinking long and hard about looking into other school districts, and the possibility of moving. We had already been considering relocating to Seattle to be closer to more intensive services, so i will start looking into their school systems, and programs. I am sorry if i come off as under educated in all of this, but the fact is, that is all very new to us. I am just trying to do what's right for him, and half the time i have no idea what that is. As to the question about my ability to home school i am pursuing a degree in education, and i started that process for the very purpose of being better prepared to home school, because that had always been our plan. Best laid plans and all of that. Again, you have all made very good points, thank you.

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20 month old w/ suspected ASD. Questions, and waving hello.

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