Dear Special Needs Parent

Original Blog Post on July 12, 2016
Dear Special Needs Parent, I see you in the grocery store, at the doctor’s office, and at the park. I see the smiles that hide the tears. I see the tired look you try to hide. I hear the little sigh you let out when another mom talks about ‘date night’ or a milestone their child has reached. How do I see and hear all of this? I am a special needs mom, a single parent, a homeschooling mom, and so much more.
I know how hard it is to get up at the crack of dawn because your kid is already up and calling for you, even though they didn’t fall asleep until late. I know how hard it is to divide your attention between the kids, the chores, and all that has to be done. Much less finding time to do things for yourself like shower.
Honestly, I can’t remember the last ‘date night’ I’ve had or even the last time I was away from my kids for a night. (Maybe when the 3 year old was born?) I know that when you try to plan an outing it drains you because of all the things you have to be prepared for. You are exhausted by the time you get everything and everyone packed and ready.
Things that were once fun can still be fun but they are oh so exhausting now days. We have our good days when nobody has a melt down (or maybe just a couple of melt downs for the day), nobody wets the bed, and everyone eats what you made for dinner.
Then we have the bad days. The days when everything causes a meltdown, from the French Toast you make every Tuesday to keep things on a simple routine, to the thunder they thought they heard, or the little brother who is stuck on singing Twinkle, Twinkle Little Star (which was big brother’s favorite song yesterday but is irritating him today). Sigh, I know.
Then we have the really bad days were we just want to go back to bed. The days when you have done 3 loads of laundry before 6 am. When you have showered your 13 year old 4 times before 7am and stripped his room (and the bathroom) and completely disinfected and sanitized it for the 3rd day in a row. The days when he has forgotten/refuses to do anything for himself and calls you every bad name he can think of and then some that you can’t and don’t want to understand. I’ve been there. Sometimes these phases last a day or two or sometimes a week or two.
I can remember a few years ago when I had to clean my son’s room. It was a horrible mess. I grabbed rubber gloves and trash bags. I went to his room and opened the window. I filled those bags and started tossing them out the window because it was so nasty and I just couldn’t bear the thought of cleaning the stuff again just to have him repeat this scene again in a day or two. I was about 3 weeks from my due date with our 8th child. While cleaning I started throwing up because it was so bad. I ended up in the hospital for 3 days, at one point they thought I would be delivering the baby early. This was a week before Christmas and we had already planned a party for friends and family. The timing couldn’t have been worse. The party was cancelled and all last minute Christmas shopping went undone. But we made it through that and you will make it through whatever it is that you are going through right now too. (A very healthy baby boy was born 2 weeks later.)
I have my kids 24/7 with only a slight reprieve two times a week (when he feels like coming or something else doesn’t come up in his schedule) for maybe 2 hours a time (which was scheduled to be 5 hours each time but he never makes it that long). I can’t leave because something always happens. Sometimes I go to my bedroom or sit outside but the kids usually wander away and end up with me so I really have almost no ‘Me time’.
I know the brave front you put on when you are out and about. I know the fear when the kid next to you wipes their snotty nose on their hand and then goes to play with your kid. I know that if my kid catches whatever that is that life will be miserable for the next week or two. Not too mention the fact that it will eventually spread through the house and I’ll end up sick trying to tend to 6 kids by myself too. Yep, I know.
I also know that we need to be there for each other. We need to be a support system for each other. Whether by joining blogs or Facebook groups. If someone offers to help then let them. They can do dishes, wash laundry or just sit with the kids while you nap. Maybe when you the kids get comfortable you can even sneak away to do the grocery shopping by yourself.
Don’t keep trying to do it by yourself as you will just crash and burn. Trust me, I know.
If you are a friend or neighbor, maybe a parent or sibling of someone who has a special needs child please know that they do need you and they need your support. I can’t tell you how much it means just to chat for a minute on Messenger or a couple of texts when I am having a hard day. Let me tell you that I will never turn down food, especially ready to eat food. When someone shows up unexpectedly at the door with an armload of pizzas it is a wonderful feeling to know they were thinking about you.
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One thought on “Dear Special Needs Parent

  1. Pingback: He marches to the beat of his own drum – Kirby's Korner Blog

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