So everyone knows now of our struggles with Dayna not wanting to go to school, what we’ve gone through many mornings dealing with that and the issues dealing with the school system. That all still exists, but we are learning to live with it. I don’t want to say we’ve given up, but in a way we’ve just accepted the way things are. I’ve come to realize that is how we have dealt with most of the difficulties we’ve had learning to raise a child with autism. In this particular case, we hit a point where we had to prioritize and focus on life going forward. Dayna isn’t giving in. The school system has the upper hand. The burden of proof is on us, not them. After a while, we just had to say to ourselves that life for now will include Dayna waking us up and fighting us in the morning. That’s how you have to deal sometimes, you make adjustments and accept what is now the new normal.
That’s how we’ve learned to get by for years now. The decisions you make may not be ideal, but you make the decision that works and then deal with it. For instance, it is very hard to maintain two incomes with a severely autistic child. There are greater chances that they will miss school, there are more appointments, they may be sent home from school more often and there are limited choices for before or after school care. Even this past year with Dayna 14 years old, Deb attempting to go back to work part time proved more stressful than it was worth. Deb was missing work when Dayna was home, she was stuck in traffic one day and Kiley had to run to get Dayna off the bus and she had to leave work early more than once to pick Dayna when the school called. That’s so common that just this past Friday they called Deb to come get Dayna. It’s normal for Dayna, but Kiley is in middle school as well and I can’t think of one instance when she was sent home. The norm for Kiley is for it not to happen, but the norm for Dayna is that there is a good chance it could happen. You have to adjust and accept to problems like that, and in our case we did so by Deb always being available. We’ve survived on one income for 12 years now, sometimes by the skin of our teeth, but it works for all of us, especially Dayna.
Sometimes it’s not about a decision like income or careers. Sometimes is just accepting something that others wouldn’t even think about. Take the typical family dinner for instance. I used to hate the fact that we rarely have dinner together. It was something even Kiley brought up and asked us about once. The problem is Dayna does not like the smell or look of most food. Not only will she not sit with us, she sometimes will storm about the family room and yell at us, wanting us to clear the food off the table when the rest of us are eating. So to avoid upsetting her the rest of us either eat while she is working with her therapists or we all eat separately. You can’t help but feel you are not including her when you do that, but you also have to realize that including her would just upset her. I hope someday we can all sit together, but there is no way of knowing if that will happen. Not including Dayna is one of the hardest things I have to accept. It’s not just dinner, it could be family outings. If we want Kiley and Sean to experience a baseball game, we’ve learned we have to do it without Dayna. She doesn’t like the noise or commotion and will repeat “Go home?” throughout the day (we have learned this from experience!). It also happens when we are all invited over someone’s home as well. She doesn’t enjoy it and gets upset. As much as I may want my entire family together, there is the reality that doing so may not happen often and if we want the rest of the family to get out then we have to arrange for someone to stay with Dayna at home. The absolute worst instance when we had to decide not to include Dayna was my father’s funeral. We just couldn’t figure out a way to bring her. It was already a stressful time and we had limited time to get to Williamsburg and back. Dayna does not travel well and that would have added to the stress. Once there, we would not have anyone to be able to watch her during the mass and we couldn’t risk her being uncontrollable during it. I still question my decision to this day. But again, while it may not have been ideal, and it may not be what I wanted, I had to learn to accept it and move on.
On a lighter note, sometimes you adapt and accept to small things as well. Here’s one for instance….our bedrooms are FREEZING in the winter! Why….well we have a fireplace downstairs that we love using and it warms the house really well. The house has an open foyer to the upstairs, and all the bedrooms face that open foyer. Normally, the heat rises throughout the house keeping everything toasty. Here’s the problem….Dayna likes all the bedroom doors closed. Who knows why, but she stays on top of them and smiles ear to ear as she closes them all. You can open them, she will close them. Trust me, her ability to keep them closed will far outweigh anyone’s ability to keep them open. Determination has never been a problem for Dayna! So the warm air never makes it to the bedrooms. However the fireplace keeps the rest of the house so warm that the furnace stays off. The result, entering a bedroom is our house is often like entering the cooler at the liquor store where they keep the cases of beer cold. We adapt and say ‘whatever’….we have bigger issues to deal with….and we have sweatshirts…..and we like our fireplace (even Dayna).
Waking up at 4:30am, dealing with the screaming, it’s all just part of accepting the new status quo whether we like it or not. I’m writing this and looking out the window right now, a day of freezing rain and ice is ahead of us. It’s funny, autism is very much like the weather. It’s unpredictable and you can’t change it. You handle it, occasionally bitch about it, but in the end you adapt and learn to deal with it. And just like the bad days with weather, there are good days as well that you really enjoy.
So on that note I have to run…..I’m going to be stuck inside all day with this weather and I have a case of beer in my bedroom I’ve been dying to crack open…..