Raising a child with special needs is demanding even in the best of circumstances. Add depression to the mix and things can get even more challenging. I have Major Depressive Disorder and I’m raising a son with severe autism. The depression adds a tricky layer to our family dynamic. We are not alone though. Parents of special needs kids are far more apt to develop depression than those of typical children. The thing is no one really talks about it.
I’ve scoured the internet trying to find other parents who struggle with depression while raising a special needs child and have found very little. Mostly statistics on studies done. Why is that? I’m guessing that it is because we are supposed to be super parents. People tell us all the time, “I don’t know how you do it.” Who wants to admit that there are days when we don’t “do it” well at all? There is so much pressure to get everything just right. The stakes are higher with our special kids.
I’m not saying that I’m depressed all the time. Far from it, but it is always there just waiting to find a weak moment to slip in and pull me down. Weak moments can be pretty often when dealing with Ry. There are all the sleepless nights because of Ry’s lack of sleep pattern which can wear the body down. There is also always the guilt of wishing I’d done more for him earlier on. The guilt of why this happened to him in the first place – was it something I did? This is true for most special needs parents. We all have those moments of doubt. We do the best we can and keep pushing forward. We have no other choice.
There are days when I don’t care that Ry won’t keep his pants on and I let him run around in just his pull up. There are days when I rely too heavily on his brother and sister to watch out for him while I take too long naps. There are days when I just can’t and we don’t work on his PECS (Picture Exchange Communication System) and I let him close himself up in his room to play alone so I don’t have to deal with him. Days when I have to muster the strength to do the most basic things for him like get him his drinks or feed him. It happens.
Then there are the days when I am totally on the ball. “Nope, son, your pants stay on!” His room gets cleaned, his sheets get changed, the cracker crumbs get swept up daily. Days when we work tirelessly on reinforcing his picture exchange. Times that we dance, play together with his magnet toys and trucks or watch videos together on his Kindle. Days when I can honestly say I am proud of my mommy skills.
Most days I’m somewhere in between though. Most days are spent trying to stay positive and again – do the best I can. I’m never perfect. Never a model mom by any stretch of the imagination. His room will get picked up, but the few cracker crumbs can wait until tomorrow. ‘Crap, I forgot to make him use the picture card that time.’ ‘I really don’t want to watch “Wheels on the Bus” in Chinese again, but ok. Just one more time.’
I know this inconsistency is not good for Ry, but I can’t help what I can’t help. The guilt sometimes fuels the depression even more. Even on the good days, the guilt can creep in and make me doubt myself as a good mother. I tell myself that this is the way life is for us and I shouldn’t feel guilt. I do the best I can every day. Some days are just better than others and that’s ok. He’s not being ruined.
One thing I can say is that Ry gives me the motivation to get up in the morning on the bad days. He gives me purpose to get dressed. He still needs to get to school. He may not get a bath every morning, but he’ll have on clean clothes and will be ready for the bus on time. I still get him to his therapy sessions even though I’d rather stay home. So those are small wins for me on those bad days. Weekends can be a whole different story, but we work with what we’ve got.
It’s disheartening that more parents aren’t sharing their experiences. That’s the whole reason I started this blog. Hoping that other people would find it and we could share together and not feel so isolated.
As usual I’m trying to focus on the good, take my meds, see my therapist – doing all those things I need to do to keep the black hole as far away as I can. Ry needs me. Paix and Aidan need me, although not in the same capacity. Being a special needs parent carries a lot with it that most people don’t think about. It is taxing and lonely and stressful and exhausting yet gives you some of the most unique moments of joy you never thought possible. Depression is a part of my life, but it doesn’t rule it. As long as that stays true, I think we’ll be ok.