Life at the Bloom house has been somewhat status quo recently.We are having our ups and downs, some days are easier than others, but for the most part, we are finding our way and it has been nice to have all 3 boys home together for the past month.
We are getting used to and enjoying having our new respite workers. Peggy comes to be with Matthew on Saturdays- they spend time together, play ball, and she is a wonderful support to him. Having her come allows David, Jacob and I the ability to get a break from Matthew's intensity. We can grocery shop, hang with friends, or just be home and it can be quiet for the 3 of us. Matthew truly depends on structure, and the slightest change in routine can make it hard for him to continue. He doesn't react to the change with a tantrum, however, when there is too much change going on, he is likely to tantrum over something else because the change has been hard for him to handle.
David is enjoying having a respite worker on Monday and Tuesday nights. Joceyln is truly wonderful. She understands David and appreciates his quiet nature. When he is over the top bonkers, Jocelyn has learned to help David calm down. She reads with him, they build legos, she enjoys being with him, and he LOVES her after just 2 weeks.
I am currently waging battle on two fronts.
1. I am looking for a psychiatrist for Matthew who I trust and respect. His current psychiatrist is not someone I have ever felt understands me, but like most things with Matthew, he is caught between two worlds- the world of children with psychiatric needs, and the world of children with developmental disabilities. The local psychiatrists feel like due to Matthew's IQ he needs to work with a pschiatrist who understands children with developmental delays. The only psychiatrist who works with children with developmental delays is the one we are currently seeing, so it is a catch 22.
2. I am once again feeling torn between supporting my son and silently trusting the school district. Since last year Matthew has sat behind a half wall in his classroom, so he can best focus without distractions or distracting other children. As I have been evaluating Matthew this year, I realize that he often does not want to go to school, and I have to agree I would not want to go to school to sit by myself all day. I would feel very disheartened sitting alone on one side of a wall. I met with his teachers and whole team a few weeks back and asked that they remove the wall. Now more than 3 weeks have gone by and the dividing wall is still there.
In my opinoin, if Matthew needs to be alone in a classroom to learn, he is not in the right setting. Every person who walks into matthew's room- parents, kids, teachers, adults, sees him alone on the side of a wall. This can't be good for his self esteem.
A week from today I will be meeting with Matthew's team and the Chairperson for the Committee on Special Education for his school. I feel passionately that i have to ensure that this wall comes down so that we can accurately assess what Matthew needs and how we can best help him, without ostracizing him or making him feel alone.
Being in the same spot, I know what you are going through. Have you tried to get into Albany Medical Center's Behavioral Health Pediatric Unti (262-5401) for MD and Counseling services? ALSO, the Centers for Disability have a 9-12 month grant where they assign you a FREE case worker to work with you on issues in the home. There are a few steps that you have to do to apply, but the grant money is there and they are taking families. Contact me if interested in learning the process. Mine took 1 week to get all of the paperwork, now I just await review.
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