new here and stressed out | Autism PDD

My story -

We started suspecting something was wrong with my now 2 year old nearly a year ago when she still wasn't walking or talking.  Had her evaluated by EI and she was labeled as developmentally delayed.  Started ST when she was 20 months and she finally started walking around that time too.

We've taken her to see neurologists who have mentioned mild autism and told us to contact an organization down here to get ABA therapy.  We did and they've consulted with us a couple times and we've tried implementing it here and there but haven't been very consistent.  We took her to see the neurologist in May after she turned 2 and were still told possible mild autism and keep doing what we're doing.

Last month we were visiting family and one family member set us up with the head of the autism department at a local university.  It was his opinion that she wasn't mildly autistic, she is severe and we needed to get her professional help and fast.  He said she needs 40 hours a week of ABA therapy by trained therapists.

So now we're scrambling to get our ABA consultant back out (we live too far for actual therapists to come to our house) and she is busy and/or dragging her feet.  So now I feel like we're just wasting time waiting around but we need to do something now.  Unfortunately we live far away from family so it's just us which makes it hard.

Thanks to this message board I'm in the process of putting up flyers at a university an hour away in hopes of getting a couple of students to help out.  As much as I'd love her to have trained therapists every day we just can't do it financially.

Right now my daughter attends preschool 3 mornings a week at a typical school.  We are hoping to find a shadow to go with her though so she can participate better since there's only so much her teachers can do.  We put the ST on hold for now since she wasn't doing any good, and we are in the process of changing OTs.  She does receive PT since she has some gross motor problems.  But that's it!

Can anyone tell me if this knot in my stomach will ever go away?  My daughter is sweet and loveable but isn't talking, pointing or communicating at all.  We are taking her to get a diagnosis this week and I'm nervous.  I know what they'll say but it still scares me.

Anyway, sorry this is so long, just wanted to introduce myself!

Does the knot go away?  I don't know.  Mine is still there, but much less noticible these days.  I was in your situation. I live in the sticks and there are no aba therapists here.  I was very lucky in that when my ex and I split up, I went to live with my parents.  The lived 35 miles away from an aba center.  I couldn't afford the actual program, but we did get one of their speech therapists twice a week.  I learned from her.  I didn't know what we were doing was aba lol.  I thought it was actual speech therapy and that's how speech therapy was done.  I still use her techniques today.  I also got a great book call "A Work in Progress".  Great aba guide.  Describes the discreet trial great.  It's my day to day guide.  I used it for compliance.  I'm happy to say that my B can now sit and attend for a full 15 minutes at a time.  We're working on not eating crayons right now.  I'd say about 30 percent of the time now he'll actually put the crayon on paper instead of taking a huge bite out of it.  I just want to say...big hugs and welcome to the boards.

Welcome to the board..as far as the knot--I don't know if it ever really goes away, but it does get easier to deal with!  You are lucky- your dd is very young and will get good early intervention (which seems to be the key!) once things get going.

Like Mary said, try to get as much implemented at home yourself!

This is a great board and lots of educated, knowlegable people here, so if you have any questions, ask away.  Someone will always be along with great advice and tons of support!

Good luck and take care!

Hi i am shell mum of six

one with autism

one with aspergers

one with triats

one with lbd

o also have aspergers syndrome

 

welcome to the group

i never had the knot in my stomach perhaps because i am not normal

but i pity anyone who does not have a disabled child for there eyes have see nothing

i love my world and my autistic world im lucky enough to know both

i have never felt pity for my children for i beleieve i am the blessed one

shell

 

ABA is not always the best way to go it is very intensive and will depend on the nature of the child as to if it works

Welcome. I have found that the autism just became part of my life instead
of taking over my life and thoughts. I love my boy just the same and him
having autism has really changed the way I look at and appreciate many
things. And while it gets easier, different issues will come up over the
years - new behaviors, dealing with the school system, little victories...It
is very stressful in the beginning but it does get easier.
If you search for book recommendation on this site you will find a ton of
suggestions. I am just reading Greenspan's 'The child with special needs'
and I regret that this was not the first book I read. Even though it is not
about autism specifically it is much more to the point than almost any
book and it shows you ways to help your child grow at all stages.
You will find this board very helpful and supportive. Ask away!

Welcome to the family here. Like you I had knots in my stomach all the time. Nicholas was about 2 when we first got the PDD-NOS label. I read all about autism, PDD. Aspersers on the net. BOY did it make things worse. My little man was going to be in his own world, he would need help forever bla bla bla. Not all kids are the same but I thought I would share a good story so far. At first I mourned for a long time. I lost my dream, my little man. No baseball, football or wrestling.. My wife went all out hit the ground running. She got the ball rolling. Therapies Dr appointment and so forth. It wasn’t until my father said to me one day. You will always worry about you son, autism or not. I still worry about you and you brother and sister. So get past it and get him what he needs. It is a ton of work but worth it. Nicholas is gong to be 6 this week and he is doing FANTASTIC. He has a couple of friends in the neighborhood; I coached his T-ball team this year. He is starting NT kindergarten ( with an aid), and talks all the time. He still needs help with cretin things and his fine motor skills aren’t the best. I can tell the difference in him. He is fun, happy and energetic. So don’t think its all gloom and doom. It just takes lots of hard work from BOTH parents. Oh and thick skin, people can give you some looks out there. Especially when your little one has a melt down in public. I learned just to ignore them. Good luck and we are all here for you.

 

Oh and if it were not for the WONDERFUL people here on this forum, I would not have made it through. And I thank them all, with all my heart.

John

John39323.4310069444The diagnosis will help you get services. Is she in early intervention, and if so are they only doing speech? I would call early intervention again and tell them that she is suspected to have autism and is being seen this week for a possible diagnosis and you wanted to see about stepping up services. My boys did not speak or point at age 2, they stood and screamed for what they wanted. We got 2 hours of OT and 3 hours of what they called special instruction for each child. They did not get the speech therapy put into place before the boys aged out. But the special instruction did floortime, at least I think it was that, it also seemed to have some ABA qualities to it now that the boys are officially receiving ABA. She got them pointing and doing alot of other things in a pretty short period of time. Calling the University is a great idea too. I think the knot will ease up once you've had time to digest the diagnosis and  once you get some more therapies in place, even if you are doing it yourself. My boys were only in early intervention for a few months before they aged out and I kept it all up at home, so really until this summer I was their main therapist, and they still made some pretty amazing progress with momma in charge. Don't let that guy freak you out about the 40 hours of ABA a week. We do the best we can with what's available and what we can afford.  Welcome to the board!

I always could breath better and sleep better when I had my dd in therapies..she wasnt pointing or talking or much of anything at 2 but loved teletubbies and blocks!

Get the book " Behavioral Interventions for childrens with autism" it contains all majority of the programs you need to get started...start investing in baby bumble bee videos and flashcards too. Make of list of what rewards she will work for..this will come in handy:) Best of luck finding therapists!

Welcome -

The knot reappears from time to time when he's doing something new (1st day of school, etc).  But, as John said you'll always worry about your children. 

The initial stuff is just a punch in the gut.  It's hard to imagine feeling normal or happy again.  When Anthony was dx'd I couldn't sleep.  I would wake up in the middle of the night and go to the couch and cry so I wouldn't wake up DH.

Trust me, you'll feel better.  Eventually, that feeling of something crushing your chest will go away and you'll be able to breathe again.  It's slow, you don't realize it's happening, but some day you'll be sitting there typing a message to someone else who's new to this and you'll be the one with the encouraging words.

Wow, thanks for the warm welcome!!

Rhosyn - I actually have that book!  I bought it several months ago but then had my 3rd baby and, well, life got busy.  But I'll have to dig it out again, thanks!

emerald_521 - I keep hearing early intervention is key but the long wait lists are frustrating. Thank you!

spectrummum - Thanks for giving me a different perspective on things!

Linda11567 - EI services offered ST, OT, PT and Special Instruction.  The ST is on hold for now because all she was doing was trying to get my daughter to sign more while feeding her a snack - something we do every day and at for 30 minutes we felt our money could have been spent better elsewhere.  The OT was no good either so we are going to get private OT which actually turns out to be cheaper than the one EI offered to us.  She is now getting PT and I like our therapist there.  I really liked the special instructor too but apparently she needed a certificate that she didn't have so she only came out twice and was done.  They haven't replaced her.  The downside of living in a very small town!

micki - I do have Greenspan's book as well.  I just need to find time to read all these books! 

John - Thank you for the positive story!!

ShelleyR - I do feel better when I feel like we're getting the ball rolling on things but then we have to wait and it drives me nuts!  I just ordered that book this morning, I can't wait to get it!

mamajot - it's nice to know I'm not alone in how I feel - you described me exactly!

[QUOTE=ShelleyR]

I always could breath better and sleep better when I had my dd in therapies..

[/QUOTE]

I feel the same way.  That is why I am so freaked out about my middle child.  The older one and younger one are getting services for their needs, but my middle guy doesn't have anything right now.  I know at MINIMUM he is going to need speech for articulation and OT for sensory seeking.  That is even before thinking about what he will need if he is on the spectrum.

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