Have You Seen This Video?

This video is the reality many older parents face with children who have developmental disabilities.  If you are a parent of a young child or teenager, it is crucial that we work together as one voice and let our Government know that we won’t put up with the lack of services and funding for our children.   Our children deserve better!

After watching this video.  I literally could not sleep for days.  I had anxiety attacks just thinking about what future my ASD son and family might possibly endure.

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Autism – A Mother’s Story. By Marion Pusey.

Autism, A Mother’s Story

by: Marion Pusey

Autism

“Eric and Sunset”
Shows Eric at 6 years old, at 15 years old and at 19 years old. Eric did the “Sunset” picture at 5 years old before he could talk !!!!

Before Eric was born, I was a nurse specializing in premature babies i.e. working at CHEO – Children’s Hospital of Eastern Ontario in the Neonatal Intensive Care Unit. Everything changed when Eric was born. Eric was born with autism but I could not get a diagnosis until he was 5 1/2 years old. His diagnosis was “autism with severe global delays”. My nursing career ended so I could take care of Eric.

Eric and Shaun (my sons) became my life’s work and through all my experiences (a lot of nightmares and horror stories) my passion has been to help other families so they won’t have to experience the same frustrations, nightmares and heartache that I have gone through. I figured that I could best contribute to the growing autism community by helping to provide visual resources i.e. Picture Card Communication and to be a supporting friend to other families who have loved ones with autism or other special needs.

Eric started his first words around 5 years old e.g. “milk”, “juice”. Up until around 8 – 9 years old he was echolalic; repeating everything he heard without showing any signs of understanding what he had said. Not having hardly any resources in Ottawa except the early form of ABA/IBI, I had to go a lot on instinct. From the very beginning, I kept talking to Eric and described everything we did and saw. … I figured that I did not know how much Eric was taking in even though he couldn’t talk. As I found in years later, Eric was remembering what I had said and done.

Eric was tactile defensive and had to learn about touch, textures, etc. He also had to get used to different sounds, volume, intensity, sudden noises e.g. balloons popping, school bells, etc. Eric also had Pica (i.e. he would mouth / put everything in his mouth), BUT I had an extremely hard time feeding him. No doctors understood the feeding problem and blamed it on autistic behaviors !!! As it turned out, we finally found out when Eric was 8 years old that his stomach wasn’t formed properly and he had to have surgery to rebuild it. Eric did not have the ability to let us know how he was feeling physically and emotionally.

Everything that Eric has learned had to be broken down into small steps. When Eric was around 7 years old, I took him to Beavers (part of the Cubs Scouts/Brownies/Girl Guides organizations). My instinct was to try to socialize him within the community. Eric was a pilot project because none of the leaders knew anything about autism. Also, Eric had very few words and no give-and-take conversation. On one of our outings with the Beavers, we went to a wave pool with a big water slide. Eric kept on pulling at my leg and pointing to the water slide…. I did not know at the time that Eric could not “generalize” i.e. whatever happens to other people coming off the water slide will happen to him. I decided that with Eric’s interest still there after watching about 30 people going under water at the bottom of the water slide, that I could double ride with him, holding him up at the bottom of the slide. …Well…we both went under water. All the way home, Eric kept repeating two brand new words “NOT FAIR !! NOT FAIR !!” The next day, Eric picked up a pencil and paper and started drawing water slides. Water slides have become one of Eric’s intense interests. He can draw them to photographic detail and quality. I figured out that with Eric’s intense interest in water slides, to take his interest and use it as a learning tool to grow and expand on. To this day, Eric’s love of water slide parks and amusement parks is so strong that he is taking courses at college so he can design and build them.

“Eric`s waterslide park”
(Eric did this picture between 10 – 11 years old)

One of Eric’s unusual savant skills (he has 3 – art, math and music) that he started, he started playing the piano incredibly well, perfect pitch and ear all of a sudden. He had never had a lesson !!! He just sat down and played !!! He played piano (and now music keyboards) so he could describe his feelings about water slides through music. Eric can sit down and play any music he hears and likes within 5 minutes !!!

Years ago, Eric could not understand or handle the world becoming more complex. The schools believed in (forced) integration i.e. “no choice” and that autistic children would become “normal” if they were around normal children !!! The schools never had enough money for a teacher’s aid for Eric. In grade 6 & 7 Eric had to share a teacher’s aid with 6 other children throughout the school. The teachers did not have a clue about autism and I as a parent was not allowed to go in to help Eric. The teachers did not adapt what they taught i.e. more visuals, letting Eric use “point form”, giving Eric copies of the notes, etc., etc. With all this happening my autistic son Eric became extremely aggressive, becoming a danger to himself and everyone around him. He would be sent home i.e. expelled from school at least once or twice a week, if not more because of “0 violence tolerance”!!! The Children’s Aid Society said that they would help us only in an extreme crisis.

That crisis happened when we changed a routine slightly and Eric attacked his younger brother. I peeled Eric off his brother, and then Eric continued attacking me. Eric’s brother ran upstairs and called “911”. Eric was taken to CHEO. All the doctors and Eric’s Neurologist would do is “drug him out” and send him home or I could take him to the Robert Smart Center. Eric spent a week at the Robert Smart Center, and then was transferred into “the Cottage Program” which was a part of the Royal Ottawa Hospital. Eric spent 6 weeks in the “Cottage Program” where they experimented giving different medications to Eric. The ROH staff knew nothing about autism !!!

During this whole nightmare, the Children’s Aid Society found a placement for Eric with Bairn Croft Residential Services. Bairn Croft staff specialize in children and young adults who are on the ASD spectrum, or have any communication, developmental and/or social delay or disorder. Each child’s care and programming is done individually to meet each child’s Individual needs. The families are considered a major need in the child’s life and are included in the “plan of care”. Eric comes home to us on weekends and holidays. Under Bairn Crofts care and guidance over the last 6 years, Eric has flourished. He has learned “skills of daily living”; he is now living semi-independently, has graduated from the Precision Machining Technology Program at Algonquin College, plays bowling with Special Olympics, has a job, has a girl friend and has many friends. By the way, if these kids do make it through to college, Algonquin College makes any adaptations necessary for their “special needs students” to be successful. …….. They have been amazing with Eric !!!

Eric is very happy and very proud of his achievements and we are extremely proud of him.

Through all this Eric has become fully verbal.

Graduation Photo

Eric’s Graduation Photo
(Precision Machining Technology Program, Algonquin College, 2006)

__________________________

Picture Card Communication

I create and make personalized/individualized visual resources and educational materials for people affected by Autism and / or other disabilities where communication is affected and their families, teachers, therapists, care givers, etc. These products are good for children who are “visual learners”.

I am a mother of a 28 year old son with autism. Eric was and still is a “visual learner”.

You can see an article with pictures of Eric and some of the pictures he has done in the CELEBRATE section of: www.AutismConnects.com.

Link to article with pictures:
http://www.autismconnects.com/publisher/articleview/frmArticleID/291/

Because of the above and for the love of Eric and wanting to help other families, I created my business:

Picture Card Communication
Website: www.picturecardcommunication.com

My experience setting up a home ABA Program – Part II

Part II:

Over the span of about two weeks I invited each therapist to our home for an interview. My daughter was present for each interview and I watched carefully to see how
the candidates would interact with her. I took notes throughout the conversation.

Here is what we talked about.

  • specific items on the resume that caught my eye.
  • years of experience, and experience with the very young (my daughter is 2).
  • scheduling and what they thought was appropriate for a 2 year old.
  • what the program would look like – basically the senior therapist designs and oversees the program. The lead therapists, or junior therapists will be the ones actually coming to your home to “do the program” with your child. The senior therapist will come every few weeks to check in on progress, and make modifications. The junior therapist in the home will contact the senior therapist as needed for advice.
  • would a separate room be required in our home, the “therapy room”.
  • would we need to buy any supplies?
  • Cost. The costing is very similar across all the therapists. Typically, the senior therapist can run between $60-$110 per hour. They only come a few hours each month. The junior therapist can range between $15-$25 depending on experience.

Once all the interviews were over my husband and I sat down with all the resumes, documentation and references and reviewed each candidate in detail.

The best advice I can give you would be to watch carefully for a special connection between the junior therapist and the child. We experienced that with our final interview and knew instantly who we wanted for our daughter! It’s very important your child thinks the therapist is fun so they can easily engage them in therapy. If a therapist doesn’t acknowledge or talk to the child at the interview then it’s best to keep searching.

Our program will be starting up in just a few days. Needless to say we are very excited and so happy with the path we have chosen for therapy. One thing I would like to point out is that we have some very talented therapists to choose from in Ottawa.

I’ll write again once we’ve had things running for a few months.

In the meantime, don’t hesitate to contact us if you have any questions about setting up a home ABA Therapy Program!

HR

Did You Know?

Image

As some of you may know.  We are currently working on a comprehensive roadmap of the school system.  Upon my readings and research I came across something that seemed worthy of a blog post.

The role of the IPRC.  If you are new to the school system in Ontario let me define this term for you.  IPRC translates to Identification and Placement Review Committee.  An IPRC document should accurately identify the child’s strengths and needs.  It is an invaluable aid in determining what measures should be put in place for the child’s education.

So basically, the the role of the IPRC has four functions:

1.  to decide whether or not your child should be identified as exceptional;
2.  to identify the areas of your child’s exceptionality;
3.  to decide an appropriate placement; and
4.  to review the identification and placement at least once each school year.

Stay tuned for the School Roadmap!

–Kimmi

Ottawa Autism Roadmap – Updates

Good Morning everyone!

It’s the beginning of the week and time to post our first update to the Ottawa Autism Roadmap. Feedback came in from various sources that we have reviewed and this resulted in a few modifications to our roadmap. We hope you will find it useful in navigating all the systems that are in play when a diagnosis of ASD is found.

As an additional update, we are currently working on roadmaps for other age groups. Those will be posted as soon as they are available.

We look forward to hearing from you!

When it’s not normal. Living life with Autism Spectrum Disorder. By Spectrum Mommy

A big thank you to one of our newest contributors, Spectrum Mommy! It’s great to have you on board with us!

When it’s not normal. Living life with Autism Spectrum Disorder.

We always knew something was wrong with our beautiful son Alex. As young as three months he could not tolerate family functions etc. Alex was petrified and would scream until we left or went to another room. My family thought this was normal. I thought, no way can this be normal.

We also noticed food issues. It started with feeding on a certain couch only. As he got older he would go off his bottles if he was sick, teething, or if there was some change. We could never get him on solids. Oh how we would try and try. Family again felt there was nothing wrong and he would eat if he was hungry. Yeah right. There was something very wrong.

He sat up at 8 months, crawled at 11 months and by 13 months was walking. Alex never, ever to this day put anything in his mouth and he is now almost 2 and a half. At 15 months we sought help for his feeding issues. We were referred to a great OT who specializes in food & she noticed more going on. It took some time before she could work with him, he was too freaked out. We made some home movies so she could see what was going on. Gradually he warmed to her.

The following spring when he was around 20 months we brought in a speech therapist because he was still not talking, no requesting, pointing and would not answer to his. After a few sessions she felt our son needed more intense therapy. Thanks to both therapists and our paediatric specialist we able to get him assessed quickly. The diagnosis of Autism Spectrum Disorder was devastating but also a relief. We could finally get help for our Alex.

By 2 years we has settled on private early intervention. Alex is loving therapy. He is now thriving and in some areas we are seeing great improvement. I can’t tell you how much more responsive and social he is. He is playing with toys, intensely curious, starting to point and communicate. Still no movement on the food or talking but that will be the most difficult areas to overcome. We are so optimistic and excited about Alex’s future. I tell you life on the spectrum is never boring. We really learn how to celebrate and appreciate life’s little subtleties. I cant say enough wonderful things about early intervention. We are so enjoying our little Alex grow and blossom. I look forward to sharing our journey living life on the spectrum.