Holly and Jake

[Guest guest]

BTW - with all this talk of inclusion and an inclusive educational

environment:::: Burke attended private schools and at a very young

age (seems to me I remember 8 or 10) he attended boarding private school in

MA. He attended the Kennnedy School in NY and then the Cardinal Cushing

School in MA. He was NEVEr included in a school environment. Why doesn't

NDSS acknowledge that fact???

> Hello to all! I wanted to pass along the letter than my husband sent in

> response to the NDSS response letter. My husband rarely puts words to paper

> for things like this, however, when issues like these touch so close to

> home, he gets the job done. The last time this happened was when (on another

> board) we got into a discussions (or beratment) of the non inclusion route

> of education. Meredith remembers the discussion. It was not pretty! ha!

>

> I understand Joan's not wanting the response letter from NDSS out but I do

> have a copy of it (I forwarded it to Dr. Capone) so if anyone would like a

> copy, you may request it from me. I will not post in on this site because it

> is pure rubbish. I know many of us parents will feel it necessary to post a

> reply to them personally.

> I hope our voices are being heard!

> Holly

>

> NDSS Response Letter to Dr. Phil

>

> Ms. Schleider,

>

> I am writing in response to your letter to Dr. Phil dated March 26th, 2008

> regarding the portrayal of children diagnosed with both Down Syndrome and

> autism.

>

> Our nine year old son, Jake has both DS and autism. I often think that our

> community should change how we describe our children. We should speak of

> their autism first because that is what dominates our lives. The truth is,

> we start out parenting our children with DS as if the DS is merely an

> obstacle we have to overcome. We get through this period hoping our kids

> grow up to be high functioning kids that just need some minor encouragement

> to become independent people in the community. I personally got through the

> shock that our newborn son had DS by envisioning Jake living at a horse farm

> cleaning stalls and feeding the animals. He would have daily conversations

> with people that are grateful that someone is watching over their horses. I

> thought that I could create that lifestyle and enjoy sharing that with him.

>

> It turns out that every day of our life we see more and more limitations.

> Did you know that a study found that autism is a progressive disease in

> children with DS? It makes sense when you understand how the dual diagnosis

> is done. At first, everyone states that the child is too social to have

> autism. This prevents evaluation at an early age thereby eliminating more

> intense early intervention. After enough time goes by and the child

> progresses the parents force the issue and get the evaluation process

> initiated. The evaluator acknowledges the autistic tendencies and will

> diagnose the child as low on the autism spectrum giving a label such as PDD.

> Eventually, there is overwhelming evidence that the child is autistic.

>

> A very different mindset develops when you see more limitations daily. We

> all have the little things that trigger self pity when we see it. It was

> seeing an older couple with able children for me at first. Now, it is seeing

> a family with a " normal " child with DS. I sit there thinking how much better

> our life would be if Jake only had DS. It is amazing how perspectives change

> and how fast your vision of life changes. Jake is so scared of animals that

> he will freeze and scream until we eliminate the " threat " . So one more dream

> is gone.

>

> Your letter was typical to the types of responses I have seen from the

> Down syndrome community and completely ignores the needs of others with

> lower functioning children. You completely missed the purpose of the show in

> that it was about children with both DS and autism and their parent's

> struggles. It was not about Burke and the people with DS that function

> on Chris' level.

>

> We have run across this attitude several times in our short history of

> raising Jake. We are often chastised in the community for not wanting Jake

> to be included is school. There is a very vocal population that believes

> there is only one solution for all kids with DS. I can only imagine that

> they are the parents of high functioning children. I also imagine that they

> are judging my parenting skills based on their children's abilities. This

> attitude is very short sighted and will only limit the choices they have

> later in life. How many Burkes will you have to display to offset one

> of Jake's outbursts in an included classroom? Jake will be completely lost,

> bored and will quit listening to the teacher. Eventually, he will become a

> significant " problem child " that all kids will talk about at home. I

> personally would not want Jake in my daughter's class; it is not fair to the

> other kids. Jake's best chance for education is a life skills class. The

> people that know him believe that, but the people that don't think I am

> being a bad parent.

>

> What is NDSS doing for people with both DS and autism? How much of your

> marketing budget do you set aside for educating parents, educators and

> medical providers that this possibility exists? Your letter states that 1-7%

> of people with DS also have autism. Dr. Capones' article " Neurobehavioral

> Disorders in Children, Adolescents, and Young Adults with Down Syndrome "

> uses a figure of 18-33% for all neurobehavioral issues. The number stated on

> the Kennedy Krieger website for autism uses 1-10% with Dr. Capone estimating

> 5-7%. You used the term rare when quoting these numbers. People with born

> with DS is rare at one in 500 to 1000. NDSS wants people to know how

> significant this is and then ignore numbers that are significant such as one

> in 10 to 100 when refereeing to issues within the population with DS. I

> suspect that there is no budget set aside for this type of education. Part

> of that is the fault of parents with lower functioning children and part of

> that is with NDSS. I have never felt NDSS has represented us. I suspect that

> others with lower functioning children feel similar and therefore have not

> become active at NDSS. Once the diagnosis is in place, we are moving on to

> solve the more important problems in our lives. We should be more vocal in

> the DS community so that the next parent has some guidance.

>

> As marketing director, how do you plan on reaching out to this not so

> small segment of the DS community? There is significant recovery that is

> needed. We feel excluded from this community because of these types of

> responses from both the NDSS and the well meaning, but ignorant parents of

> high functioning individuals. Just look at the types of responses to the Dr.

> Phil program to see how parents of " normal " children of DS judge those of us

> with different problems to understand why we don't feel welcome at NDSS.

>

> Sincerely,

>

> Joe Giglio

>

> Father of Jake Giglio

>

>