Uh…yes, it’s been a while. Sorry?
I struggle sometimes with this blog. I think many bloggers have dry spells or blocks of time where other things take up their time. For me I always get back to the people I’m writing about and the situations I find myself in. How much do I share? What business do I have talking about others? Who is reading this that might be hurt by something I say?
I find myself at a crossroads and at a difficult time right now. Life is changing and the next few months might be tough. In fact, I expect it to be very hard on a few of us. A period of change is fast approaching and I feel exhaustion already setting in before I even get started.
Both kids are graduating high school in a few months. One is headed off for university and the other…well… we’re not sure, exactly. He has reached the end of the line as far as “youth” goes and so the approach and transformation to adult begins.
It isn’t going well.
It’s scary for him.
Since the start of grade 12 Mathew has experienced an increase in anxiety and fear. All that he has known is about to change and it is scaring him. When he is anxious his behaviour nose dives and takes all of us with him.
Then Christmas came and went. For those familiar with this family, you know that is the time of year that I dread. I would boycott if possible but that hasn’t happened yet. We got through this year and it really wasn’t as bad as other years at all. It might be due to no decorations or fuss. There was no tree to trim, no gaily coloured decorations adorning the walls or nooks and crannies. Aside from a few strings of lights and a wreath that John hung out the front door, there was nothing to indicate Christmas was coming. The gifts were wrapped xmas eve and as per our norm, Mathew knew what 90% of them were. He made it to Christmas Eve night ~ midnight ~ before he opened the boxes and got down to the business of playing with his stuff.
The big help this year? School let out at noon on Christmas Eve! I didn’t mind it being late at all as it kept the kids busy. Busy kids can’t cause trouble! I worked xmas eve and got off at noon as well.
Back to my main point though, change is afoot and with it the chaos and confusion that makes life extra hard for Mathew. We have to call around and apply for all different kinds of programmes, disability notices and agencies to get Mathew the kind of aide and guidance he needs once high school is finished. There are 2 streams we need to approach for him…with him…. one being financial and the other being support. It means trips to the doctor, calling different agencies, seeing different people and filling out endless forms and going to interviews. Honestly, I have never recovered from the years of all that shit we’ve endured so far and this time it is worse.
This time it feels like I am sticking a knife in my heart. This time there is no turning back. We can’t hope or pretend that Mathew will suddenly pop up one morning, normal and raring to go as a regular adult. Each phone call we make and each piece of paper we fill out takes away one more bit of that life we had hoped he would have. Every day brings him closer to the reality of his life and takes him away from our dreams for him. It is so much harder to do than it sounds.
I have spent much of the last 6 months talking to Mathew about his future and what it may bring. It meant brining him down to reality and presenting more realistic options as to what the near future will bring him. We need to get a disability certificate issued for him and to have him assessed as an adult. Then we will see what, if any, assistance (both financial and support) he qualifies for.
We have done a bit already. And guess what? It looks like Mathew might have a gap year where once again he falls through the cracks. A lot of the programmes offered in this province start at age 19. Not 18. But he is going to graduate in June when he is 18. Someone forgot to think things through and the options to keep him busy until he is 19 are very few. Him, sitting at home for hours on end, by himself day after day is an option that makes me shudder with fear. Anyone would go nuts with that to look forward to. He is no different.
So, while we prepare to send our daughter away to University and deal with all the emotional stuff attached to that, we are also dealing with the work and stress of moving a disabled child into the next chapter of his life. To one of an adult. I am so excited and enthused for Kristen to head out into her next adventure. I can see her mindset slowly changing from a dependent child still at school to one who is eager to jump out of the next and make her way on her own. I am gonna miss that girl terribly. She is so ready though and I remember the excitement as I left “home” and took off for my adventure.
I am so not ready to jump into that ocean of forms/doctors/appointments etc, etc, etc. I do not want to talk about Mathew’s disabilities or abilities one more time. To try to describe Mathew to people who don’t know him. To try to get him what he needs while retaining our sense of family and privacy. There isn’t much privacy when filling out these forms and answering everyone’s questions. It has to be done but I hate all of it. If I believed something wonderful would emerge for Mathew from all of this, then maybe I would be more eager. The last 18 years of the very same shit got us almost nowhere and it took all of my energy. Now I have to scrape together some more for the next phase.
Not only that but our dreams as a couple and as parents had to shift. Hubby and I look around us and see other families with older teens and it is glaringly obvious that our life is not headed the way we thought it would. Other parents get that “coupledom” back ~ they can go out together for an evening, maybe even a weekend. They can pick up a hobby, meet friends on a schedule. Take a course. Reinvent themselves.
Not us. Mathew might be about to turn 18 but he is still very much a child. He can handle a day or so at home if there is food left for him that he can easily access. He will use the microwave to cook leftovers or prepare a frozen dinner but that is it. He goes from his room to the computer and that is it. He gets lonely and I get the calls. He doesn’t like being home alone in the dark and with winter it gets dark before I get home. Sometimes his mood swings send him down into an emotional tailspin and I get the calls. Sometimes I leave work early just to go be with him.
John and I can’t pick up and go anywhere together. Not even for an evening out, just the two of us. One of us always has to be handy to home or be at home, for Mathew. One of us also has to be ready to entertain Mathew and than means either hanging out in his room or taking him out to town. Mathew does have a buddy or two now but they visit sporadically at best.
What I mean to say is that I am Mathew’s life. I am his best friend and his buddy. His preference has always been to spend time with me rather than his father and so long as I’m around he doesn’t need/want his Dad. Dad likes to be busy and physically active. He is having a bit of a mid-life crisis and wants to be off doing things. And he does. Kristen is off doing her thing. Mathew and I are together. All. the. time.
This fall I spent a long time reconciling myself to this different future . I’m not looking for pity I am telling it like it is. Mathew had to adjust his dreams for his life and us, his parents, had to change ours. What kind of a mother and person would I be, dashing off to fulfill my dreams and abandoning my child ? I relinquished that right when I decided to have children. Life didn’t turn out the way any of us expected but you know what? It’s pretty good the way it is. Life without my kids wouldn’t be worth living so I’m happy we are all turning out okay.
It is great when Hubby joins us and hangs around. But he does not affect Mathew’s quality of life like I do. I am more of a homebody, movie-watcher, craft-doer, shopper than him and these are the things that Mathew enjoys as well. My worry is that this will cause John and I to grow apart as he can go and do the things we used to do as a couple. He can go and visit people with or without Mathew, and have a peaceful/pleasant visit. I go with Mathew and something happens to Mathew out there ~ when we are around family or other people we know he turns into a nightmare. The visit becomes unpleasant for me and for those around us. This last Christmas Eve, at a family get-together, I finally got up and went home. I left Mathew behind and I’m told his behaviour changed once I left and everyone enjoyed themselves. Lovely. That made me feel like a million bucks.
Everything is a work in progress and we muddle along without blueprints or how-to guides. We are all functioning adults and going about our work/school and life in a productive manner, so we’re doing something right.
Now it’s late and I am tired. I will be posting some summer pictures and little stories from here and there to update you with soon. Thank you for stopping by and not totally giving up on me!