Regrets

Do you know what social workers are for? I assumed they helped people in difficult situations find solutions, cope, or comfort of some type. This week I had a visit from a social worker to help me apply for the appropriate government fundings for Ezra. Now I'm thinking that either this lady was really bad at her job or a social worker's job is to discourage and dishearten. She basically told me, with the accusation of thoughtlessness clear in her tone and body language, that she couldn't understand why we moved here, it was a bad decision for us financially, bad for Ezra because there is no school for him, Micah couldn't learn Dutch, they'll both be disadvantaged because they don't speak Dutch, and they'll make no friends, and we would probably end up moving back to America in 2 months because it would be too hard here. Then when I outlined the treatment plan that Dr.Greenspan gave us for Ezra (10 min sensory diet, 20 min floortime therapy, 30 minutes planned activities, for 8 hours a day during 3 years) she just looked at me and said: is this what you really want? This is too hard. She might have been going for empathetic, but rather than helping me find solutions I found myself looking at brick walls that were about to fall in on me. I didn't know what to say. I just looked at her in disbelief thinking to myself, if the foremost authority in the world on childhood developmental delays gives you a plan with which to help your child make up for a brain defect that is not his fault, so he can some day live on his own and be a valid member of the community, would you NOT do everything you can, so your child can have a chance at a life? Even if it meant giving up your dreams, your time, and worst of all risking that your second child feels less valued and loved because Mommy spends so much time with his older brother.

Some days I wish for nothing more than for people to understand how hard it is to raise a child with special needs. Talking to this social worker on the phone the first time, she seemed to be the first person with no special needs children of her own to validate how difficult it is. I felt understood and for a brief moment, better. But when that understanding of the difficulty of the situation carried on by her drawing out in minute detail exactly what can, has, and might still go wrong....I don't know. Perhaps being understood is overrated.

I have been looking for a school for Ezra. He is already very delayed in receptive and expressive language. Adding another language, one that I don't speak, would further delay him significantly. Perhaps I should explain a bit about brain defects such as Ezra's. Most kids come wired right. As long as they receive stimulation and can form an attachment to a person they will develop without much help. They will learn to walk and talk, share and play, use their imagination, and relate to other human beings. There are things you can do to enhance the intelligence of your baby. The more purposeful and loving interaction it gets from one on one attention, the more brain connections are made. The more brain connections the higher the intellect. Now most of this happens all before the age of 6. By 6 the brain is pretty much hardwired. One of the reasons kids with a brain defect are so far behind is because if it isn't diagnosed early enough, they miss this hard wiring phase, and it becomes infinitely harder to catch up. Imagine trying to catch up with a car that is driving 100 miles ahead of you at 80 mph while you're driving 81 mph.
Anyway, so here in the Netherlands there are four types of schools. There are the regular dutch schools that have 25-32 kids in the class. Impossible for Ezra. Too much noise, too many distractions. Then there are the special needs schools: the one for the blind, the physically and mentally handicapped, the communication delays, and then the ones with behavioral problems.
So where does Ezra fit in? I don't know. He needs a place where he can receive one on one attention, but also interaction with typically developing peers. It seems that here they have only either handicapped or typically developing. It is very discouraging. I won't launch into detail about finding schools.
What is so hard about this situation right now, is that he has only 2 years left for his brain to be hardwired, and the fear that I (and Dr.Greenspan) have is that adding Dutch is going to significantly delay him in his already hindered communication. If it was German I wouldn't worry so much, because at least I speak it...but Dutch. And just having him stay home with me is not making any of us happy long term. I saw him light up like a Christmas tree when there were lots of kids on the playground. He wants so much to interact with them. In this regard I regret leaving Bloomington. He had great friends there, and a great school. But then what else was there to do? Aaron got this job, and a job is a blessing. And the fact that Aaron needs cat scans every 6 months for his cancer follow up and we couldn't afford health care in the States...we had to come to Europe.

Anyway, it is getting late and the rock music from across the street has finally stopped. They are celebrating 65 years liberation of Eindhoven.