“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.”
Read more. . .
Medicaid
The Dramatic Highs and Lows of Special Needs Parenting
“We live in a world that can have life and death situations in it, not just a few times in a lifetime, but frequently.”
Read more. . .
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.”
Read more. . .
Dear Medical Professionals
“Yes, it’s almost like we are asking you to be God. But you don’t have all the answers, and can’t preform all the miracles.”
Read more. . .
When God Opens a Door- Get Out Of The Way
“For at the past two years I have been praying about our life in Washington State. It started when I learned that Washington state has a law that the age of consent for drug rehabilitation treatment and psychiatric treatment is 13. This means that at the age of 13, a child can get treatment without a parent’s knowledge. But it also means that they can refuse treatment that they need.” Read more. . .
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.
The State of Long-Term Medical Care For Children in the U.S.
“Where does that leave parents? Where does that leave vulnerable children? This needs to be part of the discussions being had about Medicaid. This needs to be part of the discussions that we as American’s have about helping our neighbors when they can’t do it alone. It shouldn’t be this hard to help a child. Especially when all the research shows that early intervention is the most successful.”
Wanted: Mary Poppins
We want help. We NEED help with our special needs children.
Medicaid provides ways for us to be able to receive help with our children. It does this through getting them out in the community so they aren’t just stuck at home, giving us a break through respite care, and nursing services for those whose health is such that it requires nursing. This provides us with a much-needed break so our children can stay at home with us and not be put in an institution. This is called a Medicaid Waiver. As a side note, this is far more cost effective for the general public to subsidize as we provide the bulk of the care for the disabled through Medicaid, then to pay for institutionalization.
In some ways, it’s like finding and having a Nanny come in and care for your child. For me, it is especially difficult as I have been on both sides. I worked as a Nanny for 9 years. I know what it is like from their side. I’m always second guessing what I’m asking them to do.
It’s a whole other ballgame when you are on the other side of things as the employer. These caregivers have goals they are supposed to be working on with your child. They are focused just on this child. Which creates a unique problem if you have more than one child. To truly get “respite”, you need a break from ALL children. So you have to find someone else to watch your other children at the same time which makes it weird having two people who probably don’t know each other watching your children in the same house. So you frequently don’t get any “respite” because you don’t use it for that. Instead, you spend time with your other children. And then you feel guilty because you haven’t spent one on one time with your child with Special Needs. Or you have two disabled children who each have to have their own person, so you need two people who work well together. This is just the beginning of the issues.
And then there is the issue of them being in your space all the time. Your bathrooms or house isn’t clean because you’ve been sick or just too busy? Disagreements with your spouse? A bad day where you just can’t seem to be nice to anyone? They see it all. It’s embarrassing, it’s frustrating.
Ideally, you are looking for someone who fits in well with your family. Someone that isn’t too passive with your child and can hold firm but be kind. Someone who is willing and open to learning new things since they didn’t receive training, you are going to have to train them. Someone who is reliable. You wouldn’t believe how hard this is to find. This last go round of us trying to find someone to work with D, they would show up for the interview, say they want the job and never show up again. D got to the point where he didn’t want to meet anyone else or have anyone in our home. You want someone your child feels safe and secure with. Really, you want Mary Poppins.
I don’t have any answers to solve all the problems. I do know that Medicaid provides a very important safety net for families like mine. Otherwise, we face burnout which isn’t good for us, our child, our family or community. It isn’t perfect and there are many tweaks that could be made to make it better. But as families we are very grateful and will keep trying to find a way to make the system work.
Working as a Parent of a Special Needs Child
I don’t have the answers, but I know there’s a problem.
Medicaid- A Dirty Word?
“My son uses Medicaid.
There. I said it.
As a sometimes Republican, there is a bit of shame attached to saying that. Frequently in this nation, we think only lazy losers use government programs like this. For the record, people who use Medicaid are not lazy losers.” Read more. . .
