What Autism Awareness means to ME

[autismom]

Autism awareness...... the ribbon, the puzzle piece, early diagnosis, insurance coverage, therepies, programs, etc.....

I see too little existing programs addressing early intervention. They are just now, making an attempt at establishing newly diagnosed children, with satisfactory services and that is fantastic.

I still don't feel "addressed" in the little our country is doing for autism. They are concentrating on symptom detection, early diagnosis, and then as I see it, it just stops. They still have no clue. Leaving the people already living with the diagnosis, to do what exactly??

Better diagnosis is going to lead to the realization of truly how many people are living with ASD, but what are they doing to prepare, to set up services for their future. My daughter is 12. What about her FUTURE!! That's great that everyone is better aware of what autism is, but they are seeing the preschool aged children and their behavior on documentaries, tv, etc, but what awareness is being brought to the 12 year old who is still having meltdowns like the 4yr old autistic child they saw on TV? Do they know that regardless of my daughters acadmical abilities, she is still wiping tables at school to prepare her for life skills? THOSE are her life skills!! Lets let that sink in for a minute. I know my rights, and how to get what she needs, but as a whole, this is what ppl think, this is what they see when they see my child. I need awareness to change that!

Where is the value for these children when they become adults? Just as all the developments concerning autism are sooo over due, so are the adult services for these kids only I don't see any current developments happening, only early diagnosis and intervention. The middle schools have no clue, but only to treat them as other "multiple disabitliy" children, lump them in . There is no in between. My daughter is either high functioning autistic, in which case, she has the academic doors opened to her still (with my advocacy), or she is lumped in with the lower functioning, who are taught to simplify what they absolutely need to know like reading, with sight words, no more attempts at teaching her to read, no attempt at teaching money concepts, just give money and wait for change, it's now about social interaction, not about using her brain.

And you know, it's not that I don't appreciate the way that Autism Awareness has come, I mean, have you seen CNN??? It's fantastic! But I don't see hope for my daughter in all that. I do have hope for her, but it's not brought to me by what I see on tv. Still, just like when she was diagnosed. We are still some how being overlooked. I know that we are all different and that no child w autism is the same. But show me an AUTISTIC 35 or 40 yr old who has great services and is doing well. Not saying they don't exist, but WHERE ARE THEY???? You may see one or too in their 20s on tv, but that's it.

Furthermore, why do we keep seeing all these families with money on TV, who can afford to pay for therapies out of pocket. PLEASE, show the world the families, where the  parents make 30 -35K a year, in their homes and show the program that their children attend!! That is what the world needs to be aware of THAT side of autism. Because I believe that the day that they have satisfactory services, then we might all just be okay. The lower middle class families are the ones who need this awareness.

Just my thoughts for today ♥

[Puzzled]

Apr. 2, 2008 at 3:17 PM I totally agree with you. i'ts so  true what you said. we can never lose hope for our daughters.

[Lauriemom]

Apr. 2, 2008 at 4:20 PM

Furthermore, why do we keep seeing all these families with money on TV, who can afford to pay for therapies out of pocket. PLEASE, show the world the families, where the  parents make 30 -35K a year, in their homes and show the program that their children attend!! That is what the world needs to be aware of THAT side of autism. Because I believe that the day that they have satisfactory services, then we might all just be okay. The lower middle class families are the ones who need this awareness.

 

AMEN to that!!  I get so sick of seeing ONLY parents whose stories go like this.  I see it all the time "I spent $50, 000 on ABA therapy".  GREAT....how about people who don't even MAKE that much a year???  It is frustrating!!!

[RanchGirl]

Apr. 2, 2008 at 5:10 PM

I'm dreading my son going to middle school in the fall.   He is high functioning and is in a mainstream class, but he's the worst student in that class and the teacher PRAISES him for any little thing he does.  My problem with that is that he thinks he is like everyone else and next year in JH he will be in all remedial classes and his friends will move on.  Guess who else is in remedial classes in JH?  Kids who don't care, troubled kids and kids who are already experimenting with drugs.  Those problem kids will by far out number the kids like my son.  Now who will his friends be?  he is so easily influenced.  I fear he get in wiith the kids doing drugs.

[Mommy22boys]

Apr. 2, 2008 at 6:28 PM

Just wanna pass this along...  The Easter Seals near me here in Florida is starting up a Social Skills Group for kids 11-15.  SInce it's new, it's free!  I know it doesn't help those outside of my area, but it's a start right?  I don't know if they have any information on it on their site but here it is anyway: www.easterseals-volusiaflagler.org.  If anyone is in the area the open house for this in May 15, 2008 at 6pm.

My sons don't have autism, but one of them is special needs and I understand your frustration on how, when, where you get services.  I"m still new to all this but I'm already overwhelmed with the constant worry of what will our insurance cover and will the services from the school district be good enough.

It is parents like you who help bring about change.

[carriebo]

Apr. 3, 2008 at 8:48 AM Our family is in the bracket of ppl that make less than 25k a yr. This means that we get medicaid for our children but, because we live in a very small country town the help means very little. Recently, we have been fighting to prove our case to the administrator of our son's special needs program at school and SSI. Even with a diagnosis from his neurodevelopmental specialist that he is autistic with OCD, ADHD, Asperger's and ODD, she has been adamant on the fact that there is nothing really wrong with him. In fact, after this diagnosis, she couldn't understand the medical statement that the doctor sent, so she took it to the school counselor to interpret. When she told me this, I was appalled. School counselors are there to help our children cope with making friends and give them someone to talk to about their school or family problems, not interpret medical paperwork. and next year he will be going to kindergarten. He will be going to regular classes and will have a mentor with him at all times. I can't even imagine what it will be like come jh. I feel for ya' sister. It's pretty scary that one of the most prevalent childhood disorders is being overlooked and the only ppl that seem to be asking for a change is us moms. If you don't have a child of your own with ASD then you probably know someone who does and if enough ppl stand up, then maybe we can make a difference.

[Jerseydvl]

Apr. 3, 2008 at 9:21 AM

Hello there and awesome post girl! You should of been on CNN telling this post to them. I hear ya, I have to stay in the so called box when it comes to therapies, unless I become the next hat bandit( that bank robber) stinks too because Zach gets screwed, as well and I do, because I want him to get where he needs to be. How can you? All the money goes everywhere but to what he needs outside of what he recieves from school...Gotta get that DDD rolling here, it would help him somewhat, better than nothing right?

Oh and as long as your daughter has you, she will always have a future, because she has a angel looking out for her, and for all of us for that matter..Great post thank you for sharing with us..Keep the faith.

[KearasVoice]

Apr. 3, 2008 at 2:33 PM You always have a way with words...Your the bomb!!!!

[Avrille]

Apr. 4, 2008 at 2:42 AM I am totally with you on everything you said! Just wondered the other day that there should be more real life shown on TV in regard to autism, not ppl with money but ppl with autistic children all over the world. When I read posts in groups of moms struggling to get insurance approve the therapy or cryig because a therapy was denied or looking for smth because they say their kid doesn't need anything...well, I cry with them, cause that's all I can do, cry with mommas who love their kids & do not get the love from the state they live in. It's a shame! Yet, maybe, there's hope for the better. Again, CNN did a good job & AAP is trying to push some issues, so maybe we're getting somewhere & soon there will be hope we're looking to see.

[becka211]

Apr. 2, 2011 at 7:54 PM

Have you seen this documentary?

http://www.inheavenmovie.com/

Yes, his family has money and he has a special talent but it gave me hope for my little one's future.  There are functioning adults with autism, we as there parents have to fight for the best they can be.

[Alynn74]

Apr. 10, 2011 at 2:51 PM

  Your post is exactly how I feel-Thank you for posting !