Rocky road to diagnosis

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.

Sensory processing issues

(Photo credit: Wikipedia)

Bringing my baby home from hospital only highlighted how little I knew about infants. Something I had never heard of before was sensory processing issues or how to recognise them. I was however very aware of the following challenges we were encountering (and some still affect daily life).

Strong smells such as onions or fish cooking, perfume, deodorant or fresh air spray drove my tiny tot to distraction. Meltdown to tantrum in about 10 seconds. We had to keep her well away from these odours and we had to stop using any perfumed soaps, shampoos, deodorants or fabric conditioners. She would refuse to breastfeed if there was any small tinge of unnatural smell on or near my skin.

She would squirm and scream when her dear old grannie and great auntie tried to give her a hug. They bore powdery smells she was not familiar with and reacted badly to. Not to mention she never liked being held anyway.

Which brings us to physical contact. She didn’t really like being touched and she didn’t seek the comfort of cuddles. If she was being held the purpose was solely to breastfeed. Consequently only I could really hold her and even then, if not feeding, she insisted on being held with her back to me and her legs kicking outwards. Any limb restriction was violently refused (you can imagine how depressing my efforts to swaddle this sleepless newborn had been).

When I held her on my shoulder she turned her head out, never snuggling into me. At baby massage she was a screaming wreck 10 minutes into the session. At the time of writing she is eight years old and only just puts up with an occasional hug from her mother but remains rigid and doesn’t reciprocate. The only time she volunteers a cuddle is if she thinks it will provoke her little sister into a moment of jealousy.

Any physical contact is a danger zone for her and we have had no end of problems with teachers who couldn’t refrain from touching her and then complained that she had hit or kicked them afterwards. She use to have no control over that reaction. Now, her control mechanism is to avoid it at all costs.

This has led to her running around the classroom to keep one step ahead of the teacher who couldn’t keep her hands to herself. She is also avoiding sports and going into meltdown to prevent from having to take part.

She can’t bear the transition from hot to cold and hates to go outside into bad weather (I know exactly how she feels there!) Once she is out she is OK, it’s the thought of facing it that bothers her the most. Again, her method of coping is avoidance.

As a baby she hated the process of getting dressed after a bath and screamed the house down nightly. We still have sensory problems with clothes. Some fabrics she will not tolerate at all and other items might have a label that tickles and must be removed. She avoids clothes that go around her neck and prefers a loose or stretchy waist to a fixed band, such as on jeans,

Anything more than a few seconds of eye contact was hard for my newborn girl to cope with. She would turn her head away and squeak in protest. If you held her in a way that forced her gaze she would hit full meltdown fast.

As an infant she couldn’t stand the stimulation of the television, radio or music playing. It was not possible to vacuum the carpet without holding her (and she hated the restriction of our sling and refused to be worn).

She had a little bouncy chair but she couldn’t sit in it for more than a few minutes. I suspected it kinked her tummy in a way she found sore quite quickly.

She couldn’t stand the supermarket. I imagine the bright, flickering lights, piped music and the background chatter and noise of a busy shop bombarded her senses with way more than she could cope with. In the end, I sat in the car park breastfeeding her while Daddy got the groceries.

She hated having her hair washed and brushed and to this day we have a major issue with this. She grits her teeth and bears the washing but struggles with the brushing so much. She can only do the sides herself so the back gets quite tangly. She insists on keeping it long though I advised her short hair would be less tuggy to brush.

Teeth cleaning is another daily struggle. She is very sensitive to the taste of toothpaste and can only have it in her mouth for so long (weirdly, when I was pregnant with her, toothpaste made me puke daily). She rushes the brushing and won’t let me help any more.

I have read that motion sickness can be a symptom of sensory processing difficulties and she certainly gets very queasy in the car (though thankfully not yet sick).

She will often have a violent reaction to something she has eaten, or smelled, that will turn her stomach and make her retch, sometimes even vomit. This was at its worst as a toddler and happens much less often now.

She doesn’t like food with much of a texture so nuts, anything with seeds or “bits”, slimy things like onion and so on are rejected as is anything slightly spicy. I give her huge credit for being willing to try foods (even if she is predisposed to say she doesn’t like them) and even re-try food a few years later. Usually the result is the same negative as before, but I am proud of her for trying.

Fortunately, she likes just enough variety of vegetables and mum’s old fashioned home cooking that I don’t have to worry about her overall dietary needs. The younger daughter and Daddy are the picky ones here!

She can’t express it herself but I feel sure her sensory issues have been causing a lot of problems in school. She is anxious about being touched or physically jostled, the lights and constant noise are probably wearing her down fast and she is ending up in a meltdown situation.

She has, in this last year, developed a method of controlling this overload but it’s not good news. She is disassociating from her peers and the teachers, refusing to obey all instructions and locking herself mentally away some place she feels safe.

At the time of writing, she has been assessed as needing a specialised education and we are waiting for a place in a suitable school.

Developing motor skills in a dream

Crawling baby by David Černý (Photo credit: exfordy)

A clumsy, uncoordinated child, I had trouble learning to do things that required good balance. I also lacked confidence and was terrified of falling from a height (even a relatively small one).

Consequently, it seemed to take me forever to learn to ride a bicycle. I remember one long summer holiday deciding I was going to crack cycling if it meant practicing all day every day. I was scared to set off and couldn’t understand that momentum would bring balance.

Then one night I had a dream. I don’t remember any of the detail except that in this dream I was merrily riding a bike. My first thought when I awoke next morning was of jumping on my bicycle and seeing if it was really true. Could I really ride like in my dream.

And I could. I had learned to ride my bike in my sleep. My subconscious overcame the confidence problem by sending me a lovely dream.

I mention this only because it was thanks to this experience that I recognised the same thing happening to my special big girl, the day after her first birthday, when she learned to crawl.

After finally settling her for the evening, she slept for around two hours before waking suddenly in a panicky state. She was calling and screaming from her cot. When I got to her she clung to me, desperate to be lifted, then made it clear she was just as desperate to be put down on the floor.

She had never behaved like this and I wondered if she was ill in some way. I put her down and instantly she flopped over on her knees and scuttled off at a terrific pace before sitting and grinning at her achievement.

She had been sitting unaided for a few months but had made no clear attempt to get mobile or start crawling. She hadn’t even done the bum-shuffle.

From the reaction she showed and the expression on her face I know she dreamed she was crawling that night. And I knew it because she felt the same way I did about learning to cycle after so long.