My precious special daughter is on the verge of a diagnosis at the age of eight years old. As her mother, I have always known something was going on with her.
She was born in the UK and there (at that time, perhaps it has changed since) every mother is assigned a health visitor. This is a specialised nurse who regularly calls to your home and assesses your baby’s health and development for around a year after the birth (longer if needed).
She (or he) would normally be the first to pick up on development delay or health problems and would work with you to get appropriate referrals made for assessment and treatment.
I kept mentioning concerns I had such as my baby’s extreme sensitivity to stimuli, her inability to bear weight on her legs, severe constipation and sleep problems. I was told all was within normal expectations (some only just) and I didn’t have the experience to question that.
From the time she learned to walk her strong-willed personality took on a whole, new monstrous form. She discovered she had freedom and refused to accept its curtailment. No buggy! She was also uncontrollable, though, you couldn’t tell her to stop and know that she would. More likely to do the opposite. So, we had to use toddler reins for her and she desperately hated that.
Everywhere we went she was either screaming and pulling at the leash or crying because she was too tired. I got a lot of nasty stares from a lot of little old ladies on shopping trips.
When a baby that is not yet two years old displays oppositional behaviour everyone puts it down to “toddler” stuff. Even though it is way more severe than anyone else’s toddler.
Every photograph of my girl from those years has her crying, desperate face and her hands reaching up into the shot. As soon as she saw a camera come out she just desperately wanted to have it herself.
She would do all the things she had been asked not to do. She would continue to do them while being asked to stop. In the end we would lift her away from the forbidden activity (though she would run straight back) and this could cycle on all day.
Completely unwittingly, I think I set her up for later problems. If anyone physically tries to stop her from doing something (or do something she doesn’t want to do) her instant reaction is violent and spiky. Hitting and kicking.
We had to put a gate on her bedroom door. We had to put all non-breakables in the floor-level kitchen cupboards. We had to lift her down from the window sills numerous times an hour.
Around two to three years we were advised to try the naughty step. It took hours to make her sit on the step for two measly minutes of time-out. Then, a few hours later, we found her voluntarily sitting on the naughty step with a book and some toys. All she understood was that was where we wanted her to sit.
The worst bit of advice I ever had was: “Ignore the bad behaviour and praise the good.” I think that has set up its own raft of issues, too long for this post. It also meant spending entire shopping trips adamantly and completely ignoring her and, yet again, feeling the disgusted stares of grandmas all across the town. (Grandmas always seem to have forgotten how hard parenting really is but then they didn’t have the supermarket sensory overload to deal with when theirs were young.)
At her first nursery school (age 3), after a week or so, her teacher said: “We do expect the children to do what they are told, first time they are told.” I am afraid I laughed and suggested she let me know when she’d figured out how.
A few weeks into her first year in proper school (age 5), her teacher said: “I take it she gets her own way all the time at home.”
What with the unkind glaring of the grandmas and the patronising criticism of the teachers down the years, I was fully convinced that the only problem my child had was her upbringing. I decided to get really strict with her.
If she came out of school with a bad report for the day there would be no treats, no TV, no anything else she could have fun with. It didn’t make any difference. So, I am truly ashamed to say, I threatened her with a wooden spoon across the hand if she got in trouble.
This had absolutely no effect on her behaviour at school but it left her a quivering, terrified wreck if the teacher said she was putting her on report (which would be how I would know she was in trouble).
I began to understand that she wasn’t capable of controlling her behaviour or modifying it (or even seeing that it wasn’t appropriate, in many cases). She was having other difficulties, too. She couldn’t hold a pencil properly and had difficulty writing. We tried all sorts of different ergonomic pencils and rubbery grip things but nothing helped.
When the behaviour and motor skills difficulties were becoming more apparent I asked for my girl to get some help. School told us to visit the doctor. The doctor told us he couldn’t do anything until school had been in touch. They refused saying doctor should be referring us. This buck-passing went on and on.
Eventually they admitted that the person who carries out the assessment of children can only see one pupil per school, per term. I was told my daughter would “never” be a serious enough case to qualify. There would always be another child with greater need.
Since then, we have moved to another country. One where public funds and strictly controlled budgets are not the decisive factors in medical care. There is no state health care system. Everyone pays. Within a year, my girl has been assessed and hopefully we will know soon how best to take care of her.
I felt terribly guilty about imposing such an enormous move on both my children but the silver lining on the cloud is that my lovely girl is finally, hopefully, going to be educated with understanding. That makes the upheaval well worth while.