we keep learning

May 2, 2015

family life

My youngest boy is now 9.

He has spent the past 7 months going to occupational therapy (OT). The therapist has been focusing on his core strength, and he has been doing really well. The tantrums at home have ceased. He is still doing lots of sport and activity and that has complemented the OT.

However, the last OT session ended with a massive tantrum. At the time, we didn’t know that it would be the last OT session, so that wasn’t the reason for the tantrum. The therapist said it was time to end the session, and the boy didn’t want it to finish. The therapist got a little insight into how tricky this boy can be.

During the fortnightly sessions she would give me advice about how to manage him. I didn’t tell her what I do for a living. She didn’t tell me anything I didn’t already know, but I nodded in agreement. And then she got to see just how big this little fella can be. A tantrum of enormous proportions.

When he got into the car, he looked at me sheepishly. “I’m sorry Mumma”. I replied “that was huge, you’re not in trouble mate, but you don’t always get what you want in life and you don’t get it by having a big outburst”.  He was full of remorse. I gave him lots of hugs. It was a cathartic moment for him, I think he scared himself.

School has been interesting this year. His teacher, who taught him in kindergarten, had some idea of how she would approach teaching him and started off well enough. But she hadn’t read his psychology and OT reports and thus wasn’t fully appraised of just how dogmatic he can be. There was a regular butting of heads until she read his reports. One day, the class was asked to write five sentences. This kid has dysgraphia. He can’t get ideas out of his head and struggles with the physical act of writing. When she checked on him 45 minutes later, he had managed to scrawl “Five sentences are crap.” She said to him “I’m glad you spelt everything correctly”, and she got some idea of how hard this was for him.

He has been struggling socially too. The teacher said that he was spending a lot of time on his own or transitioning through various groups of children. He wouldn’t even eat his lunch with the class. This is probably a hangover from last year, where there were some children in his class who would antagonise him mercilessly until he exploded with rage. The teacher has worked on creating emotional safety for him so that he feels he can join in with the class. It also helped that one of his most persistent friends, who is also a little quirky and tolerates my boys’ belligerence, has been moved into the same class. His friend is super chilled but is assertive enough not to be pushed around – I’m grateful for this friend because he is a great role model.

I sat with all of this information for a while, the social stuff, the dysgraphia. Parents who have children with challenges are constantly guessing and searching. Searching for something that will get them over the next bump. I worry about him going to high school. The OT ended and I was glad for that in a way. The young OT was brilliant with the physical stuff, clearly her strength, but she couldn’t give me any ideas for the dysgraphia. She said that she was going to connect with the school but she never did.

He is tutored once per week. The tutor is kind and caring and she works with him on words and sentences. I think that’s helping. She calls him ‘beautiful’ and ‘gorgeous’ and he shimmies in the glow of gratuitous praise. Sometimes I wonder if it is going too slowly, but I have to quell my impatience. I could work with my son on words and sentences but he won’t take it from me, so I have to hand things over to other people and pay them handsomely for their trouble. He gets to be successful in another place with another person, and it frees me up to be mum. He is an angel for the tutor – it’s good to send your kids into environments where they have the opportunity to wear a halo.

I purchased a computer programme called The Secret Agent Society” (SAS). This product has been produced in Australia for children with autism. It is designed to teach children how to read social cues. It was expensive at $400, but it was so worth it. He loves it, and it’s helping. One afternoon, he was getting upset with the computer. The game has some physical aides, little cards with strategies on how to calm down. We went through the cards, and he chose a card which asks the child to replace those unhelpful thoughts with helpful ones. Sceptical, I asked him to identify his unhelpful thoughts, and he did. Then I asked him to think of some more helpful thoughts, and he did. And he was calm and ready to move on. Just like that. This is a strategy that we use a lot now, and I think that it has become automatic for him now. Self regulation – yes!

He is learning ways of coping. One day whilst walking home from school, we were talking about something that would normally upset him. He said “Mum I can’t worry anymore, I ask myself three things – am I going to die, will anyone get hurt, and will it ruin someone’s life? If the answer is ‘no’ then I don’t worry”. He has always surprised me with his insight.

Mornings have become difficult again. It takes him so long to get ready in the morning. The other morning, when faced with the sun shining in through a window, cold feet, a pair of socks to put on, and breakfast to eat, he said “Mum, I don’t know where to start”. Too much sensory information to sift through. He needs prompting constantly – one task at a time. But at least now he can talk about what he is struggling with, rather than going into meltdown mode.

I booked him in to see a different OT at a different centre. They have a good reputation for dealing with fine motor skills and attention difficulties. Another assessment. He has wobbly thumbs, like rubber. He can’t hold a pencil properly because his thumb won’t stay firm. His fingertips are rubbery too. No feedback. He has to tense his wrist, elbow, shoulder, neck to write. It’s exhausting for him. We’ll get the report in a few weeks, and then book him in for more therapy.

Once, we get the writing sorted out, I’ll see where he is socially, and have a look around for appropriate supports. With each assessment, he finds relief. There is a big aha, and we know a little bit more about how he is made and what we need to do to support him. He has come a long way in a year, and I’m glad that I didn’t accept the clinical psychologist’s assessment that nothing much could be done for him.

 

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About hakea

groupworker, parent educator, therapist, mother of three boys.

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5 Comments on “we keep learning”

  1. Hazel M. Wheeler Says:

    Hello there,

    I think we are in similar spaces, yet you are a year or so ahead of us. We recently have been walking a path that is leading us out of the darkness of our assumptions (esp regarding parenting beliefs) and into light– which is sometimes illuminating, and sometimes makes me squint so it does not overwhelm. Its helping us to parent *our* son, and I’m learning so much.

    Your recount of that step forward/step back/reflect/rest sort of dance we do as parents is so true. We have moments when we are hard on our kids, hard on ourselves and moments where we see huge progress and are glad for it and also a little relieved and sad that something which might come easily to a typical child is such a huge accomplishment for our own sweet, special little person.

    I’ve learned that everything I know about raising and working with typical children– only a small bit of it works with an NT kid. That non-NT parents may not understand my response to some things: a softer punishment than another kid might have received, because I know that in order for my son to change his behavior, he needs more goal-oriented guidance. We are, with some success, practicing finding ‘third choices’ when possible (instead of either/or, so as to initiate thinking instead of reacting). Kiddo is beginning to advocate for himself and his needs in the classroom while having to learn that making irresponsible choices means that he loses his abilities to make choices in that moment.

    I have spent countless hours working with the teacher, counselor, immersing myself in the resources his doctor (who genuinely cares about these kids and has made helping ADD/ADHD kids and the study of attention his life’s work)…. and somehow, in all of this, I see many blessings. We’ve discovered Kiddo is just as wildly intelligent as we thought he was and we have learned that due to slow processing, he was painfully in conflict with our expectations. How can such a bright person take 10 minutes to get out of the car? It’s laughable now, but really, before when we thought he was just being stubborn… oh, the pain of it.

    Okay, this is long enough: just wanted to say, as a mom who also can’t help her kid with that pesky schoolwork and who will be ‘bad’ by having her son do summer tutoring to help him for next year… all I can say is, we all have a lot to learn about the different needs of different children and the sort of guidance each individual child needs. So I’m glad you are sharing your journey with us. You are not alone. 🙂

    Reply

    • Hazel M. Wheeler Says:

      Sorry, I meant that “only some of it works with an NNT kid”.. not that neurotypical kids don’t have their own struggles, just that some of the NNT stuff is really off the page and in a different book entirely!

      Reply

    • hakea Says:

      Many thanks Hazel.

      It’s hard work. This boy’s teacher, who has herself a child on the autism spectrum, says that every day is ‘groundhog day’. The steps backwards and forwards always vary.

      You are right about needing to treat them differently. This is something that the teachers at the school I work at are grappling with. These children’s lack of impulse control means they have not a care for the usually-dreaded yellow and red level system at school. And so, the teachers are left wondering what they can do to make the system ‘fair’ for everyone. I know that the answer lies in having a system based on Kohlberg’s theory of moral development but this is a big leap for school teachers who are locked into a dualistic system of reward or punishment.

      Best wishes to you.

      Reply

  2. michaelwatsonvt Says:

    I am struck by your courage, or rather by the courage both of you demonstrate in the face of truly difficult circumstances. I wonder about society’s insistence on such a narrow definition of neurotypical, and the costs of this. Still, reading your post I am buoyed by the closeness and obvious love shared between the tow of you, and find myself wanting to know how you are, together, able to nurture and protect your bond in the face of so much hardship. It is good to hear about your mutual love and affection, and to witness it, even from afar.

    Reply

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