Jones Family

new programs for people with disabilities

Testimonial by the Jones Family

Monday, October 11, 2010 FILED IN:

Testimonails

Location: San Diego, CA

Family: Jones

In their own words:

My two children, Jessolin and Random, are both autistic, and have their own special ways of dealing with things. Though brother and sister, they are mirror images: Jess is socially quite amiable, but not very self-aware. Random is very self-aware but doesn’t care what’s going on around him. Jessolin taught herself to read, Random struggles. Random is able to randomize his speech, Jessolin is almost entirely script-driven. She is very gifted musically, and he enjoys music and is working on his Rock Band skills. After much work, we found them the right public school, and have them each mainstreamed there. This means there’s weekly homework, and this is the largest struggle of all. They struggle with my instruction, and Pam has been able to read each of them in their differences and find exactly the way to instruct them and help them with their tasks.

Getting them to sit at the table and do any kind of paper work or school work was impossible, in every way. They resisted entirely, they refused, they would not participate. Pam is able to entice them and get them to see it as a fun and exciting activity. They both are drawn to her, and see working with her as a treat, not a chore.

I had considered academic help over the summer to prepare my daughter for 2nd grade, last year, as she would be fully mainstreamed at our new school. She was woefully unprepared and I wanted her to be ready to hold her own. After all the referrals from other parents and the Regional Center, I finally did my own web search and found XCite Steps. The program sounded exactly like what I was looking for, and after meeting with Pam, it was clear that I had the right group.

My initial experience was of Pam coming to our house, meeting the kids, discussing their strengths and weaknesses, and talking about what we’d be doing each week. I had some workbooks, she provided a workbook for my son, and he was totally plugged in right away. My daughter struggled, screamed, fought, refused, and generally persisted in her refusal to write anything by hand. Pam offered her a choice of writing tools: pens, markers, pencils, etc., and she stopped struggling. Giving her a choice, an option, opened the idea to her that she could choose to participate. Now, she still struggles. She hates to write, but Pam is able to give her incentives and help her with the more mundane of the tasks. We are looking at more innovative ways to help Jess with her writing, and Pam is always inventive and excited to try something new.

I didn’t initially know if this was the right program for my children. I knew I’d have to try it out, and see if it could be tailored to fit them. We had had a bad experience with in-home services for my son with an ABA program, after his initial diagnosis. I was trepidatious, but needlessly so. After the first few sessions with Pam, I knew we’d be sticking with this plan for a long time.

We receive one-on-one mentoring, tutoring, and we have participated in the social side of things during summer camp. We would participate in more, but time can be difficult right now. However, we intend to continue to explore options.

The commitment to work with the kids in their environment is what makes Xcite Steps unique, and especially the giving help that Pam has made to us is unique: she has helped me with them on the day I had to take my husband to the hospital, she has offered to come stay with them on nights we have events that our other sitters could not make, and she is there to listen if I ever just need someone to listen to me. My kids are learning, participating in school projects, and homework, and Pam is a real friend to them and to me. Few other service providers of any level have that kind of commitment to us.

I have recommended XCite Steps to many other families. I think a lot of families of autistic kids feel very protective of their children, and fear exposing them to ridicule or social settings that may cause others to criticise their children. I personally feel that giving our kids a chance to show what they can do, and can cope with, in the public social settings helps them to grow and gain confidence. And it can help families plan for the eventual mainstreaming their kids may encounter. I feel every child should participate in mainstreaming and giving them opportunities to share what other kids experience is part of that. XCite Steps gives them a comfortable safe environment to simply be the kids they are, and may very well open doors for them that will lead to much more enriching and involved lives.

Random shows me the papers he’s worked on, Jessolin tells me things like, “I DID IT!” and they both come away looking tired, but as if they’d accomplished something. That’s excellent feedback as far as I’m concerned. And when they can hand in homework with their peers, it’s got to feel good to them.

I can’t always tell if they are enjoying the program. My son had some separation anxiety during the summer camp program, but he got over it. My daughter sometimes really hates to do homework, but we get her through it. I see their results in little ways: when she will have reading group discussions in the coming week, she’ll have explored the material with a wonderful guide; when my son is facing other social outings via school, he’ll have had the experience in a group that was kind and understanding. They don’t seem to be afraid of the new as much as they used to. I feel that speaks volumes.

The improvements I have seen in my children are a greater willingness to work on their school work at home; more confidence in social settings; willingness to try something new at a new place; overall more spontaneous speech patterns–this was a big surprise and something we’re pleased with.

We’ve only worked with Pam Machala, and she’s been a miracle in our lives. They love her, trust her, and are willing to work with her. I know they worked with other people at the summer camp experience, but I didn’t meet anyone personally–it just didn’t work out that way for me. But they had a great time, were tired out, and on the days my husband tagged along (to the children’s museum notably), he was impressed with the way everyone behaved together.

I have only had one other parent acknowledge knowing who XCite Steps are! And their response wasn’t entirely positive, and I have no idea how that can be! I would like to see XCite Steps more well known by other parents, and hope that maybe they could speak at a CAC meeting or that other inroads could be made to make more parents aware. I would like more parents to experience the huge change in their children’s lives that we have in our family.

I hope this has been useful for you. I just could not be more pleased.

Thanks for your kind understanding in all our recent turmoils.

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