Thank you Ali for your encouragement. I'm not surprised that your friend is finding this out, too. This thing runs rampant in some gene pools I think. I am learning so much about my own family. Now I know what's wrong with everybody!
I have a 4yo son with ASD/Hyperlexia. I have known for a year but I can't seem to come to grips with this. It is not so much the fact that he has difficulties, more that I am terrified that I won't be able to help him. I have mild aspergers and bipolar disorder - diagnosed weeks after my son's diagnosis. I have always wondered what was wrong inside my own head, now I know. I have a tendency to be disorganized, flighty and tend to stay in my own world - not at all the stable social personality that he needs. He needs structure, routine and constant interaction. I have learned so much about this and can rattle off facts and strategies but to implement them is nearly impossible. My brain is simply hardwired differently.
Although I'm in therapy and my therapist is sympathetic to this, I'm not sure anyone can really change the situation. It just seems so impossible.
So sorry this is so sad, but I'm really at the end of my rope.
Carla
Can you get pca services or respite care thru your county? Can your family help you at all? Also what about your child's dad or his family? Or is there no contact?
Tammy
Hi Carla,
Welcome to the board! I actually have a friend who is almost in the similiar situation to you...she has not been dx'd yet but her son who is 3 was dx w/ asd and she is sure that she has aspergers, so is her neuro...and it was like a light went on when she realized that was the reason for the way she felt...it gave her some peace almost...but its hard enough to raise our children let alone be going through it yourself...offering a cyber hug if you want it! (((hug))))...but hang in there...I bet the therapy will help you cope and its difficult for all of us to actually accept our children are dealing w/ asd...there are days when I want to just run and scream and throw myself down and just cry...I get frustrated, uncertain, totally unorganized at times...its very overwhelming...but just take it really slow, try to accomplish one thing at a time...you'll do it...as hard as it is...you'll do it for your little guy....
My son is 4 1/2 and dx w/ pdd/nos at 29 mths...its quite an "adventure" this ASD but I personally have found great support, strength, encouragement and advice here in this forum...I hope you will too....please come to talk, to vent, to laugh and to cry...we are here for you!
Best of luck!!!
Ali
M
hi carla welcome to the board xxxx
i dont know if i can help but please pop up ur worries and maybe we can give some advice ,take care xxxx
Forgive my ignorance - pca or respite through the county? I did receive respite services while Luke was getting services through the infant program. Is there something else I don't know about?
As for family, that is much of the problem. Except for my wonderful mother who does all she can at her age (I am an older mother) we have no family nearby. Because of my son's difficulties we don't get out much so we are pretty isolated. Not helping the situation, huh? We have just begun attending meetings at our local ASA. I would like to attend church but I don't know what to do with him. The autism is mild enough to make people expect him to act "normal" but he can't sit still and what do you do with a child who is too old for the nursery but can't attend children's church let alone sit through the adult service? Oh so frustrating!
Pca is personal care attendant as it is called in Minnesota. Some states call it a home health aid. If your child doesn't have one, see if you can get your child a social worker thru your county. Your hours or units as they refer to them is based on the child's needs. Also your county social worker could get you overnight respite care too. There are also numerous waiver type services. Depending on the state you are in of course, depends on what they offer.
Tammy