Understanding

The Day He Was Born
The Day He Was Born

For the first time in the past two and a half years since my health deteriorated, a medical professional understood what it was like for me to be a parent to Jacob with all his unique needs. It was an amazing feeling that finally someone got what it was like to be me. That someone was a Paediatric Psychiatrist on Jacob’s care team. His dual specialties in Paediatric Medicine and Psychiatry meant he had enough knowledge to understand both parts of the equation. We had been referred to Child & Youth Mental Services mid December last year because Jacob used to get into dark moods; sometimes even expressing a desire to do away with his life. At 6 years old, he probably didn’t even understand what that meant. But it was enough to cause me panic and put out a call for help. Although we were first seen early this year, it has taken all of this time to complete the assessment process, which by the way did not involve them talking to Jacob about his state of mind.

Just as it seemed like we were about to start the intervention program, I got told that they had had a senior level review and decided we needed to undergo a “complex case review” which involved a comprehensive study of all of Jacob’s health issues as well as mine and to determine the best way forward. They tried to reassure me that it was a positive decision. But  I was devastated because it meant further delay in someone finally talking to Jacob and ended up bursting into tears at the meeting which happened about ten days ago. I said I came to them for help and we were again being shuffled from pillar to post. That it had taken nine and a half months to get to this stage and now they wanted to review things yet again. That I was tired of explaining the case history to yet another new person. That I was desperate for help. Although it was not intentional, the crying and the impassioned plea seemed to have had an effect. The complex case review was scheduled for yesterday and I was promised immediate feedback which was the reason for the meeting today.

And not only did they finally understand what I had to contend with, but they also understood that all their standard text book approaches for teaching me how to parent Jacob wasn’t going to be much help to me. The original approach had been to advocate a “super nanny” discipline regimen. Now they understood that not only could I not lift or carry Jacob back to the “naughty chair” each time it was required, but that I couldn’t even handle the stress of watching him protest against being disciplined. The solution they have come up with was for Jacob and I to work with a senior psychologist who I had previously been acquainted with. I was very happy with the prospect because she facilitated the Incredible Years parenting program I had attended earlier this year and I had a good rapport with her. For the first time in a long time I feel that some one is in my corner helping me fight my battle. I had fought this battle on my own because Jacob’s dad would not admit to seeing any of the behaviours that concerned me. The Psychiatrist who had met him during a previous meeting understood that this was because Jacob’s dad had Aspie tendencies himself and not because I was being a paranoid mum.

Attending the meeting today was another clinician, a registered nurse who was supposed to have carried out the original intervention before the decision to review Jacob’s case was made. It was clear she still did not get me. But having one person who had influence understand was enough for me. I took my victories where I could and this was a big one. I am happy.
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5 Comments Add yours

  1. One person can truly make all the difference. And, I was thinking this morning how important it is to recognize each other as individuals. We are each a unique “one” and we suffer greatly when others try to push us into standard, textbook, sterotypical norms. Good luck to you.

    1. You are so right. It is almost as if being “seen” or recognised validates you as a person even if only for that moment. That you do exist with all of that uniqueness. Thank you.

  2. Madhawa says:

    I had quite a lot of caching up to do on your blog. I covered from end of Oct to end of Sept one go like watching a TV serial I one go in the wrong order. After reading this one, which made me realize that I’ve seen only the tip of the ice burg of the fight you are putting up for Jacob, I also realised your life is yet balanced and flow with love, fun and education. This is so commendable.

    1. Thanks Madhawa.
      Yes, it is more balanced than it has ever been. The challenges are unique, yet so are the solutions I need to seek. The fight to advocate for Jacob is ongoing and at every level. But it is easier to do when I have light in my life like I do now…

      1. Madhawa says:

        Lovely comment: “light in my life”. He’d love to hear this. May the light prevail in your life!

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