My toddler could be ASD - help me cope

[blondeviolin]

I have been concerned about my 2.5yo's development for almost 18 months.  Long story short, I've been concerned for a good 18 months.  I've been through the birth-3 program (worthless), dealt with pediatricians who weren't worth their skin, finally switched to a better pediatrician and now we are getting the ball rolling on seeing a developmental pedi.  I filled out an MCHAT today which was really hard.  I know what the answers are SUPPOSED to be.  I know what his development SHOULD be at 2.5.  With some questions I could confidently answer with what they should be.  Others were 50/50.  And some I answered with a "fail."  All in all, he was supposed to be 2 and under and it ended up being more like a 3 or 4.

 

So now I am feeling a gamut of emotion and questions.  I feel badly for not pushing the evaluation sooner.  I feel frustrated because his first pediatrician was an idiot.  I feel exhausted because I've been really focused on working with him this last week and, while I've seen some growth, doing that is very intensive.  I feel scared because I don't know what the developmental pediatrician will say.  What if it's something else that there is no help for?  I feel dumb because I'm scared of an ASD diagnosis even though that doesn't change anything; he's still strong and stubborn and smart and he's still the same little boy I love.  I feel lost because I have no clue what to expect with the developmental pedi will do.  I feel scared because if it IS ASD, I would like for there to be some kind of intensive therapy (ABA?) and I don't know if that's possible with a baby and homeschooling my older kids.  (I read something that it's like 20 hours a week.  Is that 20 hours I have to be there for?  I don't have four extra hours a day...)  I want to feel hopeful that a diagnosis will give us all tools to help him grow, talk more, transition better, and interactive.

 

Is there a good resource that helped you when you were in this process?  I know about Autism Speak's 100 Day Kit and I'm looking that over.  Is there a forum or something that you frequent that could help out?  (I came here because the WTM is like my internet home.  This is what I know.)  Was there a book that spoke to you when you were in my shoes?  

[Crimson Wife]

ABA is typically 20-25 hours per week at that age but whether you need to be present for it depends on whether you choose home- or center-based sessions. Home sessions you would need to be present in the house but not always in the same room. Center sessions are drop-offs. We do a mix of center, home, and park day sessions.

[texasmama]

(((Hugs))). I just want to tell you that your son is very young. You are not "behind" in getting him services. Of course you are scared.

[kbutton]

:grouphug:  :grouphug:  :grouphug:

 

No wisdom (we had a late diagnosis). Hang in there.

[sbgrace]

:grouphug:  It takes time to process and accept autism. You can't rush that process. It will feel better though, in time. I felt the time when I suspected autism but didn't know for sure were actually harder emotionally than the time after the dx.

 

You are not behind. He is so young, younger than many dx's actually, and the brain keeps on growing and changing throughout life anyway. There is no window of opportunity that slams shut, no matter what you read.

 

 

 

 

 

Edited November 24, 2015 by sbgrace

[KSinNS]

Hugs. You are not "behind" at all. If you are asking questions at 2.5 and getting evals, that's plenty early. The grief and anxiety that goes into this process is just horrible. Believe me I know. When we started seriously asking questions (at 3.5-again he'd been seeing a paediatrician for years for developmental problems but we kept accepting reassurance-autism is tough to see) I cried for months and months. Everyone does. My advice is take a few steps back, and just breathe for a while. Wait and see what the developmental peds has to say. The therapy issues, if necessary, will be dealt with in time, but the thing is, that you will cope. You will set priorities and figure out what your little guy needs, and then figure out a way to make it work. It won't be easy, but you will sort something out. Some people in your situation find home therapy easier, some in a school setting. Both are great options depending on your family and what is available in your area. In that evaluation/early diagnosis period, most people I know didn't think they would get through, but you will. And as hard as it is to imagine, most of the acute pain and grief does pass-eventually, it takes time. I didn't find the 100 days package all that helpful, but I was in complete crisis mode. Many others do like it. The book that got me through was Becoming Human by Jean Vanier (it's Christian). (I actually read it before this point, but I came back to it many times during this period.) Hang in there. You will get through all this.  

[Innisfree]

It is hard, no matter when you find out, but try to relax and breath. You're figuring things out very early, and that gives you a great opportunity for starting therapy and making a real difference. Know that you are already doing a great job. Hugs.

[Plink]

If it is any consolation, what you are feeling is entirely normal. The diagnosis process is hard, and grieving the loss of your idealized version of your child is emotional. ((Hugs))

 

Edited because I should have had coffee before attempting to spell

Edited November 24, 2015 by Plink

[monstermama]

:grouphug:  :grouphug:  :grouphug: 

 

The school district just diagnosed my newly-3-year-old with autism on Friday, so I'm right there with you :)  We were already involved with Early Start for his speech delay, but also found it pretty useless - the therapist we got, though a great guy, was fresh out of school and had very little experience actually working with kids.  If your son is 2.5, have they started the transition process to the school district?  Now that DS is 3, therapy changed from 2 hours a week in our home to a 4 hours a day, 3 days a week drop-off preschool program at our local elementary school.  We've also got an appointment scheduled with a developmental pediatrician (in like 4 months, lol).

 

Are there any particular behaviors you need help with right now?  Maybe some of the more experienced parents here would have recommendations while you're in limbo.

[Lecka]

I have two books I like about the diagnosis period.  It is a difficult time! 

 

One is http://www.amazon.com/Early-Start-Your-Child-Autism/dp/160918470X  I think it has a lot of good information, and is pretty clear.  I have checked it out from the library a lot of times!

 

Then another ----- I like this book a lot, but it is a little more specific, b/c my son does this approach.  It has been very informative for me, but I can see it being not so helpful for another person.  I am mentioning it anyway. http://www.amazon.com/Verbal-Behavior-Approach-Children-Disorders/dp/1843108526/ref=sr_1_1?s=books&ie=UTF8&qid=1448388310&sr=1-1&keywords=verbal+behavior+approach

 

My son was diagnosed 3 years ago!  The diagnosis period is very hard -- the logistics and trying to figure out how everything works is very difficult, and then also just -- trying to figure out what it would mean for my son.

 

Thinking of you. 

 

 

[Kat w]

I agree with the ' take a few steps back and breath' advise. This is tough. But you are a very intune mama and doing good. You are ahead of the game :) kuddos to you for starting this ball rolling now.

 

The biggest and best peice of advice I got from a friend here where I live, she has 5 kids like me , her youngest is 5 yrs older than my boys....she told me....

 

He's not my only child.

 

I've thought back to that so many times in my mind over the years and it's so true. Alot of times the social situations our lil guys are in with their siblings is really good ' therapy' for them.

 

You will have challenges and triumphs. This is a scary time. But you are doing great. Seeking advice , getting your lil one in early.

Just hold him and hug him and enjoy your holidays. :) and come to the board for encouragement :)

 

Know, whatever they do find, there is help on the other side. They will refer you to good therapist or programs that will greatly benefit your lil one . ( that's the triumph on the other side lol)

 

And humor, keep your sense of humor. It will work well for some 'mom therapy ' :)

 

We are in the process of basically starting over . The facility a friend of mine and me used closed their doors unexpectedly in Feb. She and I have taken a break to regroup and come up with a new game plan.

We are going to the university after the new year and do any new testing they will give us. Then, well get referred to new therapist . Its a process, you'll get through it.

 

Looking for a support group in your area helps too. Let's you see the successes of older children and find out what other moms have done and where they go.

 

Big virtual hugs and prayers. You can do this :)

Have a happy Thanksgiving!!! :)

Edited November 24, 2015 by Kat w