I met with a group of moms recently all of whom have kids with varying special needs. One of the things we talked about was how isolating it can feel to be a special needs mom. I mean, being a parent is by far the hardest job out there even with a typical kid. As I’m writing this I have one baby in my lap sleeping and one crying because her sock is sticky and I just had to stop to wipe someone’s butt. Again. It’s enough to drive even the most type A mom towards the hot mess express. Being a parent is endless guess work and finger crossing just hoping you don’t screw them up too bad. Am I right? Let’s just put it out there: None of us know what we are doing!
When I was young and everyone was excited to get their college degrees and start a career, I remember feeling like it didn’t matter what my major was in because I just wanted to MOM. Mommin was my dream! I had all these plans. I had all these ideas of how my life would go and what my kids would be like. I was never going to need daycare. I was definitely going to be room mom. If Pinterest was a thing back then, oh man, my boards would have been filled with all the ways I was going to be this amazing and involved parent. I just couldn’t for the life of me understand how all these mothers were complaining about how hard life was. Ha, how I have changed!
And then life happens to you. I say happens because I didn’t plan for any of this and neither did you. Sure we planned to have kids, but THIS isn’t what I had imagined. When you get pregnant you start imagining. You imagine first birthdays, play dates, preschool, soccer games. You don’t imagine IEP meetings and melt downs that will blow the house down. You don’t imagine that something as small as drop off at school or daycare or brushing teeth will be a battle EVERY SINGLE DAY. See in the beginning, I thought this was all my fault. Mason was talking and reaching milestones so our struggles were mostly behavioral. Behavioral obviously means bad parenting right? Twenty year old me for sure thought the kid screaming on the floor at the grocery needed a little come to Jesus meeting. Logically I understood, that all this was beyond me. But emotionally I questioned myself and I still do, on a regular basis. If it’s me, I can fix that. I’m his mom and I should be able to fix this. I should be able to make it better. And I can’t. All of those plans and ideas I had on how our lives would go are different now. I quit working to be home with my kids, in part because one of them needed me here. I didn’t plan for this level of needing me. I’m a social person by nature and I second guess meeting new friends because I may have to cancel last minute depending on how our day is unfolding. Or I just don’t want to have to apologize for a meltdown and explain the behaviors that aren’t socially acceptable. People stare. They make comments about “well if he was my kid” or “well if you didn’t baby him.” It makes me laugh when I think about it because these people have NO idea how exhausting this is. The words hurt though, because this isn’t what I planned for. Its not just bad behavior at the doctors office, it’s a constant battle in my mind trying to decide if this something he can control or is this caused by disability? I’m constantly walking a line between consequences for actions and comforting the struggles. It’s isolating and we stay home a lot. It’s easier to stay home in our controlled environment a lot of days, but it’s still lonely as hell. I didn’t plan for loneliness. Sometimes I see an adult in the middle of the day after being home alone for days and it’s like word vomit. I just can’t get enough of that adult interaction, even if it is in the Mcdonalds drive thru. Yes, I’m not perfect and sometimes my kids get Mcdonalds because those .79 hamburgers are worth my sanity at the end of the day. The poor drive thru people listening to my rants… the real MVPs. I didn’t plan for isolation. And more than that, I didn’t plan that I would be CHOOSING isolation over the unexpected of going out in public.
On a normal day, we keep on trucking. I make room for anxiety in our day. We have written schedules and routines, we review them over and over. We have built in breaks when we need them and go to methods of diffusing a meltdown before we get to the red zone. I mean this is normal for us. I’m not sure what life is like with a typical kid, because this is all I know. Even with my other kids, we use the same tools because that is what works for our family. But sometimes, I see other kids his age doing things he isn’t doing. Sometimes I compare my five year old current development to where Mason was at that point and it’s like someone hits me with a truck. For a second I let myself feel sad for all the things we planned for and have lost due to special needs. All the friends I’m not seeing, all the places we have to avoid, all the struggles at family parties, missing out on play dates and birthday parties, no Easter bunny visits. Just today we saw someone new at the pediatrician and she asked a totally normal question about when Mason has friends over and it stung. He doesn’t have friends over. No one calls or rings the doorbell. His friends only come over when I set up play dates in advance. But no one is asking him over. My heart crumbles every time I really think about this, because I had planned for him to have friends in and out of the house, sleep overs and water gun fights. It hurts, because I know he wants all those things. In these moments, I embrace that feeling of sadness and I let myself feel it. Like really feel it. It comes in waves and I let them crash in on our “normal,” and I mourn for the things that aren’t. Mourning your expectations of life, is normal. Mourning all the things you thought would have been, is OK. It doesn’t mean you love your kid any less, it means you are human. It’s OK to be sad over the things that you planned for, that just aren’t what you expected.
There are so many of us. There are so many parents fighting for their kids every single day. We are all blaming ourselves. We are all feeling alone. We are all mourning things we wished for. I put it out there in the beginning but it’s the truth, none of us know what we are doing, but we aren’t alone. There is no right way to be a special needs parent. It’s OK to feel sad sometimes, as long as you pick yourself back up and keep fighting for your kiddo. They say it takes a village to raise a child and I think that’s true. Finding your village is the hard part, but it’s worth it. Your village doesn’t have to be big, but it should be filled with parents who understand that sometimes, you just need a moment to let the waves crash in.
Are you looking for a village? Join us over in the Mom Spot. We saved you a seat.