The Child Development Unit (CDU)
Having an OT was great, I know had access to all kinds of equipment. There was a triangular seat to support Suzanne to sit and toys for her to gravitate to. Suzanne was moving across the floor, not crawling exactly but pushing herself with her feet with her back to the ground, and able to prop herself up on one elbow to look around.
Tauranga had two organisations that worked with children with disabilities, Crippled Children, now CCS Disability Action and Intellectually Handicapped Children, now Idea Services. At first CCS were interested but when her learning disability was discovered she went to IHC. She went mornings at first and then school hours. It gave me some free time.
The CDU was an interesting place. There were children with all kinds of disabilities. Given my family history, I have always been interested in different types of disabilities particularly those with a genetic disorders. When I met a child with a new disability, I would go and research it at the library. I was always reading. One day at the library I ran into Dr Dawson. He asked me if I was checking up on him. Of course I am, I said.
Suzanne thrived in the new environment. The only draw back for me was if she had a large seizure, they took her to hospital.. I would get a call and rush up thinking the worst only to find it was just a seizure, she had them all the time, as far as I was concerned it was par for the course but they felt she needed emergency care, It seemed such a waste of resources, She always came out of them okay and would usually come home the same day or occasionally the next.
Medicating her to stop her seizures was tricky.. Dr Dawson and I discussed it at length, Too much meant she would sleep all day, too little meant she had too many seizures. Finding the right balance took some time, She was on Clonazepam. Dr Dawson said that more spread out it was, the better it was for her, so I gave it to her four times a day.
When she went to CDU, all the bags where left on the floor, Since Suzanne’s lunch time meds were in there, I was really worried one of the other children would pick it up so I put the medication in the only childproof bottle I had. It was an old one and it said 2 tablets 3 times a day not the one and a half tablets four times a day that the later ones said. You add it up it’s the same daily dose.
I got a call from the manager accusing me of under-medicating Suzanne . She had talked to Dr Dawson’s secretary and she said I was not giving her the right amount. I explained that I was giving her her medication four times a day instead of 3 to spread it out to make it more effective but she was adamant. She threatened to report me to child welfare for child endangerment. I rang the doctors secretary and hit the same brick wall. I knew I was right but for some reason they had decided I was wrong.
In desperation I rang my OT, I told you they were useful. She immediately could see my point, I told her I had tried to sort it out but they wouldn’t believe me. I was so frightened that Suzanne would be taken from me. It was just so unfair. She promised to ring all concerned and sort it out. I never heard any more about it. I didn’t get an apology either.
Throughout Suzanne’s early life, I really believe that staff saw me as just another issue that they had to deal with when working with Suzanne.
And I was determined to be part of solution not the problem.
© Barbara Hart 2014