Most parents never feel like they are doing enough for their children. It is just the way it is. It starts early on, and it never stops. I didn’t breastfeed long enough. I didn’t read to him enough. The birthday party wasn’t fun enough. I didn’t push them enough to do their homework. I should have made them eat more veggies.
The list goes on and on.
Now, add to that a child with special needs, and the anxiety about doing enough for your child increases ten fold. Remember, there is already a ton of guilt hanging around from our child’s diagnosis.
Why are we so hard on ourselves?
When Maclain was diagnosed I went ballistic in my search for things to help him. I figured that if I threw enough you know what against the wall something had to stick. I was worried that time was not on our side, and that those early years were so precious. It was all consuming. I travelled from Picton to Michigan, and everywhere in between. Our schedule was filled with Medek, OT, PT, CE, SLP, AVT, Hydrotherapy. We had in house, out of house, private pay and public funded programs. I bought every stander/walker/seating system/bottle/sippy cup/floor wedge and any other gadget I could find. I read book after book after book, and changed strategies for feeding, sleeping, drinking, stretching. And worst of all, I always compared myself to other parents out there who were running the race along side me to find a way to fix their children. I would feel defeated and depressed as I quickly determined that their kids seemed to be making more gains. What was I doing wrong? Despite everything I was doing, I felt that it was never enough. People would comment on how well Maclain was doing, and would mention the gains they could see. I would smile slightly and nod in agreement, while I said in my head that they were just being nice, and he really wasn’t making many gains. I could not get past my quest to do more, so I was oblivious to the great things that Maclain was doing. I started to run out of energy, money, postitivity, time, and hope. Maclain wasn’t walking, or sitting, or getting more head control. I had failed him. I constantly lost sleep thinking that I had made the wrong decisions for the therapies I chose, and I had picked the wrong equipment. I worried non stop that I did not read to him enough, expose him to enough language, or spend enough time putting him on his tummy. I struggled to keep up with all the homework that the therapists gave us to do in our “spare” time. I lived like this for almost 5 years.
I am not sure when or how it happened, but at some point, I started to realize that enough was enough. I was being too hard on myself. My son was flourishing in his own way, and it was because of all of what I had done for him. I finally allowed myself to say “Yep, I am a good mom, I am doing ok, I am doing enough and my son IS making gains” I think it is because I stopped comparing him to other kids, and started to look back at how far we had come. I took time to stop and see the things he was learning and doing. No, he isn’t sitting, or walking, or feeding himself. No, he hasn’t made a ton of gains in his physical functionality. He is however doing things the docs said he would never do. And he is a happy and much loved little boy. I began to understand that there are so many factors that come in to play when a child has a disability. Causation, age at which the insult happened, specific type of genetic disorder, other health issues, seizures, chromosonal abnormalities. No two kids are alike. My son happens to have pretty severe damage to his deep brain. It is something that for now we cannot change, and it may be a reason why he will never get the functional gains I hope he gets. This is not my fault, and I cannot beat myself up over the fact that no matter what we have tried, he still can’t sit or walk. It also doesn’t mean that we will ever give up, but my goals for him have changed, and other things have taken more of a priority. It is all part of a process that I have never been a part of before. I have started to figure out that going to the movies, out for dinner, to the zoo, visiting the cottage, making cookies, and hanging in the hot tub are all really important activities, and that while they are not therapy, they are not a waste of time. They are a part of being a family, of having a child, and of living life. It is ok to spend an hour on the swings at the park, instead of an hour at a treatment centre, and I don’t have to feel that I am cheating Maclain out of getting therapy.
I had lunch with an amazing mom last week. She is in such a tough place emotionally because of a recent diagnosis for her daughter. We spent alot of time talking about guilt, and that feeling of not doing enough. She compared herself to another mom who she feels does way more. I was quick to point out that you cannot compare. You can only do what you can for your child. Everyone is so different in their financial status, emotional state, therapy beliefs, goals for their children, and energy levels. If I compared myself to Dana, one of my besties ever, I would be forever depressed! She has boundless energy, enthusiam, positivity, and a fantastic young body that I swear is run by the energizer bunny, oh and she has a teaching background to boot! I simply do not have all of that, but I make do with what I do have. I reminded this mom over lunch that she needs to think about all of the gains that her daughter has made. She said that it was because of the great therapists that her daughter goes to. I said, take some credit for that. You get up every day, get dressed, make phone calls, arrange appts, drive your daughter everywhere so she can participate in therapy and recreational activites. You also have a husband, a house, a job and you have another child who also needs your love and attention. I wanted her to know that she is amazing, and to be proud of all the things she is doing for her daughter. I could see myself in her, the way I was just a short time ago,
If any of you special needs parents out there are reading this, I want to say this to you. Not because I have to, but because I believe it with all my heart.
You are to be praised. Your child loves you and they are happy and content because of all you do. They are making gains because of you. You are not only doing enough, you are in most cases doing way more than enough. You should be proud. You should take credit for the battles you have taken on, whether you feel you have won them or lost them. Give yourself a break. Don’t feel bad because you let your child watch too much tv while they stood in their stander so you could make dinner and put on a load of laundry. You didn’t cause their disabilities, and you can’t fix it. You can just do your best, as you know it to be, with the information you have available. You are the best parents your child could ask for.
“In the hopes of reaching the moon men fail to see the flowers that blossom at their feet.”
― Albert Schweitzer