OT: Autism and VH1 Classic and personal story

[tammy]

http://www.vh1.com/partners/vh1classic_rock_autism/

Was watching VH1 Classics this morning (rarely watch this channel & yet Journey always seems to be playing when I do) and they had this commercial come on during the 20 Greatest Love Songs..."Open Arms" Live came in at #11, btw and the host, Lynn said it was one of her favorites.

Anyway, this month is Autism Awareness month. I wish I had been aware of Autism before we adopted a 1 yr. old child from an orphanage...my gut told me something was just "off a bit" but I had no information on this disorder & I thought it might be my own anxiety. The Pediatricians that we consulted & viewed her video didn't even mention anything about Autism & that it is now diagnosed 1 in every 150 births! That is beyond me. We adopted her and I knew there was something not right but everyone kept telling me she was fine. The signs were there...she hated being cuddled & would throw herself out of our arms, she screamed A LOT & only stopped if we put a video on for her - she didn't want us or human comfort. She didn't play with me or look at things I pointed at - she preferred to crawl to the frig & pull on the cords & chew on EVERYTHING, even dirt & sand. My instincts told me to get her assessed (her Pediatrician was not concerned) and she was very delayed. I got her services/therapies & after a year it was suggested by our therapist to have her see a DEVELOPMENTAL Pediatrician. This Dr. knew within minutes what she was seeing & blurted out, "can't you see she is Autistic?" I felt like I had been stabbed. So, to close this out - our oldest is going to be 6 years old next month - she cannot speak or sign but is making some word-like sounds once in a while, she still has to wear diapers because she just doesn't get it even after 2 yrs of training with therapists, she is also a loud screecher/screamer all the time, even during therapy & everyone's ears are exploding...this has been going on for close to a year now. Thank god, she is for the most part a happy girl within herself & makes excellent eye contact now (she used to stare through us). She can't point still (a big, big indicator of Autism) or look at what we point to, such as the moon. She is still much like an infant, a very energetic 6 yr. old infant.
Anyway, I think it is great that there is a growing awareness now & spreading the news is what is going to change things. Early intervention can help kids - some, depending on the degree to which they have Autism will, others will always have to be dependent on helpers. This disorder affects the whole family...I'm not one to say, "oh, it has been a blessing - it has made us better people...it has been hell - I've been at the end of my rope many times & probably will be a lot more" It would be my wish to see the cure and/or prevention of this disorder - it is at a scary epidemic rate now.

tammy

[SteveForever]

Tammy,
thank you for sharing, there is a reason that you were compelled to do so, someone here or at sometime is going to read this that needed your words.
This month's Redbook magazine (Meg Ryan is on the cover) has a long article about autism with people sharing their personal stories. The other night I read this. I haven't stopped thinking about people like you ever since. My heart goes out to you!!!

I believe you are a fine person for dealing with this head on. I had known someone (an acquaintance, not a friend) years ago that adopted a child from Russia and had similar problems. They put the child straight into an institution here in the U.S. because Russia would not take the boy back. I will be praying for your strength and guidance. God Bless You. Stay strong and thank you for being a special person on this Earth, you will be rewarded in Heaven!!!

[*Laura]

Tammy...You are such a brave woman.Thank you for opening up so much...
It really is a heartbreaking thing to see your child affected by Autism.
What a shame that she wasn't diagnosed immediately...It could have been a bit different.

Fortunately,my daughter is perfectly healthy,so I can't even imagine what a parent must go through with an affected child.
However,I do have a friend here who has a little boy who suffers from Autism,but he was diagnosed early.
Progress is slow,but it's happening.You have to have tremendous patience and give a lot of love...You need to dedicate all the time you have available to an Autistic kid...They need attention and LOVE,LOVE,LOVE,no matter how "lost" they might look.But I'm sure you know this already.

Somewhere deep down inside these kids are reacting,but the brain does not translate that.So they might seem not interested in human comfort on the outside,but on the inside they need love and affection.

Just be patient...Hang in there.Have faith.

Wishing all the best to you,your family and your daughter.

[Perry86fan]

Tammy,
thank you for sharing, there is a reason that you were compelled to do so, someone here or at sometime is going to read this that needed your words.
This month's Redbook magazine (Meg Ryan is on the cover) has a long article about autism with people sharing their personal stories. The other night I read this. I haven't stopped thinking about people like you ever since. My heart goes out to you!!!

I believe you are a fine person for dealing with this head on. I had known someone (an acquaintance, not a friend) years ago that adopted a child from Russia and had similar problems. They put the child straight into an institution here in the U.S. because Russia would not take the boy back. I will be praying for your strength and guidance. God Bless You. Stay strong and thank you for being a special person on this Earth, you will be rewarded in Heaven!!!

AMEN!!!


Tammy, i just saw something and went back to check it out for you.Jenny McCarthy has a 4year old some with the samething.She has a new book coming out soon it is called "Lounder Than Words"
Also she has a website called Indigomoms.com where is talking about it.I had a friend that her daughter had it i have lost touch with her over the years.You are a very special lady with lots of love in your hart .There is Angels watching over you.Your a strong wonderful lady.

[Just Mindy]

Tammy, I also have a daughter w/autism. It is not an easy road, I know...same things here, pediatricians kept telling us she was fine. My daughter does speak and is considered "high functioning", but I know all too well the pain in your heart.

If you ever need to talk, please PM me.

[Perry86fan]

What beautiful caring strong women we have here. Tammy & MSR you are in my prayers your both very special women.And to all the other wonderful women here.

[Deb]

Bless you Tammy, you're a strong woman! Is she the daughter we met back in January at the star, before heading to Lofflers? She is an absolute sweety!

[ohsherrie]

I've raised two children and am now helping raise two grandchildren. I can't imagine coping with this kind of stress. I hope I would have found a way because most people find some way to do what they have to do, but it takes a special woman to handle what Tammy has.

You're a great person and a great mother Tammy. I wish I could offer you more support than that.

[tammy]

Bless you Tammy, you're a strong woman! Is she the daughter we met back in January at the star, before heading to Lofflers? She is an absolute sweety!

No, Deb that was our biological daughter that day...she came as a surprise after we adopted Katia...yep, one of those stories.
Thanks all for your kind words...it hasn't been easy, it takes it's toll on us, but slowly she is making some progress...it's been a rough road but it was a lot worse when she was younger...and believe me, even with all the shrieking & loudness & defiance & making us yell & pull our hair out, she has a huge smile on her face the majority of the time. It is just a day to day thing & where she will progress to is anyone's guess...I try not to think about the future too much. It would be great if she could dress herself & brush her teeth - she also has motor planning problems, so she still has trouble using a spoon & fork. But, she can recognize her name now & put the letters in order. The major problem is she doesn't intiate anything. She may learn some things, but she will not or cannot connect them to do them on her own without the therapist or us telling her to do so....so she may know how to put the letter blocks in order for her name but you'll never see her playing with them on her own.
Just wanted to bring this up for Autism Awareness month. Last week, I just happened to turn on the t.v. and Oprah (I haven't seen her show in years) came on with the entire show devoted to Autism. Apparently this was her very first Autism show! I had no idea - I thought she had done them before. Toni Braxton has an autistic son that was recently diagnosed, too...she is now proactive in Autism Awareness.
Anyway, hubby & Katia will be doing for the first time the CAN (Cure Autism Now) walk this month in Pasadena, CA...she will be the dynamo running headlong & he'll be the one puffing behind her. lol.