“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.”
Read more…
Sibling of a child with Special Needs
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. . .
Child With Special Needs? Finding Help Isn’t Easy
We had just been trapped for 45 minutes in the parent’s lounge of the Pediatric Psychiatric Ward of the hospital while our child hit, kicked, screamed and cried at us from the other side of the door. It took multiple staff members to remove our child to his room so that we could exit safely. We needed to attend the mandatory safety meeting to help us begin the process of bringing our child back home.
Holding back tears, and shaking like a leaf, we went to the meeting. We sat through discussions of what to do with sharp objects, weapons and medications at your home before your child can return home. None of this applied to us. It might one day, but for now, this was not our situation.
We had been told, “Bring up your safety issues during the meeting.” And so we did.
Our child doesn’t try to hurt us with objects and doesn’t try to hurt himself. Instead, it is his body he uses. To kick you, hit you, bite you, anything that can aid in the mission to get that coveted object. Something with a screen or more food. When my Husband is home he can protect us. I can no longer just pick my child up and put him in his room when he has a meltdown and starts acting out.
Our safety plan for my daughter and I to get into a room and lock ourselves in until he calms down. The problem is that because he is now bigger and stronger, he punches holes in the doors. It won’t be much longer until he can physically break the door down. Unlike the Children’s Psychiatric Ward, our house isn’t made of safety glass and industrial doors.
Our question for the professionals was, “What do we do to protect ourselves?” The Therapist’s reply-
“That’s out of my area of expertise.”
That’s all that she said. That is where she left our question. That is where she left us. We just wanted help.
As a parent, this leaves me in a terrifying position. How do I protect one child and myself, yet still providing boundaries and other needs for my other child?
When they released our child, one of the documents they sent home stated that they hadn’t seen any of the behavior issues that had led to him being admitted. Did I just imagine those 45 minutes being trapped in the parent’s lounge with my Husband? I must have imagined all those kicks to the door and screams. Did I imagine the staff’s instruction to not come out until they had a plan in place for our son to be safe that he would agree to? Knowing that just an hour earlier he had an earlier meltdown which also required multiple staff to remove him from my body as he desperately tried to get to my phone?
My child is not always like this. He is not always trying to hurt us. He can be loving and kind.
These are the situations and dilemmas that parents of special needs children face. This is what our lives can be like. We each have our own individual situations. We each have our own issues. But we are in need of help that is often just not available to us.
*This post was originally written about 6 months ago. I have spread out the posts on Psychiatric Wards so that you don’t get them all at once.
If you would like to read more about these types of experiences you can do so here and here to start with.
Birthday Parties and Autism
“For years I have dreaded my kids birthdays. Birthdays are supposed to be fun and exciting days. Autism has taken that from us. Instead, they have been filled with dread for me every time each of my kid’s birthdays approaches.” Read more…
Friday Memes
Brought to you by the children of “An Ordinary Mom”.
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.
Teaching Our Children to Be Kind- Despite the Disabilities of Others
“How do I teach my daughter to be safe, how to not become a doormat, and yet be kind and friendly to a child who, I’m just guessing, but probably really needs a friend or two?”
To My Daughter- One Day I Hope You Understand…
I’m fumbling my way around trying to figure out how to balance all this craziness and I fail. I fail often. I hope one day you see me as a person, not just your Mom and can give me grace, that you don’t have to spend hours on some psychologist’s couch trying to make sense of why your Mom was often unavailable to you. She tried. She really tried.
I hope one day… you understand.
