Disabled Parenting

When A Child Is Properly Supported at Home and at School, the Possibilities are Endless

A is my half brother in law who my husband and I have guardianship of. He and my husband have the same father. LONG STORY. I have permission from A to tell this story. He is super proud of himself. Anyway, when he came to us at 5 years old he was scared. He is autistic and he has type one diabetes. He was in foster care from when he was around 2 years old until 5, when we got custody.

How A was When He was Not Supported and Medically Neglected

When he was in foster care, he had a hard life. He was removed because his biological mother was giving him insulin blindly. His half brother on his mother’s side was testing his blood glucose when he got home from school. He was 16. He wanted to keep his brother alive but it shouldn’t have been his responsibility. I owe him so much for keeping him alive. If he didn’t do this, I don’t think he would be here today.

After he was removed, he was put into foster care. He had 4 different foster homes. The third family wanted to adopt him. They caught wind of our custody petition and they put him, J and D in respite. He was about 3 at this time. The foster mother said if she couldn’t have him, no one could have him. She disconnected his insulin pump and put it in his bag. The respite family was not told that he has type one diabetes. The respite home was his 4th foster parents. That foster mom is a type 2 diabetic and recognized the signs when his blood glucose was too high. She rushed him to the hospital. They discovered an insulin pump with his belongings.

That resulted in a hospitalization and he went into diabetic ketoacidosis. That means when the liver produces too many ketones, it literally turns his blood to acid. When a non diabetic has ketones, the pancreas produces insulin to get rid of them. But in a type 1 diabetic, the pancreas does not produce insulin. When we test him for ketones, we push water and give him extra insulin. If his sugar is at a normal level, this happens when he is ill, we have to give him full sugar gatorade to make sure his sugar doesn’t go too low when trying to prevent DKA.

Anyway, this foster mom was the last one. She was great. She really fought for what he needed but since she was a foster parent, her hands were tied to do what the foster care agency wanted. They did not have his best interest at heart.

The foster care agency had her register him for school about an hour away. She didn’t have a choice, so she did. She made sure to give them all his medical notes, etc so he would be safe. But he was not. The nurse at the school refused to check his blood sugar before he went on an hour bus ride.

His sugar bottomed out and he had a low glucose seizure. Lets just put it this way, when he first came to us and we were still trying to get a baseline on his insulin doses, he went to 35 ml/dl and he did not have a seizure (Don’t worry, when this happened we were on the phone with his endocrinologist and she helped us stabilize him. No hospitalization needed and it only happened once. She adjusted his insulin doses there. This was when he wasn’t on a pump). His sugar must have been lower than that.

Anyway, they treated as an epileptic seizure, which is the opposite of what is supposed to be done. He has a glucose injection called glucogon and it is supposed to be administered and then an ambulance was supposed to be called. It happened right when he got home. The foster mom freaked out, called 911 and they had to remove him from school. She tried to home school him as much as she could but it was really hard.

He hadn’t been in school until he came home to us. This was his preschool experience.

A When We Were Navigating School to Place Him

In preparation for getting custody, I put him on the child find waiting list. Child find is the program here in Florida where preschoolers get an IEP. His birthdate was after the cut off date so he was able to do some preschool.

We called and asked the length of the waiting list. They said 3 months, so we called 3 months before court to get him on the list so he would go in for evaluations soon after he came home. It was a good plan and it worked.

As soon as we brought him home we did need to go to the hospital to get a base line. HIs foster mom as good and sent us with one month’s worth of supplies and insulin. Due to the stunt the other foster mom pulled he was on multiple injections a day because he was scared of the pump. I cannot blame him. So this is what we did. We found out that his dosing that he was on while in foster care was way off and he started to become more regular.

Soon after that, we brought him in for his IEP evaluations and a couple of months later, he had an IEP and was ready to start school. My son Bug was going to this charter autism school before he was mainstreamed so I decided to send him there with the same stipulation, no ABA. They did put it in his IEP so we were good to go. The first few years at this school, no problem.

That is until he was transitioning to a pump 2 years later. The BCBA and the principal got involved. My husband and I were there for this. They decided to tell A he couldn’t have birthday cake on J’s birthday or cereal ever again. I so happened to be on the phone with the endocrinologist. She said never to limit his food because she wanted him to gain weight. She let into them when I handed her the phone. The nurse got involved and the director of the school and that got settled. The doctor put not to limit his carb intake so it wouldn’t happen. I sent them a couple of studies showing how feeding only low glycemic index food to type one diabetics can be damaging and they stopped.

All was fine and well until his teacher was not sending him home with his phone. His phone is a medical device where it transmits his blood glucose to our phones every 5 minutes. They stopped doing that when I went back into the school and made the security guard break into the teacher’s room. That never happened again. They placed him with the teacher he had before where we had zero issues with. She knew how to care for him with no hiccups.

Then the issue with this past nurse who has “25 years of experience” and tried to give him insulin when his sugar was low. That was the last straw. We pulled him out of the school immediately. The school didn’t seem to care.

We let Bug finish the year because his life wasn’t in danger. He was about to go to middle school and going to another elementary school for a month wouldn’t help him at all.

Being Supported at School Finally

The next school was the local public school with a program geared towards autistic children. No ABA was used but they put that in bold in his IEP so they wouldn’t. N was already in that school. Since they both work well together, they put them in the same class at my request. A is only semi verbal and N was telling me off before he turned 2.
 
I spoke with the nurse about A and we met with her the day before he went to school. I mostly wanted the diabetes care to be drama free. He has had enough drama in his life. She agreed. She was also horrified on how the other school handled his care.
 
We had brand new doctors orders faxed to her. The next day he went to school, I felt confident that he was being cared for. Then I found out the school district has a diabetic educator with the same pump and CGM as A does. She met them during lunch to go over everything.

The boys’ teacher sent home notes every day. They texted and emailed if there was an issue. The nurse called to update things for me and gave me her direct line if I wasn’t seeing any readings. She became really good at resetting sharing because sometimes Dexcom needs a little help. Nothing both love for this nurse. She is still amazing with my kids.

The Results of Being Supported At School

At the old school he was on a curriculum called Access Points. He would have had to take a test for his GED in order to go to college, trade school, etc. When being transferred to the public elementary school it was the plan to transition him onto the state standard curriculum. This is important.
 
Anyway, today we had an IEP meeting for A. When I called in, I was running late because I had a meeting at D’s school with the principal and the teacher.
 
Anyway, the teacher, the ESE coordinator (special ed in Florida) were there and they were just so excited and I did not know why. Then the teacher began to talk.
 
A is completely transitioned to the state curriculum and is on track to graduate with a high school diploma.

There is more. His is being discharged from occupational therapy and physical therapy. He has been almost completely independent at school with his diabetes care. The nurse just supervises him to make sure he is putting in the right number.

On top of this, he talks with the cafeteria staff and tells them he needs to look on the package of his food to find the carb count so he can bolus (give insulin) for his meals. They also told me he is making healthy food choices.

Considering all the trauma he went through all these years, he was finally in a school that supports him and he has accomplished so much.

ALL THIS IN UNDER 7 MONTHS.

With the right supports, kids can be successful. Don’t cast your doubts onto them. They will have a negative self image and think they cannot do anything.

I am so proud of him.

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