Ds- Birth to Adults - Wisdom

[faithhope]

Hi!!!! After reading Debi's post and others here. It got me thinking, well I am constanly wondering about Noah's future. I know ever kid is unique individual, however there are alot of things that we as parents of special kids have to think of and prepare for. There is always a wonderful post that helps remind us or give us ideas as to what issues come up.
I was just wondering if anyone would be willing, even if it is the 100th time you have mentioned it before, if anyone would like to share some wisdom.
Maybe what to look forward to with entering the school years. Personality issues, anything that stands out to you that you would like to share that could help moms like me. I just like to hear everyones experience and I try to store it in my brain for future reference.
OK I hope I made some sense. If this wasn't clear than sorry.
Oh also today we went to our first get together with the Up with Downs of Pinellas group and had the best time, met so many great families. I am so happy, it really makes a difference to get to know other families like ours.
Oh and HAPPY MOTHERS DAY!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! I know you are all the best mom's cause God decided to trust and bless you with a special child.

[MB]

Create a vision and stick to it. By the age of 21, your child will be.......

For us:
Living away from home
Satifying employment
Active social life

This vision statement has directed just about every decision we have made in regards to our son. Every IEP is driven by it. Every placement in school is decided upon the by choosing the best environment in which to reach these goals.

Every behavior is analyzed in reference to the goals. If the behavior will inhibit him from reaching the goals, we don't stop until we find a way to eradicate it.

Behaviors and skills that need to be taught are selected based upon the vision. He is currently doing a very bad job at being responsible for his own laundry. Do I just let it go? Based upon the vision of living on his own, the answer is HECK NO!

He is also currently wearing clothes that I feel are less than flattering but do reflect his passion for breakdancing. Do I let it go? Based upon the vision statement, yes. He wears a uniform to work, he has plenty of friends who go out with him while wearing these outfits, he is appropriately modest and there are many people living on their own who do not wear polo shirts and khaki pants. LOL!

Hope this helps.

mb

[faithhope]

Thank you so much mb! That is great advice, and you made me laugh too = ).
I do picture what I want to see for his future, as long as what he is happy of course. Now I can take what you say and just let that guide us in all that we do for him.
Thanks again!

[mydsgirl]

I agree with the vision, but it my opinion it changes all the time.

I know that I do a lot of net working. I volunteer at a center for adults with developmental disabilities. I talk to the participants about what is important to them.

I have been checking to see what different types of living arrangements would be an option. The costs of these options and who pays for what.

I also set up a Special Needs Trust and did some other legal paperwork.

In the mean time, I am just having a fantastic time raising this little girl and learning from her each and every day.

Leah

[CC]

My thoughts are don't get to far ahead of things Noah is just a tiny guy and things you will have to deal with one day will change lots is my bet. I am a big believer in checking things out way before its time but by that I mean just a year or so, KWIM? By the time Noah is 18 or 21 and ready to go off on another stage my bet is there will be so many different options that are just not available now.

Enjoy your little boy and try and not worry so much about the future. I know easier said then done, right

We too set up a special needs trust when Chris was just a baby, personally I think that is a Biggy, but then again I was a legal secretary for years

HUGS

CC ~