I was reading a post today on one of the groups that I follow on Facebook and it was all centred around a mom who said she can’t do it anymore. She has been parenting her daughter with Cerebral Palsy for the last 10 years, and today she turned to a fellow group of parents to share her frustration, and sadness, and despair. I was to say the least shocked at the responses from some of the non parents on the site. This mom was basically burned at the stake for saying that enough was enough, and when she was defended by other parents, they too were attacked.
It is no secret that I suffer from depression. I have a signed letter and everything to certify that I am on the crazy train. Despite the fact that I try to make our life look happy and easy and fun, I really struggle some days to carry on. I tend to go and go and go and go and go, and then STOP. And it is very hard for me to start up again. There are tears and days of not wanting to get out of bed. I don’t want to answer emails, or make phone calls, or do anything. I can’t face having to arrange appointments, or work on adding content to Maclain’s communication device, or fill out forms for funding, or research a piece of equipment, or strategize on toilet training, or fight with the school, or investigate recreational programs, or try to find ways to fatten him up. And this list doesn’t even touch all the regular life stuff like cooking, cleaning, spending time with Chase and G, seeing friends, organizing birthday parties, going to baseball games, volunteering, helping other parents, personal grooming, working out, and so on and so on. At the end of the day, I figure out a way to pick it up and keep going. I dig deep and carry on because I love my family and I love my life. And as the years have passed, I have started to figure out what activities, therapies and programs are of value to Maclain, and what we can do without. It is not just the task that is hard, it is the emotional stuff that goes with it. Filling out applications that make you list your child’s diagnosis and medical history time and time again are emotionally exhausting. I can tell our story now without crying, but it doesn’t mean that it doesn’t rip at my heart every time the words leave my lips. I have also become more confident to tell therapists and professionals that I can’t do it all, and that we have to as a team, find strategies to make our goals realistic, and that if it we can’t find a way to make it easy, it probably won’t get done. I think that it is very easy for the people around us to forget that we are only human, and that we don’t know everything. Dropping off a communication device with me, with some programming instructions doesn’t make me a speech language pathologist.
I think that everyone gets to a point at some time in their life where they feel like they really can’t handle everything that they have to do. Now add to that the stress of caring for a child with a neurological disorder, and that point comes quicker and more often. When other people need a break, they are encouraged to do so. If you don’t like your job, think about a career change? If you have too many commitments, drop one or two? Maybe you don’t coach your kids hockey team this year, or you decide not to run for school council. But when a parent of a special needs kid wants to drop something, what do they drop? It is usually something that they are doing for themselves, because the guilt of giving up something pertaining to their child will tear them apart. I never like to see a parent who is at the end of their rope. But it is not for anyone to chastise them for their decision to step back, take a break, or give up. We don’t all have the strength in us to last the 10 rounds we need to win the fight. I would rather see a child get the love and attention they need and deserve, then to see a parent struggling to juggle everything and fail at it. The hair on the back of my neck stands up when I hear a doctor, or therapist say that they totally understand how we feel, but we just need to keep going. Sorry, but you could be the best, most supportive, most loving professional ever, but if you aren’t a special needs parent, you will never understand. You will never live with the inner struggle that we live with. We are so thankful for the amazing people that we have on team Maclain, and I know that none of them would ever, ever tell me that I was wrong for wanting to give up some days. Unfortunately, not all professionals are like that. and to them I say this. When I end up in a fight on a simple trip to get pizza because some guy parked in a handicapped spot? Does that happen to you when you go out to the corner store? Do you worry about whether or not the movies, restaurant, mall, hotel, etc, is accessible? And when it isn’t, do you jump on the computer to find out who you can call or email and complain to? Do you lose sleep worrying about whether or not your son is going to get his diaper changed at school, or spend all day sitting in his wheelchair? And then spend more time worrying because you have to find the time in the day to add that fight to your list? Do you fret about where you are going to find the money to get a new walker, or where to find winter boots to go over their AFO’s? Do you spend an hour crying in your car after a doctor appointment or after you get a recent report in the mail? Do you get anxiety attacks thinking about what happens when you aren’t around anymore?
A few years ago, I went to see a mother talk about a book she had written. It was about her life with her son, who had an undiagnosed condition. He had sadly passed away, but she bravely wrote about her experiences with her son. In the first five minutes of hearing her talk, I wanted to leave. She was reading a chapter she had written about giving up. They had decided to stop speech therapy because it wasn’t working, and they took him out of school because he wasn’t learning, and they stopped physical therapy because he wasn’t making gains. My hands were gripped so tightly that my nails were digging into my hand. I had to physically stop myself from jumping up and screaming at her that she was horrible for having done all those things. But as she went on to explain her decisions, I started to calm down. The days that he used to spend at school not learning anything, with an IEP that was never followed, were now spent at the zoo, hockey hall of fame, harbour front, the movies, doing crafts at home, experiencing life. Instead of struggling to find the right communication device, with a proper access point, they just found a way to interpret his needs and keep him happy, and it worked for them. All the stress and tears were gone, and they were communicating with him in their own way, and as long as the people close to him could understand, that was all that was needed. My fingers started to unravel themselves, and my blood pressure started to come down. I was no where near the point that she was at when I went to hear her talk, but over the years, that talk has resonated with me. She said that after her son passed away, she took alot of time to reflect on the decisions that she had made. Had she done the right thing to just give up after all the years that she had spent fighting for him, and trying all the therapies and buying all the equipment. She of course did not know he was going to pass away so young, but she said that she felt peace in her heart knowing that they last years of his life were happy years. That he was doing things that made him happy, and that gave their family a break from all the stress and pain of trying to keep up with futile attempts to change their situation. She spent months trying to find a way to get him to blow out the candles on his birthday cake all by himself, even going so far as to rig a hairdryer that he could turn on with a switch. When the big moment came, the switch didn’t work, he couldn’t eat the cake anyways, she was in tears from not making it work, and it almost ruined the birthday party. We special needs parents do this stuff to ourselves all the time. We don’t know any other way. So when we say that we just want to give up sometimes, think about all the events in our life that have led up to that point, and then decide if you want to tell us that we are bad parents for not having the energy anymore.
I still have plenty of fight left in me, and for now I will continue to do everything I can for Maclain to advance his knowledge and his functionality, but if the day comes when we have to give up some things because they are causing more harm than good, just do me a favour and keep your thoughts to yourself. Unless you want to come an join us at the zoo, or the hockey hall of fame.