“I was recently talking with another mom who has a child with mental health issues. While talking she used the term “emotionally held hostage.” Those three words struck a cord with me because so often in the special needs, disability, and mental health worlds it can feel like we are being held hostage. By our children, spouses, parents, and even ourselves through our own illnesses.”
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Special Needs Sibling
Fear About Being Admitted to a Psych Unit
“Mental health is a scary issue for many people. There is so much stigma attached to many of the diagnoses. Adults frequently are afraid that they will lose their jobs if anyone finds out. This leads to not getting help, and not being able to talk to anyone about their mental health isolating them from the world. Which in turn, can lead to more mental health issues like depression and anxiety. ”
Read more. . .
Being The Sibling of a Special Needs Child is Hard
“Being a sibling of a child with a disability or special needs is hard.
For a child, it can be embarrassing. Their sibling does things no one else does. The sibling may not understand the finer points of socialization, causing embarrassing situations. ”
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Medical Issues And Our Survival
“Five years ago we moved from Alaska to Washington. Prior to doing so, our child, whose primary diagnosis is Autism, had spent time in a Children’s Psychiatric Hospital for 5 weeks.”
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Chicago Med Highlights Child Residential Care
“They are told that in order to get the help their son needs they will have to give up custody to force their state into giving him care.
This is what they end up having to do. They have to legally “abandon” their child and Social services take over.”
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Should My Daughter Take Responsibility For Her Older Brother?
“This line we walk as parents is often confusing, and you find yourself always second guessing if you are making the right choices.” Read more. . .
Siblings Of Special Needs Kids Get The Short End Of The Stick
Siblings of special needs children can experience trauma, not through any lack of love on the parent’s part, but simply from the life experiences they have experienced due to being a sibling in the home of a child with special needs. Read more. . .
Am I Safe? Siblings of Special Needs Children
“Another child who needed love, attention, and care. Sometimes because of the sheer emergent nature of her brother’s needs she didn’t always get what she needed. It was never on purpose, but sometimes it happened.” Read more. . .
The Minivan Blues, Every Father Has It
My husband has always said we would never own a minivan, and that he would never drive a minivan. There is that saying, “You should never say never,” right?
We only have two kids so we should be able to fit in a smaller car right? There’s only four of us. But we also have my son’s service dog Charlie who goes with us everywhere we go. He’s a Golden Retriever, so he’s not exactly small.
While we did technically fit in a car, it was a really tight fit for the kids and the dog. Add to that, that our kids are only getting older and bigger. They don’t come from a short genetic pool. Their legs are quickly catching up with mine. I expect that both of them will be taller than me one day soon.
Then there are all the health issues our son has. . . For many of them, what car we drive doesn’t matter. There’s just one really important one- Autism meltdowns. A meltdown in a car with him in the back seat becomes dangerous for his sister and dog. There is nowhere they can go to get out of his way. It is dangerous for all of us because his feet and hands can reach me while driving and I’ve dodged many a kick to the head while driving.
We REALLY, REALLY wanted to get a new SUV with 3rd-row seating. But when we tried them out, we discovered that that 3rd row is really hard to access except for a very few and those few were beyond our price range. We knew it was imperative for safety reasons that we have a bigger car and our only option was a minivan. (Did I mention that it replaced a Dodge Charger that has been my favorite car to drive to date? This was dream crushing.)
My husband still said he would never drive it. (Famous last words.) It is still his least favorite car and he would much rather drive our truck. But for us, the minivan works. Our son and his dog get the back row to themselves. The dog loves the minivan so much, that if we throw a treat back there and it misses him, he leaves it there until getting out of the car. And this dog LOVES his food! Our daughter sits in one of the middle captain chairs. This gives her some space from her brother. Should things really get out of hand, she can escape to the front seat when my husband isn’t along for the ride.
The storage room, um, AMAZING! I can do my monthly Costco and Winco trips together and could easily hit up a couple more stores if I wanted. Shortly after we bought our Town and Country, they came out with a new version that had a built-in vacuum- I was sorely tempted to turn it back in and get that one. Did you spill fries all over the car? Great! Vacuum them up before you leave the car! Sand from the beach everywhere? Vacuum your own row up! Oh, and there are buttons everywhere to lose and open doors. So much easier than the original minivans I grew up with.
One day we can have a car that is fun to drive again. But for now, utility wins.
This was written several months ago and I’m now pleased to say that we have a luxurious Buick Enclave and my husband is now happy. It still has the three rows of seating that make it work for us.
Update: Life During and After 30 Days Respite
In my post, “The Hard Things, The Necessary Things,” I spoke about how we were sending our child away for awhile. This was so that we could have 30 days respite. The last year or so has been really tough on all of us. But it isn’t easy to let your child go or to know that you have made this decision to send him away.
Week One
The first week of respite, honestly was a lot of coming to terms with the situation. There was a lot of Netflix binging and escaping into books. I struggled to find any energy to be able to accomplish life. It was our daughter’s last week of summer before school started. I really felt bad that I couldn’t be a fun Mom and go do things with her. It took everything I had just to get through the day. While I do struggle with anxiety and depression, this was more physical, mental, and emotional weariness. I could no longer keep pushing myself forward with.
Our son called crying and begging me to come to visit the second day he was there. I couldn’t because I had appointments- some of which were for him. But he seemed to settle in after that.
Week Two
The second week, our daughter started school and I found myself alone at home. I think I started to realize that week just how much his medical care takes, beyond all of the issues with behavior with Autism. I started to breathe again during that second week. We are SO grateful for this time we have had to nourish ourselves.
At least until “the” phone call from him. One of my biggest concerns about sending him away was that I couldn’t keep him safe. One day he called and told me about his trip to the park that day. He didn’t want to go on a walk with the caregiver and the other child. So she locked him in the car with the windows rolled up on a hot day and took a walk with the other child. To say I was concerned would be putting it mildly. The caregiver was placed on leave immediately and a CPS investigation started. As it seemed isolated with the one caregiver and she was no longer there, we decided to keep him there after visiting him and talking with the Director. We went to see him at least once a week and talked to him almost every day during his stay.
Week Three
Week three it started dawning on me that he was going to be home soon. I was in the middle of lots of IEP negotiations during this time as well. I spent that week riddled with anxiety. The respite place where our son was staying was letting him watch a LOT of TV. I was worried about him transitioning back home and him not getting as much TV. Not getting TV one of his biggest triggers.
Week Four
Week four we spent trying to make the most of our remaining few days. Dinner and a movie, games, downtime. We installed solid core doors and doorknobs with a keypad on them on 2 of the bedroom doors. There should be no more holes in these doors no matter how mad he gets. Week four was a calmer week.
After Respite
He’s been home for a week and a half now. Although the school has agreed to place him out of district at a private school, we are still waiting on the particulars of which one, so he is home with me all day. We are trying to maintain our normal schedule as much as possible so that when we get school figured out we can hopefully get him into the groove with as little disruption as possible.
So far he has transitioned home well. We have had hardly any physical behaviors and things seem to be going well. We are all much calmer. Not so keyed up and just reacting. We have other trials on our horizon. But for now, we’ll appreciate this win.
I didn’t know how this would go. I was afraid of letting go. But after having those 30 days to concentrate on ourselves and each other, I think we are all doing better than we were before went away for respite.
*Extended Respite Care was provided by the State of Washington and their Medicaid/Waiver program without which this would not have been possible. This provides a way for people with disabilities to stay in the home and caregivers to not get completely burnt out.
