After spending countless times feeling lost on how to build a solid reciprocal relationship with Javi and for him to build these types of relationships with others, I think I may have finally found the answer to our prayers.
Javi has a strong desire to socialize with friends, but sadly, as he gets older, most peers his age are less tolerant of his behaviors. They don't always know how to relate to Javi, unless it's one of Javi's preferred topics. He can carry on a conversation with people, but he many times will spit out random sentences that only make sense to him. He will tell jokes that make sense to him, then he laughs a kind of nervous fake laugh, that I have come to think is very cute, but I'm sure his peers are puzzled by. He has a very difficult time reading people's body language and giving people personal space. I have noticed over the years that kids his age are becoming increasingly intolerant of his behavior. When Javi was five, kids didn't seem to mind that he was a little different. At six, they began to realize that he wasn't like other kids. At seven, kids just began to ignore him at the park, despite making his best effort to be social. Now at eight, kids can be just flat out mean to him, which breaks my heart. I try not to be the hovering mother, but it is difficult in terms of safety for Javi and sometimes for the other child. There have been a handful of times where I have seen Javi make a new friend that he is able to play and carry on conversations with. When it does happen, I almost burst in to tears of joy to see him having a truly reciprocal conversation with another child his age. For the most part, I am trying to explain to Javi, that he needs to give people space at the pool or at the park and just try to relax. He can get so excited at times, I think of him as that cartoon we saw as kids with the big dog that has the little pet that he is squeezing the heck out of it until it's eyes pop out and saying "I'm going to love him and hug him and squeeze him and call him George." Javi tends to do this to many prospective friends that he meets, more figuratively than relatively, for the most part. Yes, at times he does squeeze them when he is having a desire for sensory input himself. This is the point where I am usually explaining to the other child's parent that he has Autism and he doesn't mean to be hurtful, he just needs sensory input.
After speaking with a friend of mine last month who also has a child with Autism, she had told me that she planned to start RDI therapy for her son in lieu of just the traditional ABA. He is currently in ABA, but felt that his main area of need was mostly based around social aspects. I had heard of RDI before, but I thought of it as another pie in the sky type therapy that we would probably never qualify for through the regional center and could not afford to pay for out of pocket, so I just cataloged it and said maybe I'll look in to it someday. At the time, we had been making a lot of headway with behavior modification, so I didn't think we really needed it either.
We have had a lot of compliance issues with Javi in our home and even though we use the systems that were taught to us by countless behavior consultants, teachers and trying things that other parents have tried, we have yielded very few results. We will find a system that works, it will work for a while, then Javi becomes bored with the system and the behaviors would start to increase again.
We have about six sessions left of B Mod and have made very little consistent progress. Like I said, things will work for a while, then Javi starts to loose motivation, even though we have slightly tweaked his "privileges" to an even more favorable outcome should he reach a "level 5 charge", he gets stuck in a downward spiral and has a hard time recovering. I struggle with his behaviors and counteracting them pretty much on a daily basis, which have not gotten better with the addition to his changes with his school, teacher and having to make all new friends. I try to empathize with him, but at the same time, I have to enforce rules to ensure that everyone makes it through each day in one piece, both mentally and physically.
The bond between mother and child is there with Javi, it's just different than it is with Kaylee and Ethan. I'm sure many parents of children with Autism can agree with me there. Their needs are just different. Javi didn't have that "rubberband effect" as a baby and toddler. If we walked down the beach together and he took off at a run, he wouldn't look back at 20 paces to make sure I was right behind him. He didn't care who picked him up as a baby, a perfect stranger was just as good as me as long as they took him or gave him what he wanted. He didn't reach out for me or anyone unless it was to move him to something he wanted. He just had a different way of doing things. It wasn't that he didn't love me. I know he loves me, it was just different, that's all. If there is anything I long for in life, it's to have that infinite bond with Javi. To know what he's thinking and know how he puts it together in that brain of his. To fill in those links that are missing in our bond and the bond he has with other people in his life. I am hopeful that RDI will be the simple answer for us. To empower us as parents and feel that we have a stronger understanding on how to develop our relationship with him. Most important, to help him become more independent and be able to build relationships with people outside our family.
RDI:
Think about your dreams of a typical day in your child's future. Do you hope someday, he or she will:
Not only talk fluently, but engage in genuinely curious conversations?
Delight in a true friendship?
Feel a sense of pride in being able to contribute to his or her community?
Enjoy the excitement and comfort of a boyfriend or girlfriend and maybe even get married and have children?
Feel capable and confident living an independent lifestyle?
Experience the satisfaction and rewards of successful employment?
The goal of the RDI® Program is to provide the majority of people on the autism spectrum with the potential to attain a true quality of life.
For more on RDI, please visit their website.
3 comments:
Shanna...even tho none of my children fall on the spectrum...my friendship w/you & Sharon has increased my awareness. Thank you for pouring your heart out! Wow...see you should write a book! You & Sharon could team up! I feel like I know you better & can possible be a better friend. Even if it is virtual! lol And *watching* as you learn to parent Javi (and the others) is just breath-takingly beautiful! (((hugs)))
...danielle
thx for this post - jaden has so many things in common with javi! luckily so far, the kids at his school & daycare have come to know jaden & his ways & aren't bothered too much by his meaningless (to them) jabber...they listen to his endless stories & even will draw pictures of dragons or bring him dragon stuff from home - just to try and relate to him...he feels that he has MANY friends & so far, i haven't witnessed any real meanness towards him (only some kids ignoring him)...but as he starts 2nd grade today, and has a whole new class of kids - some of which he's never met before, my worries start creeping in again...will he get picked on today? will his classmates try & understand him? also, jaden's starting to have more behavioral issues - he's almost becoming too smart for me & my old tricks aren't working as well any more...i've been looking into local therapies (unfortunately, i live in a rural area & we don't have as much offered here as what u appear to have in sunny CA)...and it's time for jaden's yearly eval with the children's hospital that diagnosed him...so now, i'm going armed with ?s - i want more! i want to know about every therapy/group/workshop there is around here! this RDI thing sounds awesome! thx girl!
Danielle- Awe...so sweet. Thanks for being such a good friend. It's nice to have friends that understand. I have become disconnected to so many of my friends with typical kids, because it's hard for them to understand my daily routine and with all the kids in school and therapy I can only get out in small bursts. Your friendship and the rest of my blogland friends have been such an important part of my life. I look forward to hearing all about your lives and your kids lives every time I sit down to the computer.
Mama- Hey that stuff I said above goes for you too lady!
Yes, Jaden and Javi do have a lot in common. It's funny :) Javi reads your posts with me, especially when they are about Jaden. He likes to look at all his art. He'll say "Can I look at mama skates blog to see the cakes, dragons and aliens?" He'll say "Jaden is just like me!! I like drawing and aliens too and we are the same age with our birthdays in the same month!" He also says "Those girls are so cute!" He talks about Trevor a lot too. He calls him 'the cute baby with the pretty eyes that is Kaylee's age'.
I'm getting the DVD for RDI tomorrow from my friend. We can talk about it more through email :) We are trying to attend the conference in LA together too. It's in October. It's big bones to go, so I have to cut down on my lattes to pay for it ;)
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