What no one tells you about being a mom of a special needs kid, my life update

It’s taken me a long time to write this. Honestly, so much has gone on. I feel like I don’t have a minute to regroup. Just when I think my family’s luck will change BAM! We get hit with something out of nowhere. I’m sure everyone globally has had a lot of experience with Covid 19 by now. Being an introvert and a loner has equipped me for a life at home. Only now after a year of this pandemic am I starting to feel like I want to go somewhere. I am however, staying close to home till at least Summer if not Fall. The news of a vaccine is good, but so many don’t have it. It’s going to take a long time to get it. I was able to make an appointment for my first shot in April. I am really happy about it. Fingers crossed.

The downside to Covid is my son has had to do online school again. Online isn’t his thing. It’s really tough for him and a lot of kids. When he is home, he wants to do other things besides school. He had a month of in person learning before going back online. This is his Freshman year of High School. Last year he did very well and we were pleased. Unfortunately, Covid prevented him from finishing out his 8th grade year in person. Freshman year started in person but quickly moved back to online.

Also at the start of the school year we almost lost our dog. We had our sprinkler unit serviced and the serviceman left our gate open. Our dog was gone for several hours. We thought we’d lost her for sure. She is micro chipped. So I jumped into my car and drove around all the connecting neighborhoods yelling out my window for her. Of course, it was a nice day. Tons of people were out. Everyone must have thought I was crazy. As I came home I saw an elderly man walking up our street who I didn’t recognize. I pulled in my driveway and there was our dog in the garage. The older gentleman brought her back. He was halfway down the street when I yelled “Thank you” at him. I have no idea where she went or what she did but she was pretty proud of her adventure. I’m amazed the older gentleman brought her home. She didn’t have her ID tags on, only her rabies shot tags. Somehow she got here. I was relieved to see her again. I think she knew she was lost and she stuck close to my side for days after. Needless to say I got her new ID tags and an embroidered dog collar to replace the one she was wearing. That way if she loses the tags the collar has our contact info on it.

My son “E” is in food therapy and has been working on it weekly. He has a really long way to go. I’ve said it before but I’ll say it again he never eats any fruit of vegetables. His sensory processing effects this. He is at the point where just looking at certain fruits makes him nauseated. His new I was eating an apple next to him and he asked me to move so the apple was not by him. Right now he is just going through very basic stuff, like looking at pictures of food, touching boxes of food etc. Very slow. But I am hopefully. This current therapist is levels better than his last food therapist. It’s like night and day.

I do think this is going to be multiple years of work. I told the Occupational Therapist that I just wanted him to be able to eat 2 fruits and 2 veggies. That would be a huge difference. I’m certain that he has deficiencies or is malnourished by this won’t be solved in a year or two. I wonder how this effects his learning and growth. We use about six different supplements. I can get him to drink a smoothie on occasions but not daily. I don’t want him to get sick of them by offering them a lot. He still has food jags. So I have to be careful to space them out. I try to hide things in food, even if it’s a little too.

In December, we had parent teacher conferences. We were pleasantly surprised by how well “E” did. He had one A, three B’s and a C. Each teacher gave us a good report. We were happy considering how the last three years have gone and the struggles he still has. So with this good progress report we decided to back off on our son a little. We allowed him to work more independently. His anxiety and panic attacks have gotten so much worse than before Covid. He was really making strides on his exposure therapy and starting to go to school without panicking at all. Unfortunately with anxiety if you don’t continue to work on it it will get worse. Since Covid-19 kept us from going anywhere his anxiety came back with a vengeance. Then in February his school announced they would be returning to in person learning again. He was terrified.

So I called the school to let them know. After all, this is a school for twice exceptional learners. Autism, anxiety and other learning disabilities are listed on their website. They should know how to handle it right? When I told them, the next word out of their mouths was “we have been talking and we believe that “E” would be better off at another school.” HUH? Absolute shock. It came completely out of the blue. I really didn’t know what to do. The administrator basically told me that it was due to his anxiety. I asked what our options were. After all, the school was founded for kids like my son. So they said they would see how he is over the next two weeks and we would have another phone meeting. So each day, my husband and I spoke to our son and said “We know things are rough. If they see you having panic attacks or start coughing, they are going to be upset. You can’t react to it. I know its rough, hard for you, but we have no choice.” It was rough for him. Lots of tears. I knew how damaging it would be to tell him to stuff it down and push yourself. But what choice did we have? We are trying to keep him in the school he has made friends in, become accustomed to. We even asked if he could repeat a grade or retake classes. The thing is they went from telling us he was great to a month later telling us to go somewhere else. I also want to state that at no point ever did he have behavior problems or was disruptive. So two weeks go by, and this time we have a meeting with both of the school administrators.

During the Zoom meeting they told us the same thing. That he needed to go somewhere else. They tried to frame it like they were doing us a favor, but it wasn’t. The two weeks that he endured were not really on the table. I think they didn’t want to give us a chance but told us they would so it wouldn’t be an uncomfortable phone call. They told us about his anxiety and throwing up. They also told us that he was producing minimal work, he requires too much support to do the work, he’s too dependent on adults, doesn’t self start, he’s shy, does less than other kids, he’s not at age and not reaching potential. WHAT? Where the h*ll did this come from? A little over a month ago we had a progress report and parent teacher conferences that were glowing. We have never gotten a phone call or email about any of this. The only thing we were being told about is his anxiety and school nerves.

If he was having all of these issues and doing so poorly why were we not told? They told us they did. No, they didn’t. I print out every email I get from them. I keep notes. If anything they may have said “oh, he’s a little slow to get going.” That does not mean “Here’s a huge problem you need to know about.” If he was doing that badly, they should have told us. They should have called us, sent a specific note home saying you have severe concerns etc, or called us in for a meeting. No communication, no warning. Even on this second call we were stunned. It was painfully obvious we were not going to get anywhere.

Where were we going to go with him? Very few schools work with kids with anxiety. As we started to research new places we found that most of the schools had already filled their rosters for 2021-22. Most of them are so in demand they have waiting lists and lotteries for enrollment. So even if we didn’t miss their deadlines the chances of him getting in with such a backlog of other contenders and his diagnoses was slim.

His current school said they spoke to another school about “E” and they think it would be a good fit. So we went to tour the school. We filled out the application and paid the $500 non-refundable fee to start the process. We also gave them about a two inch pack of papers from various therapists and psychiatrists about him and his diagnosis. The school told us that his current school did not talk to them about “E” like they said. I wasn’t sure it was a good fit. This school is for Autistic kids both high functioning and low functioning. While our son does have the Autism diagnosis, he is right on the borderline of the spectrum.

A few days later, we get an email from the admissions officer saying their (admissions) team met and had concerns about four things- basically his diagnoses like anxiety and depression. So I fire off an email saying I am willing to discuss any concerns they have, and I will also make my kids therapists and doctors available for them to talk to. They were not sure and said they would have their counselor call me and discuss our child.

Then I took E on a tour of the school. He was very nervous and the tour only lasted about 10 minutes. He said it was okay. I could tell he was thinking that he would have to start all over again.

Meanwhile, every day we would take E to school and we would get a phone call that he was ill and to come and get him. His anxiety was making him throw up. Plus, attending a school where you feel no one wants you is tough. They told him that he couldn’t stay because he wasn’t in class. Well duh, he has anxiety. You are a school founded to help these kids. WTF? They cannot keep their stories straight. By this time, my kid is so upset he starts having trouble just leaving the house. All the stress is effecting him. Then we get an email from the school founder to talk.

I will fill you in on the rest in the next update.

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