What Including Kids Has Done for My Son

13 03 2011

This is a copy of a testimonial I wrote in December 2010 for Including Kids, Inc. for them to use in their fundraising efforts. There are several fundraisers coming up for them including “Rock Autism” and their Boots & Bling Gala. For those considering attendance at either, I want to share our journey and how special this place is.

Patrick was diagnosed in 1997 at 18 months of age, when autism was occurring in 1 in 10,000 children. From Jan 1999-May 2004, our school district did a great job educating him, even introducing applied behavior analysis (ABA) to him in 2001 at which time he made significant achievement in growth and learning. A decision by one administrator in May of 2004 changed all that. By 2006, Patrick lost, by their testing, 81% of all the skills he ever learned. For the first time ever, Patrick started having serious behavior issues. Once all his skills to communicate were gone, he had no other way but to express communication other than in self-injurious behaviors. All the money and time that we had invested in Patrick privately to pay for speech therapy, a home program, and training for the school staff became a significant loss. But these losses would never match the grief of seeing our child go from a happy, loving, gentle soul to a child angry, frustrated, and hurting himself so badly that it looked like he had been abused. The stress of fighting with the school district to have them provide, at minimum, what the law says they should, had taken a significant toll on our family life and health. When the incompetence hit an all-time low and unethical behavior reared its ugly head, the only choice to protect him was to withdraw him. We knew when we offered to pay for proper training and oversight for his program and they declined, it was more about their infighting with us than it was about Patrick.

We called Including Kids, Inc. to see if they could help provide in-home consultation for our potential homeschooling when we learned about their new program, SOAR Academy. When we met with staff and were asked if we thought Patrick was a good fit for the program, we honestly did not know. Autism had taken a huge financial toll already, so we did not know how we were going to pay for this. However, somewhere in our souls, we knew this was the right choice. We took a step off a cliff not knowing if there was going to be a safety net to catch us on our fall. All we had was our faith that somehow everything would be okay.

Phrases we often heard were “given his intellectual deficits, how much do you think he can learn?” “Don’t you think 10 signs in 1 school year might be too much for him to learn?” In the first 9 days at InKids, he was already signing 3 to 4-word sentences and had learned 3 new signs. Every day I took the long drive home, I cried tears of joy because he was finally with people who saw his limitless potential. The sheer number of accomplishments from his August to December 2010 tenure at InKids would fill several pages. After one month, he tolerated his first rock concert, just one of the many firsts. He cares about things now and wants to make choices. He is shaking his head yes and no in response to questions appropriately. Clothes are being put on with just supervision. Two events stand out in my memory during this time period. A chip went down his throat the wrong way and his eyes started to water. I asked him, “What’s wrong?” He signed, “Help me” and then put his hands around his neck. It has been one of our greatest fears that Patrick’s life span would be cut short because he could not tell anybody what was hurting him. In 11 years, neither we nor the school district could teach him this concept. Yet, here in this magical place, they did it in 4 short months. Another beautiful moment occurred when I was sitting on the bed. I asked him to sit next to me. He did, then turned to me, tapped his fingers on my chest and said (verbally), “Mom.” A single-word symphony I will forever cherish. New talents have emerged such as planting things and cooking.

Patrick has moved from the darkness into the light again. He shows pride in his accomplishments. His sense of humor has returned with a vengeance. We often get notes home that tell us he just would not stop laughing all day long.

It is now obvious to us that since the school district did not believe he was capable of anything, he had no reason to prove anything otherwise to anyone. Even our efforts in our home program were failing because Patrick had no self-esteem. It was one more thing that was taken from him because of that one decision by one individual to close the district’s successful autism program. Now we see the smiling, happy child that he was prior to August of 2004 again. The stress in our home life has been greatly reduced which no doubt has benefitted Patrick as well.

In August of 2010, we were not sure at all if SOAR Academy was the right fit for Patrick. Now, we cannot imagine our son being anywhere else. We are Including Kids Lifers. Each and every one of these people at Including Kids embody what it means to be a true teacher, not merely an educator. Their dedication to the children and to their families does not stop at the classroom. Because the approach is so intensive, this kind of support for children with autism is costly. There are children on a waiting list who desperately need this school’s assistance. Please help Including Kids, Inc. continue to operate and grow so they can create a pathway for as many children as possible towards a life of not only working and personal independence, but also a life full of the same love and happiness and pleasures that you enjoy. On behalf of our family, we thank you for your consideration.



 

Patrick

My life teacher, Patrick.


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6 responses

13 03 2011
Christopher R. Cook

This is truly inspiring, especially to someone who is on a pathway to becoming an educator. It is truly uplifting to read stories like this, to be reminded that there is hope for children who suffer from such mental disabilities, as well as for the families of these children.

13 03 2011
PBMom

Thank you for your comment. I do not envy educators going into public school situations today. They are not supported many times by their administrations. I think for children who are nonverbal, it is very difficult to judge the level of their intellectual capabilities. My son has had IQ tests that put him at 30 and 45 (the inconsistency of the number should be the first sign that the test is invalid). When the teacher and we were on the same page, using the same techniques, working towards the same goals, things were great. There is a local news video they did on him if you would like to see. A visual sometimes is worth a thousand words: http://www.youtube.com/watch?v=wQrcoV9yaFI

14 03 2011
VerseCity

What a great real life story. We are excited to be a part of Rock Autism! See you there!

14 03 2011
PBMom

I’ve been playing your music to Patrick so he will be familiar with it. Looking forward to meeting you all there. He’ll be there as long as he can tolerate it.

28 03 2011
August 83

Wow what a great story. Including Kids sounds like an incredible organization. Having a child with disabilites is a challenge that we personally experienced. We are very honored to be a part of this event and are looking forward to it.

28 03 2011
PBMom

We are also having Patrick listen to your music to get aquainted with it before the sensory on-slaught of the people being there, etc. Thank you for being so generous with your time and I look forward to talking with you Sunday.

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