I saw a picture of an iceberg on FB and my first thought was, "What and apt description of parenting a child with FASD/RAD/AD."
Most of these children look perfectly normal and when you see the supports put in place, you may wonder if they are necessary.
What you don't see are the invisible disabilities that are hiding under the surface.
Another thing to remember is, the child may be doing well because of the supports. Take his props away, and you will catch a glimpse of what lies beneath the surface.
We have put many supports in place to help our children, especially Joseph. We all need supports that are unique to our needs.
We keep Joseph in line of sight all the time. He needs an adult to be his external brain. Someone to guide him, question him before he acts and so on. We can see how he interacts and coach him on the correct way to relate to his peers and siblings.
Recently we have rearranged his school schedule. We have a one to one teacher/child ratio and already we can see a difference in Joseph. His teacher is able to keep him regulated, something that is next to impossible in a mainstream classroom. Staying regulated is the key to more freedom for Joseph. Last night it snowed and he played outside with the other children for 15 minutes without having a meltdown! What was even more amazing was that Dean and I weren't outside with him. We could easily see him through the patio doors but we didn't have to be right by his side!
We have an alarm on Joseph's bed so we know if he gets up at night. We use it for naps and times that he needs to be in a safe place while I do something like make private phone call. We are working on his new bedroom. A room where he can have all his toys and play safely without the temptation of getting into his brothers things. Before we installed the alarm, Joseph found his big brothers toys to tempting to leave alone. Inevitably things got broken sometimes accidentally and sometimes they were in Josephs way when he was upset.
We hold Joseph's hand in public places because we don't trust him to stay with us. He is like a toddler, they don't walk very fast until you have your back turned, then they vanish in a moment. The thought of all the unsafe people out in the world and my vulnerable little boy who has no stranger danger at all, is scary.
I bought him an Emergency Alert Me Band in case he does get lost. I don' know how helpful it would be but this way I know I am doing all I can.
We don't have a 504 or IEP for Joseph but the school/teachers are aware of his struggles and are working with him accordingly. Joseph attends a small private school which makes it easier for us to work closely with his teachers.
He receives OT once a week and it has done wonders for him. His therapist is amazed at the progress he made in the past months. There are many services out there for our children, unfortunately sometimes it can be a struggle to attain them.
Many children with FASD also have SPD to some extent. Joseph likes his beads and weighted blanket. There are a lot of tips and ideas for children to get their sensory needs met on P*nterest.
For those of you with children prenatally exposed to alcohol, I found an awesome website. You can find it here. I haven't had a chance to listen to all of the webinars but the few I have listened to were excellent.
What supports do you have in place for your prenatally exposed child?
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