Do you have staff?
How do you handle so many special needs?
Are you exhausted?
I received these questions recently and this post is going to share the nitty gritty of our home. A home that probably looks quite a bit like any other home….with 7,845 kids. A home with an often exhausted mama (because all mamas are tired), a laundry pile that has been sighted by NASA from space and a Costco register display that resembles the national debt clock.
We spend a lot of our days taxiing, feeding, bathing, negotiating, and threatening future adults. Our tiny humans push us to the limits of patience but also gives us all the feels when we tuck them in at night. I’ve learned a lot from parenting; like poop doesn’t easily go down the drain and licking the dog won’t hurt them. I find myself arguing about basic hygiene, pants and whether the crust should be on the sandwich. If you throw in special needs parenting, I’m adding adaptive equipment, tubing, wound care, IEPs, loads of appointments, etc., but the underlying premise of parenting stays the same. As parents, our entire parenting goal has been whittled down to trying to put ourselves out of the business of full-time parenting. Yes, my husband and I are preparing our children to eventually launch from our home. This is why we rejoice when one can wipe their own hiney, and another gets up on Saturday morning and gets their own cereal and watches cartoons.
Here are some things we’ve learned-
Pick your battles = Let me tell you a story. Middle son went through a phase where I could not comb his hair… he acted like a comb was a rusty hacksaw coming at his head. He also hated showers. This line of thinking only works in the summer, when we have unlimited access to chlorinated pools. We knew that a two-hour shower battle could not occur every night. So we compromised and told him that he needed to shower every three days. What didn’t help was when my oldest teenage daughter interjected and said that they learned at school that members of George Washington’s army had a law that forbade bathing more than once a year. So in the spirit of family, we also compromised with our daughter and have implemented colonial dress code and dating etiquette.
Dog Years =Parent years. My age is 42, but in parent years I am now 74. Let me explain. My eyesight is failing, I don’t notice the cat my youngest daughters smuggles in her backpack for show ‘n’ tell. I am feeding my kids dinner at 4:00 in the vain attempt they will go to bed early. I have mastered selective hearing, gone nose blind and I talk a lot about medical procedures. Last night I ate popcorn for dinner. Now I’ve forgotten what I was writing about…74.
Everything is Sticky– just roll with it. I’ve stopped trying to identify the origin and I buy wipes…all the wipes in the big Costco boxes. I organize as best I can and occasionally do the dishes dressed like Cinderella…makes life fun and I threaten to drop the kids at school wearing the gown if they don’t clean their rooms.
Suggestions– When you have a special needs child(ren), you will receive many suggestions. Put bluntly, people will have many things that you should try in the hopes that your child will be ‘normal’ or ‘neurotypical’. Let me give you an example. Israel has Spina Bifida and he has no feeling from the upper waist down. Despite this level of impairment, he is not slowed down. He is super fast in his wheelchair and he can climb and transfer easily. His therapists started giving us braces..like tons of braces, in an attempt to help him walk. They were amazing and exuberant and we sat sideline and cheered it all on. What soon became apparent, was that ‘trying to walk’ or ‘stand upright’ was actually slowing him down. He could not get around on the floor in the back brace, and the full leg braces dragged his body to a standstill. It was also prescribed that we drive to a town 55 miles away twice a week for therapies. We came to a crashing halt.
We have learned that with each of our special needs children, we come to a point where we have to choose what we believe to be the best choices for our child. Therapists and physicians have a tough job and do their best to give us options for our children, but at the end of the day, we have to look at the full picture. Our son did not need to ‘learn to walk’ because it actually would slow him down. I sat with my husband and we realized that our son had been caged in an orphanage for almost 5 years. What he needed most, was the freedom to crawl around in our yard and get dirty. He needed to learn to be a child, not drive to countless therapies and appointments. So we scaled it back. We kept every medical doctor appointment and only braced his feet so that he would not get heel drop. Then we learned to look away when he did flips on the trampoline or found him bungee corded to the back of his brother’s ride-on truck. And one day I looked and saw that what he did in our yard and in our home, could never be replicated in a therapists office. He was learning to be a child, a boy, and those were not things learned in an office.
You Will Learn that You Can’t Fix Everything– I will never forget the day I wished the earth would open and swallow me. I was sitting in a doctor’s office and she was explaining the depths of my son’s disabilities and I was arguing. I was going toe to toe with the doctor and trying to explain away the results, the tests, the opinions. Suddenly I became silent and was dropped by the look of concern and even pity from this doctor and the therapist. My heart broke wide and I realized that despite all the amazing care, the teachers and therapists that were working with my child, he would not live the life I dreamed for him. And I stumbled to the parking lot and ugly sobbed in my car, because I was changed. But it made me stronger because I was okay. That moment did not kill me, and my child was still living and breathing. It changed my perspective and I realized that my naivete had just been shattered, and I had not only survived, but I was tougher. And here’s where I tell you that some things need to be broken, so they can heal stronger.
Family Hacks – I watch and learn from the best. I’ll end this post with my favorite large family hacks.
Each of my children has a cup that has their name on it. This is the only cup they can use and they are responsible to rinse it out and keep it hanging on the fridge. I used Command strips to hang the cups. We also use paper plates, because there are days it is about survival.
Each child has a basket and a place for their basket. When we do laundry, the clothes go into the correct basket and each child is responsible to put away their own clothing.
I have a centralized closet just for medical supplies and equipment.
What are your parenting survival tips because us moms have to stick together…beans and all?