Mixed Bag

Sorry for the delay in posting; it’s been a busy summer. Summer is always challenging as a single parent of a special needs child because Dear Son is only in summer school in the mornings and eventually out of school after a few weeks; this means I am caregiving most of the day or nearly all of the day. At this stage, it’s physically demanding and tough to run many errands since it’s too hard to take him along.

Summer school started last month and I spent the first few weeks attempting to get an aide for the school bus. There are seven special needs teenagers on the bus with one bus driver and no aide. I did not feel that was safe. I said that it didn’t make sense that Dear Son had a Medical Assistant at school and no aide on the bus for summer school. They agreed. In addition, I had some concerns since it was so hot on the school bus-they don’t have air conditioning and Dear Son’s had pneumonia so it may be harder on him since his lungs are weaker. (During the school year, Dear Son goes out of district to a different high school There is a special education co-operative that handles the special needs kids. For summer school, there is a joint venture between a special education park district type group and the school district. Essentially, the kids swim four times a week and then do a lot of fun activities throughout summer school, like school concerts, picnics in the park, etc. Dear Son loves it.)

I had several conversations regarding obtaining this aide for the school bus and around the first of July I was told it was approved. The aide was supposed to start asap. When the aide didn’t start, I questioned it again and there was discussion with the school district as to whether or not an aide was indicated in Dear Son’s IEP. (He did have an aide on the school bus during the regular school year.) I did not see it indicated in there so we do not have an aide. I had follow up conversations and they agreed yesterday that they could switch him to another bus for the remainder of the school year however summer school ends on Tuesday and I decided to let him remain on the current bus since I was comfortable with the bus driver and I didn’t want to make changes at the last minute.

Next, Dear Son had been having more seizures since he was released from the hospital last month. They started almost a week later and seem to go in groups. He might have a lot for a few days and then o.k for a few days. The Vagus Nerve Stimulator works well however I had a few times where it didn’t stop the seizures. I had seizure levels drawn and will follow up with the neurologist this week.

In the last week, he began having some issues with his right hand and arm. Dear Son has no functional use of his hands or arms (He has an apraxia. Also, there is a movement disorder that is the result of the ARX gene defect.) I wasn’t sure what was wrong only that I didn’t feel things were quite right. His right hand was swelling quite a bit and was losing color. I became concerned because the swelling was not symmetrical with his other hand and because his hand was hanging down at such an odd position it was practically getting caught when he got on and off the bus making it more challenging. His issues with the hand started last Monday.

On Wednesday of last week, the school contacted me and said Dear Son would be late. There was a bus accident and Dear Son was not injured but he would be late. Apparently, his bus was stationary and another special education school bus attempted to pass their bus in the parking lot at the pool and had the ramp still in the out position. (There are a lot of special education busses at the pool, maybe fifty or so, making it very congested.) It sheared off four windows breaking all of them and damaging the bus pretty well, with Dear Son inside. Luckily he wasn’t hurt. I can’t imagine if he would have been sitting back further (he sits behind the bus driver) since he would have been hit in the head and not been able to move or help himself. Since the bus was damaged, they had to wait for a replacement. Dear Son is the first pick up and the last one dropped off so he is on the bus longer than any other student, for around 45 minutes. This was problematic since he needs his medicine at lunchtime and when the bus is late, he’d miss his medication. They made provisions and had a co-op bus drop him off so he could get his meds.

The bus accident was a good example of why there needs to be an aide on the bus. If it were a more serious accident, there is no way one bus driver could attend to seven special needs children, or even get them off the bus. This is a huge liability issue. It’s also difficult for the bus driver to drive and to attend to these kids, especially if any of them have an issue.

On that day, I spoke with the school nurse and requested she check out his hand to see what was wrong. She said she’d check it out and get back to me. She called me two days later and said that she was very concerned because his hand was swollen and contracted at a 90 degree angle and cutting off his circulation. She called me on Friday evening and thought he needed a brace for his hand and should be seen.

I contacted the Pediatric Orthopedic Surgeon on call at Big Academic Medical Center on Saturday morning and eventually took him to the ER. By that time, they thought his hand was fine and the swelling had gone down. They did x rays and released him. I am not certain I am entirely comfortable with that decision so I will do some more appropriate follow up.

In the interim, I contacted a worker for Respite however she isn’t able to start until this week. She has worked for me before however the challenge this summer will be to determine if she can get Dear Son out of the wheelchair when he gets home from school and lie him down so he can get his feeding. We’ll see if it’s doable. It’s extremely difficult finding any help at this stage since he’s so heavy and most men and women can not lift him. He has two male aides at school at find moving him difficult. This girl has an older brother that was bowel/bladder and brain injured in a car accident and has been helping care for him for several years. Her brother is 275 pounds and is now somewhat ambulatory. She is the niece of our normal Respite worker and we’ve had her before. Since we have no nursing coverage on either of Dear Son’s insurance plans, it’s challenging.

In addition, I have been having a lot of issues with my back. I have had issues all of my life however they have come to a head and I am unable to stand for more than a few minutes and can’t walk very far. I am having some back surgery at the end of the next month to fix that.

Summer can be challenging for parents of special needs children. I have said multiple times that we need to have affordable daycare for all children in this country, especially special needs. It is very difficult to work, even part time, when he goes to school from 8 to 12 p.m. for five weeks in the summer and then he’s off for a month until school starts. It’s a lot of care in addition to the difficulty in finding any workers and paying for them on a part time employment which is a mere fraction of what I could make if I worked full time (I make 95% less than when I worked full time.) I don’t know many single mothers who could work without any access to daycare and yet we expect mothers of special needs children to work without any access to daycare of any kind or nursing care of any kind.

During this time, I also had been working a part time job and had taken the month of June off since I didn’t have a sitter. When I returned, I had to quit that job since they had a new requirement of availability which included x number of days and weekends and I can not meet that schedule with Dear Son. Without daycare for special needs, it’s difficult to meet the needs of most employers.

Fortunately, I have started my own business and can set my own hours. It’s still a challenge and there are more expenses and work with it but it should be a little easier. I am fortunate that Dear Son’s father has been able to help me and has been babysitting so I can work a few days. He's also helping me with all doctor appointments, ER visits and anything else. I couldn't do it without his help.

I am a bit behind on setting up medical appointments for him. I need to follow up with the ENT regarding the botox injections since I haven’t heard from them. I need to make an appointment with GI, a dental appointment, appointment with the wheelchair vendor for wheelchair repairs and to get a new sling for the Hoyer Lift. I have an appointment for him next month with ophthalmology to look at his eyes since he is having some issues with strabismus. He had surgery eleven years ago to fix this but only had surgery in one eye with the plan that if he had issues with the other eye, we’d follow up. He’s had regular eye exams however his one eye seems to be getting worse.

Overall, just a normal summer for us. Summers are challenging for all parents of special needs children and this summer isn’t any different.

I hope to get back to blogging again later this week or early next week.

Thank you for your patience and concern for Dear Son.