Just Received Autism diagnosis...now What?

A writer on the subject whose work I've enjoyed very much is Ellen Notbohm, not a professional, just a mom who has been there.

:)

You are the second person who has reported a diagnosis of Autism in a child around two and a half. I find that troubling because my son sees one of the leading psychiatrists in the country and he has told me he will not diagnose a child under the age of five because the child will change so rapidly in those years.

We knew something was up by the time Andy was three and he got therapy based on what symptoms he was presenting but no label.

Anyway just keep digging for resources. I still stumble on them from time to time. The problem with Autism spectrum, which is what I am assuming your daughter is, each kid is different. You have to learn what you are seeing and not rely on books and resource teachers to tell you. In other words you need to be your child's advocate.

Anyway, encouragement, Andy is now 12. Socially still isn't with it but well on his way to being an independent adult. :)

I'm a mom of a child (8 now) on the spectrum and I remember the day a woman from my school district used the "A" word and I wanted to pummel her. I cried and cried to the point I couldn't even sleep. I got online and at 6:12am my hubby came downstairs to find me in a sloppy, sobbing mess as I had googled so many horrible stories vs. the good ones that I felt my sons life was over.

Now, fast forward several years and over the "7 signs of grieving" period, I can look back and see things so much more clearly and actually smile. You need to remember that before the age of 5, childrens brains are growing so rapidly, that it's the best time to start all therapies. Our brains are a fascinating organ as they can be re-trained and can grow new neuro-pathways! Just know, that for every milestone she conquers, she won't forget because her brain finally re-connected the pathways. There is so much hope out there for your daughter. The more you do now, in the early part of life, the better!! Once she hits puberty, her brain isn't as easily trained.

Life only get better from here. My son has gone from a child that would bang his head on the floor and have such horrible temper tantrums in the car because I took the wrong freeway exit to an amazing second grader who is pulled out less than 20% of his day. His cognitive skills are there, he can definitely learn, it just may not be in a normal school fashion, and that's ok!! He loves to laugh, he loves to swim, he loves Halloween and dressing up, he loves going to the movies and playing video games. He is potty trained, he can shower all on his own, he can clean up his own room.....my list goes on.

You can either choose to sink or swim right now and I have a feeling you are going to choose to swim. You aren't alone, there are so many of us moms (and dad) out here willing to lend a shoulder for you to lean on, so use us. If you want rescources, here are the usual starter websites that may help:

www.autismspeaks.org
http://www.tacanow.org/
http://www.generationrescue.org/

You are going to be just fine. If you are married, make sure your partner and you team up to help this little girl. My husband recognizes when I've had a really crazy day and to sit down to do homework with my son, isn't always going to bring out the best in me, so he'll step in to allow me a good, deep breathe so I myself can re-group and come back to some of my sons more challenging responsibilities such as the homework.

We go to the most wonderful group of OT's. This group has changed the life of my son and my family. The best advise I can give you is to find a good group of OT's and stick with them.

My son is starting 4's preschool this year. ( next week)

I love reading the posts below about the children who were diagnosed early but are now thriving older kids! Gives hope. Thanks for sharing, all of you!

And know my heart goes out to you....the diagnosis day is hard. Even though I knew in my Mama heart that something was going on...when you finally know for sure it is such a mix of emotions.

I have a good friend that has gone through this.
Just remember that she is the same girl she was yesterday, with O. big difference: OPPORTUNITY!
Ask questions and take advantage of any & all services available to her.
My friend's little boy was PDD-NOS diagnosed when he was about 2 and guess what? He's now in 3rd grade and NO O. in the school is aware of his Dx nor does he need any additional or special help. He was mildly autistic (PDD-NOS) but she had all services, therapies, etc and he is 100% mainstream now. Cure? no. Help? YES!
Good luck and God bless!

i have been there before! my oldest(now 8) was diagnosed PDD-NOS at 13 months, but our physician wouldn't give the official "autism" stand until age 3. my son is at the very high functioning end of the spectrum, and i think a lot of it is because he received services as a very young child. it IS a relief to have a diagnosis, i know up until my son's diagnosis, i would occassionally wonder if he was "normal" and i was crazy, was it all in MY head? i think your feelings are very normal, i'd type more, but it's almost pickup time for my youngest at preschool! send me a private message if you have any specific questions - best of luck :)

My son has also been diagnosed with autism end of June.. he is also 2.5. It is less common in girls than boys, I have been told. I am in the process of applying for the Autism waiver. You might be able to claim Social Security/Disability for your daughter to help with unforeseen/medical expenses.

First step is to get Infant Toddler Services/Early Childhood Intervention involved. They are free and they can give you advice.

Find a support group or a mommy and me group with the same issues. Just google Autism Support in your area I am sure there will be a few. Also, Autism Speaks is a great recourse.

Big hugs and stay strong. It will get better. At least now you know why her childhood was so different and more difficult than what you had imagined.

Feel free to PM me. I am in the same boat as you.

Is Babies Can't Wait your local early childhood intervention program? If not, contact your ECI. They provide free services and will also be able to direct you to other resources.
Good luck and God bless.

Wow. I am so feeling for you. My six-year-old daughter was diagnosed almost four years ago, but if I live to be 100 I'll never forget that awful day when I received her diagnosis. Yes, she had early intervention; yes, she was the same girl as she was the previous day...but the instant in which I got the diagnosis rocked me to the core.

That said, the solace for me has been in the solution. Some people get it from religion, some from telling their story to the public...for me, it's all about finding ways to interact with her that are both accommodating and that help her reach her potential in the world at large. Techniques we've learned in therapy have been invaluable. Sometimes the therapist or her teacher will ask me if they should stop because I am too overwhelmed, and I always tell them, bring it on! The more tools I have in my kit, the better.

Some suggestions that have worked for me:
1. Take feedback from parents of typically developing children with a grain of salt. I do not care if your nephew has an ASD, I do not care if your co-worker's grandchild's neighbor has an ASD, I do not care if you saw the Oprah where Jenny McCarthy was on. Hopefully you won't encounter the stunning ignorance that I have but since chances are you will, be prepared to tell these people if they haven't walked in your shoes then go take a hike. 2. What feedback DOES work for me is from other parents whose children have an ASD. You'll find them in the waiting room at your kid's therapists, in support groups, and in her classroom. You might also have some luck on meetup.com.Other parents in our situation are invaluable resources for activities, humor, and referrals. It also gives me the chance to be of service to others, which helps me to stay out of self-pity.
3. If you come across a "cure" or a treatment that seems too good to be true, it probably is. The therapy route is excriciatingly slow; however, it's the most effective. Trust me on this one.
4. If Easter Seals have a branch in your state, check them out. We also have http://www.theautismprogram.org/ in IL - maybe there is something similar in GA. Any advocacy workshops, especially those covering how to get your child a public school education, are definitely worth attending.

sorry this is so blabby but as you can tell I feel strongly about the subject! Best of luck to you and many blessings.