Even before your child is diagnosed with autism the first thing anyone wants you to do is fill out forms. What date did he do that or when did he start that. Ask anyone who’s had a few kids, by the time the 3rd one comes around you’re not quite as strict with writing down every milestone. It’s a sad true fact, there’s often less photos and less baby book entries. It’s not cause you love them less, it’s just cause you have so many kids! It’s busy!
So whenever I’m faced with the daunting task of filling out forms I feel like I’m back in high school avoiding doing homework at any cost. I just really hate it. So much. But I also know it’s a necessary evil. We were part of a study for a few years through UBC and every time they came for a visit and assessment I would get a stack of forms to fill out. No exaggeration, there were usually 10-15 different questionnaires, and assessment forms. They gave me usually about 90 minutes to get them done. Ugh can you say writers cramp?
The forms have gotten less and less over the last few years thank goodness. But currently I’m about 2 weeks late handing in a form to my social worker. And she’s hounding me and I’m avoiding her like the good high school rebel I am. I’ll get it done. I always do-eventually. I think mostly I just get tired of being reminded of how far behind my kiddo was at any given age.
Anyhow off I go, putting off filling the form in for just a little longer, at least until this evening anyway.
I found autism daddy’s blog quite a while ago now and from the first moment I started reading I felt like we were kindred spirits. Seriously. It’s like this guy was in my brain. His son is so similar to Parker it’s kinda crazy! I have met other parents locally who have children in the spectrum, but they are all on the higher functioning end. Our struggles are very different so it can be hard to relate to them. So when I read posts like the one Autism Daddy wrote today I want to yell from the mountain tops “SOMEONE ELSE GETS IT!!!” and then I kinda wanna stalk him and go hang out with him, because I can’t imagine how incredible it would be to sit down over coffee with someone going through so much of the same things.
So because I can’t put into words any better than he has done I will share his post from today called “Why autism supermoms make me feel bad”
Last night Parker stayed home for the night as it is spring break. So today being a beautiful spring day we decided to head out for “family adventure day” We packed up the jeep and headed to the river for a fire and fresh air.
We had a great afternoon, Jackson felled some trees, Rachel chilled in the sunshine and Parker played in the jeep. We spent a couple hours enjoying nature and then in true B.C. fashion it began to rain. So we packed up and headed home. But not all of us. And this is the part that’s easy to forget. In moments when the 5 of us are together and we’ve had a great day, it’s easy to forget about the choice we made almost 2 years ago. The choice we made that had us today, like many other days, heading across town to drop Parker off at “his house” before the rest of us headed home.
In those moments the guilt comes flooding back at full force. The weight of our decision like a boulder crashing through our great day. I hate how sad he sometimes gets and especially when the tears start rolling down his face. I hate that our decision is the cause for his sadness. All I want to do is grab him and head straight for home and never look back. But it’s also easy to forget why we are here in the first place. Easy to forget the stress, frustration and helplessness that lead us to our decision in the first place.
Making that decision was by far the scariest and hardest thing we’ve done so far in our lives. But I try not to forget why we made it. I do not want to live with regret for not having done what we needed to be the best version of our family we could be.
I love weekends. Not because I’m off very weekend. I work in health care. There are no weekends. But because it’s the time of week when all my kiddos are under one roof. When Parker first transitioned to living at the resource we waited a few months to have him home for the night. We wanted to make it less confusing during an already stressful and tumultuous time. I still don’t know if we transitioned him well or not. We had no guidance and no one to talk to about our situation because we don’t know anyone else who has gone through it. But that’s a whole different post. But during those first months even though I saw Parker every day, when I was at home it always felt like something was missing. I always thought I heard him and was always still “on” all the time. It felt very unnatural to sit still and not be checking on him every few minutes.
Once he started coming home for sleepovers, I finally felt more connected and at ease. It’s certainly not a natural thing having your child living somewhere other than you are, so it’s no big surprise to me looking back at it hindsight, that I felt so off center.
So it’s my happiest times when I can look around the house and see all 3 kiddos doing their thing, because that’s how it should be in a perfect typical world.
It’s always so great to meet other parents that “get it” Parents who understand the torture of a day of stimming, or a day of watching the same movie over and over and over again. By chance today at work I was chatting with a lady that comes in to do housekeeping for one of our residents. I’ve chatted a lot in the past to her, but today it came up in conversation that her son has Autism along with his DS. Her son is grown now at 22 years old while my son is 12 but she’s been where I am. We talked about school issues (ie sensitive butt-hurt principals), family issues ( family who don’t try to interact with our affected kiddos and how hurtful it is) We also discussed how hard it is to find good people to work with our kids, and how when you do get a really good one you never, ever want to see them go! I swear I would make someone sign a contract in blood to never move, have a baby, change careers and so on until Parker is 18! I raved about one of Parker’s workers and how lucky we were to have her. ( She is really great) It was just great to talk to someone else in the “trenches” so to speak. The feeling of camaraderie kept me going for the rest of my work day.
Then right after work I went to pick Parker up and got the news that our amazing worker had just put in her two weeks notice today. I was gutted. Scared. Sad. Worried. the whole gamut of emotions. I immediately started worrying about how it was going to affect Parker and in turn affect all of us. Could we possibly get lucky enough to find someone new who cared about Parker the same way? Someone who would actively advocate for him. Someone who is basically a rock star?
I definitely could feel my stress level shooting through the roof. I was plunged back in time to those first days when Parker moved to the resource. The guilt, anxiety all coming back to me. But I don’t want to live like that. Focusing on the negative isn’t going to help. I have to think that maybe our rock star was only meant to be in our lives for a certain amount of time. Change isn’t always a bad thing- I repeat, change is not always a bad thing. So I’m going to keep my fingers crossed and hope that the universe is kind enough to shoot another star our way.