“I’m seeing something in the education world I’m not really thrilled with. Maybe because it’s my favorite subject- math? 😉
Both of my children have struggled with math. It doesn’t surprise me at all. Their parents did, so it would be understandable that they would. But the reasons they have struggled are different.” Read more. . .
“We are in a messy middle trying to figure out how to make school work for my 12 year old son with Autism, ADHD, Dyscalculia, a sleeping disorder and a few other things.” Read more. . .
But still, those words burned into me. “He doesn’t fit into our community.” Those words are daggers to a Mother’s heart. They all agreed with this statement. We unanimously agreed to change his school placement. I had won, but I walked out of school heavy hearted. Read more. . .
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.
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.
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 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 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.
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.
Anxiety is literally eating me apart.
One day this past week I couldn’t get my son to go to school and I didn’t figure out until later in the day that it was due to a new testing system. He’s never had any problems taking tests. It makes me wonder if they are following his IEP and actually giving him the testing accommodations he has a legal right to, due to his disabilities. Some of these accommodations are things like having a scribe, having the questions read to him, a bit of extra time, etc. This ensures that he can show what he actually knows, and doesn’t get caught instead in the mechanics of the question. But are these accommodations happening?
I signed paperwork to start a Functional Behavioral Assessment early last week. Things have not been going well in his first year of middle school. He’s reading a book or drawing or watching YouTube videos rather than participating in class and that isn’t going to get him an education.
The Vice Principal called at the end of the day on Friday to let us know that the teachers had come up with a new plan. He would still follow the 6th-grade curriculum track but starting Tuesday, he would be going in and staying with the 8th-grade class. They told me he can do all his work on the computer. But who is going to monitor him to make sure he isn’t on YouTube? If he does all his work on the computer, how will they teach him to work in groups for group projects when that is something he is highly deficient in his ability to do at this time?
They tell me he will still be getting the same content as the 6th graders it will just be a quieter environment that hopefully, will make a better work environment and he will be away from the kids that are setting him off. But how is it appropriate to put a 6th grader who is behind in at least half of his subjects with 8th graders? How are the teachers going to deliver his content, while they are teaching 8th-grade level subjects? He is already behind, there is no way he can keep up with 8th graders.
I am afraid that their next move will be to decide to place him in a self-contained classroom if this doesn’t work. But for him, that would definitely not be the least restrictive environment, and it is the law that he is placed in the least restrictive environment. I am worried that should he be placed there, he wouldn’t get an education. They would just babysit him and he would pick up more inappropriate behaviors in this setting from children who are lower functioning than he is.
Our meeting to discuss all this isn’t scheduled for 3 weeks. The torture of waiting to see what is going to be the educational outcome is crushing because these decisions can really make or break a child’s success and this is MY CHILD.
In the meantime, his behaviors have been escalating. Christmas break and the break in his routine was not our friend.
This has made my anxiety crush me, and insomnia a frequent occurrence. The years of dealing with these situations have given me PTSD with regards to school meetings of any kind. It’s taking my max medications and supplements for me to get through the day. Friday and Saturday after a root canal I couldn’t deal with things. But somehow I have to.
I don’t know why it is this way but it needs to change. Parents with children with Special Needs shouldn’t have to fight SO hard get basic educational needs met. Yet we do, and we will continue to.
I’ve been thinking a bit lately about all the time and energy that Parents of Special Needs children expend. We can truly move mountains for our kids. Mountains of paperwork, mountains of professionals who don’t want to listen to us, mountains of physical and medical issues. But what if we didn’t have to and all our children’s needs were met and we could expend that energy and time elsewhere?
The parents I know would change the world. So much of our time is spent fighting to just exist. The schools, insurance companies, and doctors don’t see even a fraction of what we are capable of if it didn’t take everything that they had to make sure our child is fed, happy, and alive. (Believe me, they wouldn’t want to see us if we weren’t completely drained because they would lose every time.)
Personally, I have to parcel out my energy for fighting battles. I have to be in the right mood and my anxiety levels down so that I can wage war. Because it truly is like waging a war so much of the time.
Parents, Grandparents, and Caregivers give your self a pat on the back. You are SO capable the world wouldn’t know what to do if we weren’t so busy with everything else.
Our kids often don’t fit neatly into that descriptive box. Even if you find a good descriptive box, there is a lot of prejudice and misconceptions about those boxes.
New school year, new teacher. Your child has an IEP but do all your child’s teachers know that? What about Music, Art, and Gym teachers? We are starting our Middle School adventures this year. How does that even work with him changing teachers all day?
You have this beautiful, wonderful child who can sometimes be misunderstood. How can you be proactive without becoming one of “those” Moms?
Something that I was introduced to last year was a child’s resume to introduce your child to the teacher. It has your child’s name and picture at the top. After that, you outline your child’s strengths and weaknesses. If your child gets upset easily or has certain triggers that will set him off- How do you de-escalate them? Special interests that will help them redirect them when they get upset or distracted.
This way it should cut down on misunderstandings, talks with the Teacher, or (gasp) Principal. Awareness of the issues as we know can make a world of a difference.
