Posts Tagged ‘sign language’

Can I vent a bit here?  Over the past 3 years, since our son’s diagnosis, I have found a troubling issue.  To date, I have found not a single support group or organization who has support for families with children who have Classic Autism.  Shocking, right?  You would think that there would be something out there for us, but I have yet to find one.  It seems that the support, even in groups with the words “Autism support” in the title, are mainly a support resource for families with an Asperger’s or PDD-NOS diagnosis.  So, what is the big deal?  Let me first explain that while they are all on the spectrum, there are 3 big differences between Classic Autism (aka Autism Disorder, Infantile Autism, and Kanner’s Syndrome) and the more understood, Asperger’s Syndrome.

According to the Autism United, there are 3 primary differences between Classic Autism and Asperger’s Syndrome.

1. Cognitively, those with Classic Autism have delays that they often never overcome. Those with Asperger’s are often very intelligent and test at or above average in cognitive abilities.

2. Those with an Asperger’s diagnosis may have some speech delays in part from lack of use but are on track with their peers in speech ability.  Those with a Classic Autism diagnosis have speech developmental delays and a large percentage (I read over 80% on another website) never develop an ability to communicate through speech.

3.  While those diagnosed with Asperger’s will typically be uncomfortable in social situations and often behave in a socially awkward manner, they often are wanting that social contact.  Those with Classic Autism are typically completely unaware of any need for social interactions.

What these differences mean to me as a parent going to a parents’ support group is that when parents of Aspies or those with PDD-NOS are talking about how therapies, supplements, dietary changes, and in some cases medications have helped their kids, I am at a loss.  There is very little common ground.  While our children have the spectrum in common, the daily issues that comes along with it is different.

Some parents complain about their child being socially awkward and at times violent when things don’t go as the child thinks that they should.  Our son often appears to not even notice there are others in the room.  If a toy is taken from him, he simply ignores that and walks away.

Some parents talk about how difficult it is to get their child to learn social stories and how to appropriately talk to others.  Our son never speaks other than the rare chatter/vocalization that you might expect from a 6 – 8 month old who hasn’t learned letter sounds or words yet.

Parents talk about the wonders of ABA therapy and what marvels it has brought to their child’s life.  I am happy for them that it worked for their child.  It was a total flop with our son.  I have learned to work around that, but the hardcore ABA supporters are shocked that I would not force ABA onto our son whether he complies or not.  We did try it for a few months, but got nowhere.  I found a gentler approach worked best for him and got more progress with it.

Many parents that I have spoken with are firm believers in the wonders of the DAN doctors’ protocol of supplements and other treatments.  While I and my husband do agree that a healthy diet is best for everyone, we do not believe the DAN approach to be the cure-all that many parents say it is.

These are only a tiny bit of the differences that we have found that demonstrate the difference between the issues we face in our home compared to the issues that parents of Aspies and PDD-NOS children face.  Aspies and PDD-NOS have a much higher functioning level than our son.  That in and of itself makes a huge difference in the way our lives are lived each day.

Sadly, I have never found a group that has even one member/family that has a child with Classic Autism.  The popular nationally known Autism organizations cater to the moderately to high functioning diagnosis.  It makes sense in a way. Over 75% of the diagnosed cases are Asperger’s or PDD-NOS.  Those with classic Autism only make up about 20% of all diagnosis.  It is understandable that the information and trainings are geared towards the majority of cases.  In the years since our son’s diagnosis, I have always received email updates of conferences and workshops to train professionals and families about how to work with those diagnosed with autism spectrum.  I have yet to see even 1 workshop or session at a conference that addresses something that we can do with our son.

The therapists that we had through early intervention were a mess to deal with. Even though they were provided a copy of the detailed report for our son’s diagnosis and what he would need, they ignored it completely.  Instead, they had their own agenda of what they wanted to do and acted as though he were a higher functioning child instead of working on building up from where he was currently.

I think one of the most ugly and hurtful parts of this whole thing is that there are those with higher functioning kids who have come right out and said that if we wanted our son cured, we would do the therapies, drugs, and treatments they have used. One came right out and said (quoting Ms McCarthy, I believe) that parents who don’t do the DAN protocols with their children are not wanting their kids to get cured.  That is a positively evil thing to say!

Classic Autism is a neurological disorder.  It is NOT curable through supplements, therapies, drugs, or diet.  No matter what we do, our son will always have autism.  That is the fact.  If the protocols and such helped their kids, that is great.  Don’t you judge us however if we do not see the benefit in doing things YOUR way.

I am with my son 24 hours a day, 7 days a week, 52 weeks a year.  I know what works with him and what does not.  I know his dietary issues and we have changed our family’s diet so that we all are eating as he does.  We are working on teaching him and our daughter to do ASL signing in conjunction with speaking to him.  He has a method of communicating with us that is unique to our family.  His method is one that makes his feelings and wants obvious to others around him.  We have learned that he can communicate through pointing to pictures or objects.  My next project is taking a lot of pictures of his favorite things, activities, and foods to make a communication board for him to use.

In homeschooling Pookie, we have found that he needs many breaks in between his activities.  About the only time he will sit still is when he is painting or sitting with me as I read to him.  He does listen though, even when walking in circles around the room.

Our days with Pookie are not complicated, but they are definitely different from a typical child his age or a child who is higher functioning.  In some ways, he is like a young toddler instead of his nearly 5 years of age.  There are basic skills, such as feeding himself, that he is unable to do.  Not because we spoil him, but because he seriously is unable to do it at this time.  We know he will one day, and encourage him to try, but for now he is not able to do so.  At his age, we still have to aid him in dressing.  He can do a little, such as put his arms into the sleeves when you hold his shirt.  But he doesn’t even attempt to try on his own. The list goes on and on.

I have decided to post more on this blog about what daily life is like. I will of course have homeschooling and family information. With such a lack of information and support for families with low functioning Classic Autistic children, I want the blog to be a place where they can find someone who is going through it too.  Maybe even find encouragement from time to time.

I have felt so alone in this journey at time.  Yes, I have my husband and my faith in the Lord, as well as the prayers and encouragement of our church family.  I have never met anyone though who has a child like ours.  Someone who is walking along this path also.  A person who understands the daily challenges that we face in a world where our children’s needs are often overlooked by professionals who are better trained to work with the moderate to higher functioning children.

I don’t want others in our situation to feel alone.  Maybe, along the way, we will learn that we are not alone either.

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Pookie has been consistently doing something new the past 2 weeks.  He is starting to talk!  We are so excited for him.  The Lord is doing great things for Pookie.  The speech is coming in single words, but his point is being made.

About a week ago, I took him out to the car to run a couple errands.  As we started down our gravel road, Pookie said “town.”  I answered that yes,we were going to town.  He repeated the word town again.  After going to a store, I took Pookie to the car.  He patted the side of the car, with a look of longing on his face, and said “home.”  He wanted to go home!  I let him know that we were done and going to be going home.  He smiled and repeated “home.”  This progress for Pookie is huge!  He doesn’t talk like that very much, but the fact that he did it gives us hope that he may one day be verbal.

I am still teaching him sign language, but doing it through signing as I speak to him.  I tested him one day.  He was wanting a snack.  I normally will ask him in signing & verbally to show me what he wants.  One this occassion, I asked in signing only.  He took my hand and let me to where his snacks are kept.  He pointed to the snack that he wanted   He understood what I had asked him.  I hadn’t been cetain if he responds to me due to the verbal or the signing prompts.  This allowed me to see that he is learning the signing.

I am so excited for the progress he is making.  The meltdowns are almost non-existant no.  I am convinced that most meltdowns are causd from frustration.  Not being able to communicatea need would frustrate anyone.  As he gains more ability in communication skills and make his needs/wants known, the frustration level has dropped significantly.

I am excited about homeschooling Pookie.  I am seeing the difference in him.  He must have interactives to learn at this point., but I am finding ways to accomplish it.   I am so grateful to the Lord for His blessing in this.

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