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BellaOnline's Autism Spectrum Disorders Editor

Discrepancies through Support Network

Raising a child or two on the autism spectrum requires a support network of professionals. These include a teacher, paraprofessional, respite worker, therapists, social worker, pediatrician and other related health practitioners. The other side would be the family members, friends, online groups, social media outlets, neighbors and community members.

At the time my sons were diagnosed with autism in 1998 and 1999 I did not receive any negative comments or reports stating what their future lives would lack or how their options would be bleak. Yet over the years it seemed every book I would read, whether it was written in 1995, 2000 or 2005 always told a story from a family that received such devastating news about the future of their newly diagnosed child on the autism spectrum.

Another commonality with those stories was how each book was written to fill the void of books that were nowhere to be found. They must not have read all the books I perused over the last decade. Even though I had two sons fifteen months apart on opposite ends of the autism spectrum, I could not relate to any of these family stories since I had not been told of the doom and gloom that was yet to come.

While our lives have not been pure bliss, we do not focus on the negative and try to take it one new goal at a time. My kids have different issues that do not require the same type of therapy. Usually we work on the most pressing goal that is needed to get to the next stage of life. There is no interest in sports or music and support groups tend to meet in areas that are not in our immediate vicinity.

For the last year Matthew has been receiving ABA therapy in the evenings three to four nights a week. Toilet training is the issue at this point in time. I am also an IHSS worker for my son, which has gone through changes that require documentation from a Physician.

Due to new laws we had to get some reports filled out by the Physician so I chose the Developmental Pediatrician since we have been seeing her regularly as a result of the medication now being prescribed by this sub-group within our Pediatrician's medical group. We started with the Neurologist, but he was not familiar with the medication Matthew has been taking so he referred us to the Developmental Pediatrician.

Upon receipt of the forms is when I first experienced the harsh reality of what this Physician wrote in the comments section regarding my son. The form states:

"Without In-Home Services, the patient would

Need medical out-of-home care
Become unemployed
Be unable to remain safely in own home."

These boxes were checked with the following comment next to become unemployed "is not employable. Matthew is not capable of living safely on his own." She even underlined not twice!

I could look at this statement to mean I have job security, but instead it felt like a kick in the gut. The Developmental Pediatrician even included a four page report I had never received. She critiqued both Matthew and myself during our visits, which left me feeling very uncomfortable.

"Matthew is quiet this afternoon, smiling at inner thoughts but giving longer eye-contact with laughter and spontaneously unrelated affect. His laughter is out of context but secretly amusing to him alone.

He smiles and looks about the room, he shuts off lights, turns them on again, puts the trash can and two boxes of tissues outside. He leaves by way of shutting off the hallway lights. He refuses to blow his nose, despite stringy mucous threads sliding down his face to his shirt."

Now I resent her remarks and assuming she knows what he is thinking and then not grasping that he does not yet have the skills to blow his nose. Maybe she could spend some time showing me how to teach this skill instead of noting, " still fast talking, mother happily reports her son is soon to receive supportive services from Regional Center."

I have ABA professionals in my home asking me what life skills I want to work on next for Matthew. They are covering tooth brushing, hand washing, tying shoes, filing his nails and toileting. At school along with his IEP is the ITP, which is the Individual Transition Plan. The legal age for the ITP is 16, but within LAUSD they start adding ITP to the IEP document at age 14.

The ITP is a document within the IEP that covers transition activities, employment post secondary goal, employment development transition activity, community experiences transaction activity, independent living and activity to support goal. The responses are based on teacher assessment and parent interview.

We discussed this in an ABA session before the last IEP and the therapist thought Matthew would be good at picking up the tools in an auto garage and I said organizing books at the library. His current class in ninth grade is part of community based instruction. Each week they go out into the community via the subway and bus. They eat lunch and do errands. Daily the class walks around their street collecting recyclables that the teacher turns in to utilize for their bus fare.

I have positive feedback and goals from the teacher and aide saying Matthew is doing great on these outings. The ABA personnel are wanting to teach new skills to help Matthew become as independent as possible. Store personnel communicate with Matthew and treat him kindly.

If only the Developmental Pediatrician was less harsh and more helpful in this transition into adolescence and a few short years adulthood.

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Content copyright © 2013 by Bonnie Sayers. All rights reserved.
This content was written by Bonnie Sayers. If you wish to use this content in any manner, you need written permission. Contact Tara O´Gorman, MSW for details.

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