April 4, 2016

When Autism Makes You Prisoners

Our lives are different.

Even though I'm a stay-at-home mom/freelancer, I can't simply pack up the kids and go out.

We are trapped in the house, prisoners of autism.



There's no doing a quick errand, a long errand, even going to the park, playdate or story time when I'm alone with the kids. Walks around the block aren't possible. We have to stay in the house, doors locked, because that is where M2 is safest.

She's autistic and a runner. This means that if she gets it into her head, she takes off running. Disappears in the blink of an eye to anywhere and everywhere. Running in front of a speeding car won't faze her. Coming back when I call her won't illicit any response at all, she doesn't even turn around to look where I am. She can't tell someone who she is or where she lives. She won't even go near them, she'll keep running. With her, this isn't the usual toddler running away to be naughty, testing mommy to see if she's paying attention. It's something else entirely, something dangerous and frightening. 



If I go out alone with the kid and M2 runs, I have to make a choice. Do I chase her and leave baby B? Or do I stay with baby B and hope she comes back? I can't do both because I have to be able to pick up M2 when I get to her, she is going to kick, scream and fight. I also have to be able to weave in and out of people and tight spaces quickly to get to her, something a stroller or cart won't allow. It's an impossible choice that leaves one child in an unsafe situation. It's a choice I refuse to make because no matter what I choose, one of my babies is at risk. So we do what is safe. I don't go out with them alone. Ever.


When we go out, there has to be a dedicated, responsible adult to be with M2. Watching, waiting, ready to grab her if she darts in front of a car, runs through a parking lot, takes off through a store, tears through the neighborhood while we're going inside or heading to the car, races out the door while I try to bring baby B or the shopping inside. To complicate matters, trying to take her hand can send her immediately off running. She hates to have her hands touched, unless it's her idea.

Even when we are home, someone must be watching M2 constantly to keep her safe. 


Danger doesn't enter into her mind, she climbs and jumps from anything. Locks don't stop her for long, she figures them out or breaks them. Not one lock has withstood her. Should something look fun outside, she'll bolt out the door.


Having to watch her constantly makes getting any other work done very difficult. On bad days, I can't do anything. On good, I must stop frequently to check her (there's no way she's staying in the same room with me, she wouldn't think of it).

For us, having an aide for M2 vital to living "normal" lives. 


A personal care assistant comes in two days a week while A is at work so I can get housework done, knowing M2 is safe. We can go out of the house, on walks, to the store, to the park -- where ever. As long as it's during the 4 hours the aide is here. If there isn't an aide I trust or A available, we don't go. After the aide leaves for the day, we are home bound.

Times when someone else is around to go with us, we still have to factor in where it is we're going. Will it be too crowded? Too loud? Can M2 run off and put herself in danger too easily? Should the answer to any of those be yes, we don't go. Can we leave easily? Can we keep eyes on and be near M2 constantly? If there's a no in there, we stay home. Will we still be able to enjoy ourselves, or will we just be chasing her constantly to keep her safe? Basically, will it be worth it? If it's not -- you guessed it -- we don't go.

So I plan ahead. 


Each week is arranged around when we have an aide and when A has off. I prioritize what needs to be done, what must be done and what is actually possible. Errands are done when the aide or A is with us. When there are any activities, even if it's one that's usually for just mom and the kids, I'll have another adult with me. It's sometimes weird or awkward, but we do what we have to do. We evaluate each activity, each location, each invitation, carefully. We're not a "do it on a whim" family. Autism doesn't allow for that.


At this point, we're used to it. It is our life now. You'll never see me outside alone with the kids, unless it's in our 6-foot-tall-wooden-fence-with-no-footholds-and-extra-locks yard. We do what we have to do. We make it work.

It's A's and my job to keep both our kids safe. 


Even if I have to adjust our lives to make it happen, that's exactly what we'll do. After all, there's no one I'd rather be stuck in the house with then my family.

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32 comments:

  1. I can't even imagine what that's like. Sorry to hear about your struggles.

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  2. Be strong. You are a voice to those with Autism and those who are trying to understand. You have great strength.

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  3. That's terrifying. It may be hard and lonely but you have to do what is safest for your family. Stay strong.

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  4. God gave you this because he knows you can handle it. Your love for your child will always be your greatest strength.

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  5. Hang in there. Everything will be alright and Moms can really multi -task up to the nth time. Just stay cool. :)

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  6. My heart goes out to you. What a challenge you have on your hands and it is obviously a difficult road. Blessings to you as you travel it.

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  7. OMG. This was like reading about my daughter 4-5 years ago. She is 7 now and still has less danger awareness than her peers but the constant eloping is over. I so feel your pain and know your struggle. It's heartbreaking, overwhelming, terrifying and isolating. It's so hard to explain to other people why we can't do things like typical families. But it does get better! Does your daughter do ABA therapy? It truly is a life changer. Thank you for writing this. Please keep being an amazing mom and advocate for you little girl. :)

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    1. We haven't done ABA therapy, I keep going back to it but am not sure that it'd be a good fit. I need to look into it more and should probably just get the ball rolling to try it.

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  8. I totally feel your struggles. I have two special needs children still at home. Our once tiny autistic son is now 15 and in and out of hospitals - he is in at the moment. Even if where we want to go is a fantastically fun place - getting him to leave his little corner of the world (our home) is a painful task and often not possible. Even if we are able to get him into the car there is no guarantee when we arrive at our destination that we will get him out of the car. We do not have personal care assistance - I so wish we did. Connecticut doesn't seem to have nearly the resources for autistic children as other states. And at 15 and taller than me - we can never get someone to watch him. No date nights, no events for our younger child - at least not together. So yes, we are prisoners too. But what I worry about most is him being a prisoner to himself. But it doesn't seem to bother him in the least...

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    1. Send me an email (writereditormom at gmail.com) I have some resources that might be help you in getting an aide. Hang in there!!

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  9. Bless you Hun! I've witnessed how hard autism is, a couple of my friends have autistic children. It sounds like you really have got it tough and I hope that as she gets older things will start to get easier for you all!xx

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  10. You are such a strong woman, and I'm glad you have the patience for all that. I see and hear stories of parents who don't even care and let their children go off and do unsafe things and not even care. I couldn't imagine a life like that, but you're making it work. I'm so proud of you.

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  11. It is good to have help with this. I learned some more about autism today.

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  12. I can very much relate to your post. My daughter is on the spectrum as well, everyhting needs to be planned around her. I need to think/be 5 moves ahead and think of all the things that may happen while we are out so most of the time we just stay home as well. It's nice to know we are not alone in this.

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  13. You have to be proud of yourself! it takes a lot of courage to live through the days living with autism around you, ive heard that planning reduces a lot of worries and makes the children adapt easily to daily chores, and you seem to be doing good so keep up the good work! <3

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  14. Elizabeth O.4/06/2016 2:11 AM

    That's tough, I feel for you, as a mother of twins I needed to constantly make sure that the both of my girls are safe. I know it's nothing like what you're experiencing right now. I do hope it gets better so that you wouldn't feel so sheltered or anything like that and your other child also gets to see the outside.

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  15. Wow, I can see the necessity for an aide and for planning everything out. Without routine things could get very scary, very fast!!

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  16. I can feel for you, I am a Psychology grad and I know how challenging it would be. There would be a lot of reading materials to help you out. meanwhile, just be strong because I know this is also physically challenging

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  17. Keep strong and be strong. Thanks for sharing your own story. Really a good read for me.

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  18. Feel sorry to your struggles. Everything is gonna be alright.

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  19. Oh feel sorry for that. Be strong always! Everything is gonna be okay soon.

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  20. I'm so sorry to hear this, keep strong for her

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  21. I know it can be very hard and you are doing an amazing job!

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  22. Oh that must be so difficult. I'm glad you have an aid to help you at least a little. Hopefully things will get easier as the baby gets older.

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  23. One of my little cousin was a runner when he was a small child. He didn't have Autism though but he would have to be kept in close range. He would unlock doors and just go off running. We lived in an apartment complex and often time there were cars coming and going. But it's nothing compared to what you are going through. I wish I knew what to say.

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  24. I can't imagine what you are going thru. Stay strong thru it.

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  25. wow, that's really challenging. I'm sorry to hear. You're a mom, and I'm sure you are very strong and inspiring woman.

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  26. Big hugs. I have a cousin who is autistic and his mom said she often feels trapped and helpless :/

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  27. This sounds like such a tough situation but I think you're doing what you can and you're doing a great job! You're keeping your children safe. I hope that this changes for you soon :)

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  28. as a mother, it is our duty. we have to always remember that everything happens for a reason and this things and have a very special child makes you extra stronger and braver than anyone else

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  29. God has a reason and purpose. He is in control just keep the faith. Stay strong!

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Thanks for taking the time to leave a comment. As a busy mom, I'm not always able to respond to each one, though I read and appreciate them all.