Monthly Archives: November 2014

What I Am Thankful For

By Lori DeCrescenzo

My son recently turned 16.  He is now taller than me, needs to shave and is beginning to showcase his true personality.  I have to admit, I really love who he has become!  Was I ready for all this?  In a way, yes and in some ways, not really.  I find myself in some type of transition.  It seems that my role as mother/caretaker has changed.   While I am really happy and impressed by his maturity, I feel kind of caught between two worlds.

One world is a place where it is exciting to see these changes in him.  He needs me less, loves his time with Dad, and is more independent in self-care than he has ever been.  He is less stressed in situations that previously caused him a lot of dismay and all these changes are giving our family a little more flexibility in our somewhat rigid life.

The other world is the reality of now preparing for him to become an adult.  Guardianship, disability insurance, reapplying to DDS . . .Oh my!!!  Not to mention considering the option of Adult Family Care and what life will look like for him when school is over.  But I am getting ahead of myself, as usual.

For now I am forcing myself to be in the moment.  To truly appreciate and celebrate just how far he has come in his all development -mental, physical and social.  Part of me just wants to stop time and enjoy this moment forever.   I am finally here, he has grown up and all my concerns that I have had since his diagnosis at age 2 have just morphed into a way of life that is uniquely ours.

Now I don’t want to paint a picture of our lives being on Easy Street.. .they are not.  I think it’s more about acceptance, adjusting and believing that we will get through whatever life throws our way.

Maybe it’s this time of year, Thanksgiving, being grateful, etc.  I’m not sure.  But what I do know is that sometimes you just need to stop the anxiety train of worrying about the future and just rest, even if just for a moment.  I have a little over a year before I really need to get into the nitty gritty of adulthood.  I know that this will be another time of transition, change and worry.  I am not really sure what it will bring.  The world of autism is constantly changing.

The one thing I am sure of is that this will be upon us very quickly.  Right now I am embracing the really wonderful opportunities that high school has brought for him. . .Best Buddies, Unified Basketball, and the opportunity to attend prom!  Since I am unsure of what opportunities will be waiting him when school is over, I am enjoying each one of these now.

So this Thanksgiving I am choosing to be thankful to be in this very moment.  Next year, I make no promises.

I hope you and your family enjoy the holidays!

Preparation is the Key

Preparation is the Key
Patricia Leonard-Toomey
Midterm elections are over. We are all hopeful that the robocalls have ended. The holidays are headed towards us at the speed of light. Before that happens, it may be a good time to reassess how your child is doing in school and if there should be any changes to the IEP.
Have you received a Progress Report or Report Card yet? Is progress actually being made? If not, should you be sitting down with your child’s TEAM to determine what needs to be put into place for your child to successfully complete all of the goals and objectives on the current IEP by the time the next IEP is scheduled? Have you received all of the assessments you have been promised? Do you need any evaluations to be scheduled right after the New Year to make sure a transition for next fall will go as smoothly as possible?
Will you be requesting a summer program and need documentation stating clearly and unequivocally that your child will regress academically or socially if he or she does not receive extended year services? Now is the time to get all of that in place. If you wait until late Spring it could actually be too late to complete all of the tasks you may need to get done. Evaluations can take some time. If you do not agree with the school system’s evaluations and need to request Independent Evaluations, it can take even more time. School systems typically get bogged down in April, May, and June with evaluations and end of the year IEP’s. You want to make your life as easy as possible, so starting early is the key.
If your child is graduating from school or Turning 22 and leaving for an Adult Service Program of some kind, have you completed all of your Transition Plans? Have you visited Programs, do you know who the receiving agency will be? Do you know what type of supports your child will have in place as they leave the “safety” of the school system [due process is available with an IEP] to the more nebulous world of Adult Services? Have you considered Guardianship or Power of Attorney?
Will your son or daughter go to college? Have you completed your visits? Will they need any special accommodations? Have you been in touch with the Disability Office of the college? Will they live away from home? Do you need to have any type of Power of Attorney to be certain the college will be able to contact you re: your adult child if an issue occurs?
We all know that you can never be prepared for everything, but it is important to be as prepared as possible. It will cut down on the stress many of us go through at this time of year, and then as spring approaches knowing we have so much to accomplish before the end of the school year.
Hope you have a Happy Thanksgiving. We are using the Tall Pilgrims now! [please check out my previous blog from January]