Extraordinary Needs

A woman I consider my mentor once told me that her biggest regret was not spending more time with her other kids as she was always busy with her daughter with complex medical needs. Later that same week my 5 year old son sat in the back of my van and piped in “Mom, let’s have a meeting”. I asked him why he wanted to have a meeting and he said “So me and you and Dad can be together. I know, I will bring paper and pens and you bring snacks”.  I wept silently the rest of the way to our destination. My 5 year old had figured out one of the only ways to get his parents attention was to schedule a meeting.

I’d like to say after that exchange that things changed. But they didn’t, at least not right away. Our older son was entering a challenging part of his development – 2 years of increasingly out of control behavior with a bi-polar diagnosis about to follow. During those years he raged at home and lashed out at his brother. We had to teach Jeremy to go to his room and lock his door to escape the rage. Corbin became unsafe at school which led to numerous meetings and periods of staying at home. We were in crisis and my heart hurts to admit it but many times Jeremy and his needs took a back burner.

He struggled at school and had a lot of anxiety about being “good” (the teacher was trying to use rewards and punishments to ensure compliance). But I knew in my heart that he likely had ADHD and couldn’t sit still and pay attention. Adam and I sat and talked and I shared how I felt I was failing Jeremy. We agreed to some changes – namely that I would quit my part time job and work on getting Jeremy the help that he needed all the while still advocating for Corbin.

We re-referred him to the early intervention program I used to work for and that he was involved with until shortly after our adoption. During intake with a social worker I stressed that I was slowly losing my mind trying to navigate the system for both my boys. What followed was a series of blunders where we finally, after almost a year, got an assessment that confirmed the ADHD diagnosis and suggested possible learning issues in the future. We then worked with the school to create an IEP that would meet his needs. I had learned from the process with Corbin to let the school take the lead and to only get picky about things that were deal breakers for me. All the small things I just let go of.

At home I made an effort to take Jeremy out just him and I. We would take a trip to Tim Horton’s or to the indoor playground. I tried very hard to be present in these outings – putting my phone away and concentrating on my son. Jeremy was jealous that Corbin had support workers so we arranged for him to have his own friend to hang out with once every week or two. It was an added expense but worth it to see Jeremy so happy. We have no family in the same town as us, they are all a few hours drive away. So when Jeremy first came home to us one of my co2008-12-23-153629-workers offered to help out and take him once in a while if we needed a break. Well they quickly became “Aunt” and “Uncle” to Jeremy and he loved going to their house and being spoiled and allowed to do things I never would have let him – like drive the tractor.

Wait. It’s  time for some brutal honesty. As much as I tried to refocus on Jeremy, I was preoccupied with his brother. Things were so bad that even when I took Jeremy out I wasn’t fully present. And he knew. Kids know when they are not getting all of you, your authentic self. I would constantly check my phone, worried Corbin would be in crisis. I was exhausted physically and mentally. At night when I should have been reading to Jeremy I was instead flat out on my bed trying not to weep. My depression was at an all time high (or would it be low?? You know what I mean) and my anxiety was through the roof.

Why am I telling you this? Maybe part of it is that confessing feels good. But a more moral reason is I want to help. I want to tell you this from a piece I posted several years ago:

. . . it hit me. I could put every last little bit of energy I have left into “system” things like meetings, phone calls, letters, worry and advocacy OR I could be a mom. I could continue to be every last bit of my heart and soul into being my child’s: advocate, protector, defender, interpreter, pharmacist, behaviour therapist, security guard, expert mediator, speech therapist, occupational therapist, attachment expert, data analyst, symptom manager, crisis manager, dietician, fitness trainer, case manager, social worker, psychologist, service coordinator, teacher  OR I could be his MOM. In fact – to go a step beyond – I could be a mom to BOTH my boys. Don’t get me wrong. I’m not going to stop standing beside my son to make sure he gets what he needs. But I am trying to go about it a different way. If it’s been a rough day and I have a choice between eye therapy or cuddles and story time – guess which one wins?? If my kids want to play in a puddle and I am dragging them to the car because I need to get home to make a phone call about a service that I have been trying to unsuccessfully get for 8 years – guess which one wins now? If we get home from school with a plan to fly kites and the phone starts to ring and I know of I pick up the phone it’s going to be a long conversation with the case manager – guess which one wins??

So take it from a mom that has been there. Be there for your other kids. Find ways, no matter how small, to make them feel special. Pay attention to them more than you pay attention to your kids IEP and scheduling meetings. Read them bedtime stories and attend their school functions. They deserve an equal part of you even when you have another child with extraordinary needs

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This entry was posted in Disability, Finding a Balance, Parenting, Sorting it Out. Bookmark the permalink.

One Response to Extraordinary Needs

  1. Tina,as your Dad i am so very,very,very proud of you.At the same time, so sorry we could not be the grandparent’s/parents that could have been involved with these issue’s.I would just like to let you know,
    that you are so very, very strong to be able to do what you have done, and continue to do, as a parent. you are one in a million.you have become such a rich human being/parent/mother/wife/daughter,at a big cost to yourself.BUT I THINK THERE IS NOTHING YOU CANNOT DO.GO FORWARD WITH YOUR HEAD HELD HIGH, AND TAKE THE WORLD BY THE TAIL AND SWING IT AS FAST AS YOU CAN. GOD BLESS.

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