One of my articles has been re-posted on Her View From Home
Take a look, leave a comment
One of my articles has been re-posted on Her View From Home
Take a look, leave a comment
There are 3 things that I feel helped Corbin and our family the most when he was in early years of elementary school. One was Camp Winston ; then there was Occupational Therapy and then respite. According to the Family Respite Services website
We are a Windsor-Essex community organization that works with families caring for children under the age of eighteen who have intellectual, physical and mental health disabilities. We facilitate the provision of respite services that contribute to:
We have always felt it important that respite be viewed more as a way of connecting Corbin to his community than a break for us. While needing a break was very real we also stressed to workers that Corbin also needed a break from his family. No kid should spend 24/7 with their parents.
I believe respite started around his 7th birthday. When we didn’t qualify for any other programs, Family Respite Services stepped in with some mental health dollars and we had a couple of hours per week when he did something fun with his worker.We had a wonderful coordinator, Jane, who stayed with us for over 10 years. She was always working to make sure Corbin had a good match in his worker and she was there for me when for so many years we could not figure out Corbin’s diagnosis thus we couldn’t get appropriate services. I can’t count the amount of times I sobbed over the phone and guiltily shared that I didn’t know how much longer our family could go on without the right help. There was nothing she could do to help us – but she listened and I will always be grateful for her in our lives.
Over the years we had several respite workers, all who were amazing in their own way. The following are just a few of them. Sarah was known for playing Playmobil with him – they would spend hours together just setting the scene for a war or storming the castle. This time with Corbin was so important for him because he was struggling so much at school and he had difficulty knowing how to play with toys.
Becky was great for taking Corbin out and doing activities in the community or visiting her cat. Even after she moved on she stepped in and helped us out when Corbin was going through his mental health crisis.
Michelle came along just in time for Corbin’s greatest struggles. She endured rages and a complete inability to function out in the world. She was so calm no matter what was thrown at her (figuratively and literally) and I often wondered what kept bringing her back when things were so bleak.
All of these ladies saved my sanity again and again. During their time with Corbin I could spend more time with my younger son Jeremy, run errands or hide in my room with a coffee and a good book. Sometimes we were able to arrange for care for our younger son and my husband and I would take the Respite time to go out for coffee and visit the bookstore. One glorious time we even went to see a movie.
It’s hard trying to convey how much respite helped our family. Without the reprieve and without the opportunities for Corbin to socialize and be successful we wouldn’t be where we are today.
Thank you Family Respite Services
Thanks for the concern – the following is an example of how I feel when depression overwhelms me – I am NOT feeling this way now.
Words my mental illness plants in my brain. They sneak in under the cover of dark, rearing their ugly heads when I least expect it. Defences down, I am bowled over by the intensity and severity of the words. I do my best to fight. I do positive self talk and affirmations. I stay away from sad movies and TV. I seek out my husband who counteracts the force of the words.
But sometimes, sometimes I can’t fight. They overwhelm me, those words.
They tell me I can no longer do my job – that I am missing things with the families I help and I have made some major mistakes. I find myself compulsively checking my notes and second guessing what I have and haven’t done. Before home visits I sit in my car, taking deep breaths and trying to will the panic attack away. My heart races, my palms are sweaty, it feels like an elephant is sitting on my chest. I push down the feelings of inadequacy and will myself to be calm and receptive to the family I am there to help.
They tell me I am a horrible mother. That I have missed some major things with my children and I have failed them as a mother. They tell me that the boys would be better without me, a mother who is a burden and source of stress and anxiety. I am aware of how much I am yelling at them and that serves to throw me in deeper into my depression.
They tell me I am a lousy spouse. That I have no interest in anything and have trouble connecting on a personal level. My caring husband wants to help me but I don’t know what to tell him, how to help me. Which then leads to me further berating myself for not being able to share with him.
Those words, they tell me my family is better off without me. That I am nothing. How can they miss me when I am nothing? I try to tell myself that I am loved and wanted but the words are too strong. I have trouble getting out of bed. I watch mindless TV for hours and sleep is my new best friend. Lots and lots of sleep. And lets not forget the eating – anything and everything. The more unhealthy the better.
And sometimes. Sometimes things get so bad I fear for my safety. I struggle to try to explain to others what is going on with me in that moment. I just know I feel so bad that I am thinking of killing myself.
They take my mental health away. They almost take my life.
Diabetes is kicking my ass
I know I have type 2 so the onus is on me to eat healthier and exercise more. I also have central sleep apnea which doesn’t always respond to my CPAP machine and often leaves me exhausted all day. Who feels like excercising when you have had no sleep? I also have Polycystic Ovaries which wreaks havoc on my hormones and leads to weight gain. Which then makes the Diabetes worse.
I also have depression – at times crippling depression and anxiety that make it hard for me to get out of bed in the morning let alone exercise on purpose. I use food as my emotional crutch. Feel sad. Eat. Feel scared. Eat. Feel frustrated. Eat. And so on.
I have read all the scary stuff that Diabetes can bring to the table. Loss of sight, loss of
limbs, death. It is terrifying, and yet when presented with a butter tart I scarf it down. When it comes to sugar I have no self control. But I am trying. I made a gradual switch from Cola to Diet Cola (don’t lecture about the harm sweetners do, I can only take one step at a time) and now I am focusing on drinking less cola each day. I am eating more greek yoghurt and other healthy options.
But I still eat carbohydrates way too much.
I’m a food addict and it needs to stop.
A few months ago I mentioned that I gave a 1.5 hour talk at a conference. It was at the Ontario Association for Infant and Child Development (OAICD) and the topic was Our Journey: Finding Hope and Courage within Family-Centred Care.
The audience was small but perfect for my first solo presentation at a conference. I received the feedback from the conference in late November but was swamped with work and home stuff and didn’t get a chance to post.
Here is what people had to say:
I’m hoping this is just the start to many more speaking engagements.
I stumbled across a new site – Her View From Home – and if you click on the link it will take you to an article I wrote for the site. Please comment and share – the more unique pageviews for the next 30 days the more I get paid. Thanks in advance 🙂
There are times where, as the parent of a child with a disability, you will be told to fight for what your child needs. Us “special needs moms” – we tell each other “fight for him, you know him best” and “the squeaky wheel gets the grease”. People get worked up hearing other parent’s stories. At times I too have believed this way of thinking and engaged in my fair share of fights. Last week I read a piece that spoke of being a Mama Warrior for your child with special needs and it just seared my heart. I genuinely felt very saddened by the notion that as a whole, it is thought that parents of kids with a disability need to suit up and prepare for battle over everything their child might need.
The definition of a warrior is “a brave or experienced soldier or fighter”. Since when is combat looked at as a positive thing? Don’t we often look for ways to end war and bring world peace? Do people usually seek out ways to fight others? If you wouldn’t tell members of your family to “fight” for things they want at their job, why do we tell it to parents just trying to have their child’s needs met? When you look for a fight what are you going to find most times? A fight. Stop looking for one. Believe me when I say there is enough negativity in the world without you adding to it.
Just think about your day to day life. Are people coaxing you, urging you to “fight” with your boss or co-workers? Have a difference of opinion? Well attack those people before they have a chance to attack you. Another co-worker has his idea accepted by top brass and you disagree? Well by all means engage in an intense verbal argument designed to beat down your co-worker and have you be victorious.
I admit – I have filled the role of Mama Warrior many many times. I went to meetings pissed off and just looking for a fight. But what I quickly found was that it did no one any good. Everyone was so busy protecting themselves from being attacked and throwing barbs at “the enemy” that no one could actually problem solve and come up with a plan that everyone could get behind. I would usually leave those meetings still mad and upset. These days, I am not a fighter for my son, instead I am:
Look for common ground instead of looking for a fight. Instead of focusing on the negative, try to highlight the positive. Ask yourself what is the end result you are looking for. If it’s getting everyone hostile then by all means pick a fight. I know that some people are going to say “ya but if I don’t fight nothing ever happens” and I would ask: Have you ever tried? Have you gone into a meeting well prepared but calm and stayed that way no matter what was launched at you? Maybe I am being idealistic but I can say these strategies have worked for me time and time again. I just think the world would be a lot better if there were fewer fights.