What advice did you need the most? | Autism PDD

Hello

I was thinking of all the things I have learned the hard way when we first heard Sarah had autism and wished so much that the experts in the field would of told me some things so I wouldnt had to of learned them on my own...I made a list I wished I had known at the beginning such as;

*What exactly is pdd/autism spectrum & that all kids on spectrum are so different from each other (I was told my dd would never talk or have emotional connections~WRONG!)
*That my child wasnt going to morph into a child I didnt recognize and go into a world of her own and be lost forever (I was constantly looking at all her behaviors & sensory issues to sprout & worried to death that she was going to go into the corner and rock in her own world forever...or SIB's..they never happened for her...thank God)
*That our kids learn~just in a different way(for her visual was the key to her learning)
*That ours kids improve tremendously with time and interventions (I no longer see the autistic child I had at 3 years old..she is quirky but not any more than most kids)
*That a day would come where I wouldnt be consumed 24/7 with worry (I can actually skip days and not read anything about autism...huge improvement:)
*Have emotions & connections ( She loves deeply and connects..just have to look for it when she does)
*That your child's destiny is in your hands...not doctors, schools, teachers...you are the force in your child's success! (When I moved into action so did she:)
*Try to have days of being with your child and just be in the moment with them and not be looking for the "autism"...just a child you love dearly.(This was so hard for me...I was always anaylizing everything and wasted precious quality time being way too worried instead of enjoying them for them)
*Dont waste time explaining autism all the time to people..short and brief is more effective than long and windy (guilty of the latter!
Educate yourself and never assume the so called experts know more than you:)
Autism is not a death sentence...they do live long productive lives and with our help it will be a high quality life:)

ShelleyR39373.6363657407

I have to add something That it is not a one size fits all when it comes to treatment.

Be very sure that the professianls working with your child knows much
more than you the parent.

Enjoy the little everyday things that happen. Every little first is well worth
celebrating.

Just like Shelley stated

*That your child's destiny is in your hands...not doctors, schools,
teachers...you are the force in your child's success! (When I moved into
action so did she:)

Thank You Condernedpa!!! You are so right in what you said.

My son was diagnosed with pdd through the early intervention program. Althouhh i'm so greatful that there was a dev ped there to evaluate him and dx him , She gave me zero information about services, treatments outcomes, Nothing!!

And still till this day, the early intervention and intermediate unit ( which is where my son attends classes, OT and speech) I still get pretty much nothing. oNce in a blue moon they might send home a brochure for something that is available in the community.

Sometimes i still feel like i'm going in circles!! And i can see a widespread divide in the future with all these children on the spectrum, its going to be like any other disease or disorder, Those with lower incomes are not going to recieve the quality service that higher income families recieve.

I just needed to know what to do,period. I wish there was a roadmap of
some sort for parents after a dx. I had to google and read myself into an
autism coma before I figured out how to get services, and which services to
get.

There should be autism consultants or something where the Dr's can send
us after a diagnosis.

Wow .. interesting subject. I'm not sure how I want to respond, but I do want to say that although for me autism isn't a death sentence, it is a life sentence, at least for those of us with moderate-severe ASD children.

I've had to come to terms with the facts of my life ... and they are, I cannot die (yeah, I know) ... but while I am living, kicking and breathing, I will be forever the #1 caregiver for my son. Having a life that doesn't include caring for an adult child will not be a part of my future. I have accepted that, and I am now very okay with that.

Shelley, I am so pleased and happy that your daughter has come so far, but for many of us, it cannot and will not happen.

I wish every professional who could diagnose autism has a case manager assigned to every diagnosed child to help line up intervention immediately. We need to stop letting parents waste precious time going around in circles not knowing what to do or what services are available.

Concernedpa.

I have to agree with Carol. I had to learn that no amount of excellent, perfect, A+ parenting (much less the more normal level of parentlng I was able to give my son) was going to make my son into someone he wasn't and isn't. There is no way to educate the autism out of him. However, that does not mean that my efforts, the efforts of his father, the whole family, the schools and the community (not to mention his own efforts) would not be vitally important to making him into the best HIM he can be.

I wish I could have had a tougher skin earlier and truly not care what my peers thought of my son. My husband was able to do that, but I always felt pressure to "control" my son. It was torture much of the time. But it's not now. Now I just don't even notice the stares of others.

I learned that my efforts to take my son into the community, to get him as many of the same experiences as other kids get as I could, by INSISTING on socially integrating him have really paid off. He's not "normal" (whatever that is), but he certainly loves being with people and experiencing the world. I give myself, my husband and my son credit for the courage it took us all to venture out of our comfortable world, into the real one, for giving my son the gift of enjoying people and life in the outside world.

That I should not spend so much tikme wondering about his label but instead focus instead on all the things he needed to get on a developmental path

To not be scared of the A word

To not compare with other NT kids too much ( soome days its too hard - see my "Envy " post today ) and instead celebrate the wonderful qualities in my son