I’m leaving my dream home, partly due to autism. We have been nestled in this gorgeous oasis for almost thirteen years. Am I sad? Well, I have decided instead to choose happiness while living life with autism.
It’s time for us to downsize and get ready for retirement. Four of our five children have moved out, and we no longer need a six-bedroom, five-bathroom house. Plus I’m tired of cleaning those bathrooms…well, I don’t REALLY clean them all regularly.
I have no clue where we are going to end up living. But I know I want to be content whether it is a trailer, bungalow or small, lovely oasis.
My husband Vance and I are in a unique situation. We can’t just pick a house we like and buy it. We have a grown son with autism who has some very unusual needs. Our house needs to match the current needs he has, and also some future ones that could come up, as Kyle ages.
When Kyle hits his bipolar spells each month, he is home for a week to ten days with his staff, so we are hoping to gain more privacy for them and us.
We’ve seen many homes we like, but they don’t suit Kyle.
Kyle will pound his walls during his bipolar spell. My mother-in-law who lives about 200 meters next to our home, has heard Kyle banging his walls from her doorstep. So privacy is a must.
We also need to think about what happens if Kyle outlives us, and who will live with him when we are gone. So, we want to choose a home that also has separate living quarters from ours, in case one of our children moves in with their family, to care for Kyle.
- Click here: My Brother’s Keeper to learn more about what it was like for our kids to grow up with an older brother who had autism.
It’s really odd to talk about the future – twenty to thirty years from now. But Vance and I have owned four houses, and we are ready to move to our last home. So, we want to get it right this time.
This is going to sound silly to you, but I have a strong desire to walk into my house and throw my car keys on a kitchen counter. You may be wondering why something so simple is important to me?
We hide almost EVERYTHING, or it goes missing.
I want to leave my vitamins out, leave my cell phone on the table, and have a bowl of fruit on the island. We also cannot eat a meal without having to grab all the food and run into the pantry with it, when Kyle comes down the stairs. He will take a whole pot of mash potatoes up to his room. Once he gets his hands on an item, there’s no getting it back. His anxiety causes adrenaline to turn him into the Incredible Hulk.
We live in a gorgeous home, but lack the freedom to do the small things that make a house a home. I don’t want to sound like a victim – we really aren’t – it’s just the facts.
But that may be changing, and I am excited. But I’m not only delighted for Vance and me, but I’m also thrilled for Kyle. Our goal is to have a completely separate space for Kyle, to ease his anxiety, and give him the freedom to not fail in his own home.
When Kyle breaks our things, he feels terrible. But there’s a monster that takes over his body and Kyle can’t control him. The Incredible Hulk is angry and anxious and sees red at the drop of a hat. When the green monster leaves, Kyle is left feeling guilty about what just happened.
We have come to the point where we realize this may be our dream home, but it’s not Kyle’s dream home. He needs a place where he can be calm and free from anxiety. A place where he doesn’t feel he is failing daily.
Living in a magazine-worthy home is not all it’s cracked up to be when there’s no freedom to just live.
Relax. Breath. Unwind. Rest.
We have realized that we will be more relaxed in something much simpler, especially if it means Kyle can have peace, and say goodbye to the Incredible Hulk.
Although we are going to be leaving the place where we raised our five kids and made many wonderful memories, we are going to say hello to building a new world for Kyle so he can have a life of freedom and peace.
Choose happiness while living life with autism.
You and I both dream of having beautiful things and I DO have a life filled with beauty. But my idea of a beautiful life may be different than yours.
If you are living in a trailer right now with healthy children and a loving husband you have a beautiful life. You may go for a drive one day and pull up to my home and think, “Wow, I wish I had that life.”
That used to be me. I wished for your life.
I wanted your trailer, your healthy kids and your loving husband. Well…I wanted my own kids to be healthy, my own husband to be loving, and a home that wasn’t laden with stress from morning till night.
Eventually, God gave me the loving husband and helped our kids gain back their health. But he left us with autism. We didn’t have a life of freedom, and we were stuck in our home, not being able to go anywhere due to autism.
So God gave us an oasis to spend ninety percent of our time in.
Since Kyle now has staff from 8am – 8pm most days, we can now have separate living quarters, and we will care for him at night.
I am excited to see what God has in store for us. Life is about to change. Kyle’s world will become larger in ways, and he will have more freedom.
Yesterday we met with a builder to explore the possibility of building. As we started talking about the hardships of life, he shared these words of wisdom with us:
“Sometimes you have to have really awful days to appreciate the good ones.”
We have been through some tragic and terrible years with Kyle. I couldn’t even describe them in writing, to do it justice. Leaving our dream home is a minor little blimp on our timeline. Kyle almost had one foot in the grave three years ago. Our life was filled with sadness at the time.
Today our son is healthy, mostly happy, and slowly getting better month by month.
We have learned to appreciate the good days Kyle has. They probably wouldn’t be good days to you, but they are fantastic to us. When one of his staff stands in his kitchen and shares that Kyle wore his clothes all day – when he was out – we all cheer! When they say he ate three meals in the day, we get excited. If they tell us, he said a new word or phrase we are beyond ecstatic!
Kyle’s staff celebrates with us – his good days, are their good days also!
These are their greatest rewards when working in this field. But our home makes it difficult for Kyle’s staff to do their job to the best of their ability. There are days Kyle can’t get out of the house because he has to go past the kitchen and his brain get’s stuck on food.
Kyle needs a home without places that cause him to get stuck. He needs an oasis. If Kyle is living in peace, we all are living in peace.
Right now we are very thankful for all the answered prayers in Kyle’s life. We are so blessed and grateful that God has seen Kyle’s needs and met them in so many lovely ways. We know he already has our next move all planned out and believe God always does what’s best for Kyle.
Maybe your oasis doesn’t feel like one, and you need a place of peace too. Pray today and ask God to guide you to a place of peace and quiet. He cares about your situation and wants to carry your weary soul and give you a place to be sheltered from worry and strife.
The Lord is good, a refuge in time of trouble. He cares for those who trust in him. – Nahum 1:7
You know what they say, “Home is where you can throw your keys down” Well maybe that’s not quite right, but we’re hoping that’s how it’s going to be for Kyle and us.
Even though we are leaving our dream home, we want to choose happiness while living life with autism.💗
Your article blessed my day . I see similarities in you autism experience and mine (my sweet Matt is 17) . . it’s good to see my life isn’t so abnormal . .
I am delighted to hear of other autism mom’s who can relate. I guess mine and your normal is different from most people’s normal. But what’s that saying…”normal is just a setting on a dryer.” 🙂 Thank you, for stopping by my blog💕
My house had a locking pantry and chest freezer . . now all food I buy is fair game as soon as I leave for work. .
That’s so frustrating! I can completely sympathize with you. It’s very hard to make ends meet when food is gone in a flash!
Yes, but my greater concern is his health/weight
Your not alone there, we have went through the same. At one point Kyle had lost eighty pounds. But he has gained it back. You sound like a wonderful mother!
Awe, thank you! In appealing his SSI I am becoming more aware of all he needs . . . it’s all become so normal that I didn’t realize. . ..
He is 6’5″ and 350 lbs .. But that will change soon
Wow, that’s incredible! What a big teenager he is!
Yes, very big
Wouldn’t trade him for a barrel of monkeys tho!!
Lol glad he’s a keeper!