Re: Ginny / Barbara

[Guest guest]

Barbara and , thanks..

i love that saying. I also love the story about planning a trip to Italy..and always wanting to go to Italy..always wanting to see Rome and the sculptures. Wanting to see Vatican City and all the wonders of Naples. Wanting to see the countryside in Florence and the ruins of Pompei and you learn Italian and you study up on everything to do with Italy...but once you get on the plane you find out you are really going to Holland. Holland? you yell...no way I wanted to go to Italy. Once you get to Holland nothing seems familiar...you don't know the language..you don't want to be there..you want to be in italy. Everyone else you know went to Italy..but you are stuck in Holland. Over the next few months you try to learn everything about Holland since you are stuck there...you try to learn the language...how the customs of this country are different from what you learned about Italy. Everytime you talk to friends and family they are

all having a blast in Italy...but you are just trying to get by in Holland and feel twangs of jealousy about being left out. But as the seasons go by you see that Holland is also beautiful..you look at the windmills and countryside and see the beauty you have missed and start enjoying Holland tremendously. You realize that Holland is just as beautiful as Italy is...it's just different...but still just as much fun for the most part. So even though most you know went to Italy...you realize that they are missing the wonders only found in Holland.

Barbara...I agree totally that sometimes parents need to put their personal issues aside and try to advocate for everything their child needs and deserves..and they need to have the abilitiy and knowledge to know the difference between what's being overprotective and hindering to a child's ability to grow up independently and what the child really needs help with and sometimes that's a fine line between the 2. I wish there were more groups for parent's with children newly dx with things like autism, adhd, bi-polar and so many other disorders. It horrible for a new parent to get the news that your child is autistic and that's that...no other information..no information on the disorder...no support groups in most areas...and no information on what to do for your child...you are basically on your own to find out everything about autism and to find out what is the best way to deal with this disorder. I hope someday autism will finally be

aknowledged in state funded programs...right now autism isn't...DMR (dept of mental retardation) states autism is not under their program because most autistic children can learn congative skills above or on age level...and if below age level they can not be tested properly under current testing because mostautistic children under congnative age level don't speak and DMH (dept of mental health) states autism is not under their program because autism is not a mental disorder it is a neurological disorder...so that doesn't leave any options for respite or other services that are needed for the parents to help their children. Most insurances don't cover any therapies for autism. So until the child becomes school age which is 3 yrs old when having autism...it's up to the parents to do all the work alone..unless you are low income then you can get Early intervention to step in which will give you OT, PT, ABA and speech therapy in the home. They will also make the

transistion to the public school system easier and will recommend a good IEP to be put in place. SSI can be a great help also if you are low income..but if you are just above that income limit you have no help at all...so sometimes it's not the parents not caring...it's the system that won't help newly dx children and their families find out what is needed to help them and their child thrive in the world. Sorry this was a novel..but I just got going and going..lol. Hope you had a great weekend...and thanks for the wonderful compliment.

...you are a strong person...and from reading your posts I get the feeling you are a very wonderful, caring compassionate mother and your daughter is lucky to have you for a mother. You have very good insight it seems when it comes to what your daughter needs...maybe you having RSD will help you know what your daughter is going through now and you can help her more then if you didn't have the RSD yourself. Things always happen for a reason..you may never know what that reason is...but usually it's because you can become a better person despite all you have been through and have to endure...so keep on hoping and have faith...Hugs..Ginny

Barbara

Well said.

Ginny---As I'm sure you know, it takes strength to deal with the daily routines of a disabled child, but I think it takes more strength to deal with society and their acceptance.

A saying we have in our IV support group, which I dealy love and take to heart, is " We thought we would teach our children about the world but ended up teaching the world about our children."

In a message dated 11/21/2004 9:47:49 AM Eastern Standard Time, RSD-CRPSofAmerica writes:

Subject: Re: Ginny/autismGinny - When I meet with a child and their parent/s for the first time, I frequently find myself thinking "Thank God" or "Oh cr@p," not because of how seriously troubled a little one may be, but rather because of the obstacles that must first be cleared out of the way. How sad it is when a parent's own personal issues, even with (and sometimes because of) the great love that they may hold, interfere with a child getting everything that they need. It's an incredible joy for me when I meet a parent who is a strong and loving advocate for their child. Your son has been blessed to have you. Barbara ( who shares your frustration with how mothers of kids who had autism were viewed not so very long

ago)