A New Era of School For Us

Written Tuesday September 5th.

Tonight my anxiety levels are high. My oldest starts middle school tomorrow. In the best of circumstances middle school can be full of daunting experiences. My little boy has Autism so it’s hardly the most ideal circumstances. 

I spent a lot of time researching schools. We have the option in Washington state to “choice” our children into any public school we want so I took full advantage of the oppurtunity. I choiced him into a K-8 school as I felt strongly the smaller environment would be better for him. A week before school starts I get a phone call saying they had made a lot of changes to their program and the physical space. Now there would be 60 kids in the room at one time… So much for my small environment. After talking things over with them, we’re going to give it a try. Hopefully this works.

All new school, all new type of schedule. New expectations for this child that doesn’t deal well with change and transitions. We just figured out Elementary school!

My heart goes with both of my children tomorrow as they start back to school. May they find true friends and truely learn to love learning. But my anxiety also will be joining my son’s path down this new territory. 

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Where Are All The Teenage Babysitters?

When I was a kid, one of my primary sources of money was babysitting. I bought lots of books and sheet music with that money. When my children came along I thought it wouldn’t be a big deal to find a babysitter (this was prior to learning about Autism and everything else). But where were all the teenagers? I looked high and low for teenagers to babysit. Occasionally I would find one of those very rare elusive people. What happened to all the teenagers?

Now teenagers are too busy with sports and other worthy things to be bothered with babysitting. Their parents give them the money and items they need and want. There is no need for them to spend a couple hours playing with kids, eating some pizza and then spending the next few hours watching tv while the kids are in bed for a few bucks.

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I wonder however if we are doing them and our communities a disservice though. While the parents pay for the babysitting, it truly is a service to the community at large to provide those babysitting services. It helps produce happier marriages, happier people, saner mothers.😉 Kids learn that working is important. They learn the value of money. Kids get to practice their parenting skills to begin to figure out what works. This all benefits the community at large.

My daughter isn’t old enough yet, but when she is, one of my goals is to make sure she isn’t too busy to help out a stressed out mother and earn a little money by babysitting.

Working as a Parent of a Special Needs Child

Every parent has their struggles as a working parent. The guilt from being away from your child, the worry that you are making the wrong decisions, the child care worries of who will watch your child while they are sick or during summer break and the financial burden. These are real and difficult struggles.

The list of issues that parents have when trying to work when they have children with special needs includes all these issues and a lot of others.img_2656

Our children are at the doctor’s ALL the time. Currently, D is pretty healthy and we rarely see his pediatrician. But he currently has 5 specialists currently following him.

Our kids go to therapy multiple times a week. We’ve had as many as 7-8 therapy visits during the week before and that isn’t unusual for families.

Many children with special needs deal with behavior issues. These are complicated issues and frequently mean many calls from the school or daycare to come pick up your child. Luckily we haven’t had to deal with this one but I know many families that do.

Things can change in an instant. Your child is doing totally fine and then suddenly they are in the hospital or having behavioral meltdowns all the time. For us, D struggles with an as yet undiagnosed sleep disorder. Some days it’s impossible to wake him up and all plans are canceled until we can get him awake. Other times (thankfully less frequent) he doesn’t sleep for 40 hours and I’m afraid to take him somewhere in case he finally does fall asleep and then I can’t move him and I’m stuck.

As both my children are in school now and things “seemed” on some levels to be calming down with D, I started thinking maybe I could work. But our life is SO unpredictable because of him that no employer would be that understanding with a job. I would need to be able to work while the kids are in school because my husband’s work hours change constantly. That knocks out a lot of jobs. I could work at the school, but there are two problems with that- Daniel not letting me get there on time and having to leave for appointments for him, and the fact that I have worked with children literally my entire life and I’ve become really burnt out working with kids. It wouldn’t be good for me or them. That really just leaves online jobs. But even that would have to be super flexible.img_2657

One of the biggest challenges that parents of Special Needs children experience is just being able to go to work. These kids are VERY expensive and the financial stresses this places on parents can be very heavy. This is one reason programs like Medicaid are a real life saver for families. It helps pay for all the medical visits and prescriptions but it also provides in-home and community-based services to give parents and caregivers a break. Because of all this, most two-parent families have one parent who cannot work who must stay home to take care of their special needs child. Those who don’t have a 2 parent household often have to make a choice between important therapy for the child and working. Many parents are drastically underemployed because of this as well. Something that really needs to be looked at is a way to find better solutions for our families to be able to work and be self-sustaining. I don’t have the answers, but I know there’s a problem.

STEM vs STEAM

A popular move in education is moving schools towards STEM or Science, Technology, Engineering, and Mathematics; so students can keep up in a growing technological world. D has graduated Elementary school this year so I’ve been thinking a lot about Middle School and Education this year as we prepare for the switch in schools for him.

The Middle school that D is supposed to attend recently became a STEM school without consulting the parents and teachers about the switch. All Music, Drama, and Art classes have been dropped. I was told that should at least 40 students band together and want one of those classes, the school will provide an online option.

How in the world do they expect to teach students to tune their instruments via an online class? How will they troubleshoot issues with instruments that inevitably happen with students that are new to the instruments and usually renting the instrument? I could go on and on about how this is not an option that will really work. I’m all for it in places like rural Alaska where it may be the only option, but we live in a suburbs of Seattle and Tacoma WA. This is not our only option.

Here are just some of why the Arts and Humanities are SO important to me and why they should be important to you.

The Arts, any form of art, is creative. It causes you to use a different side of your brain. This side of your brain is what is used to be creative, to be inventive, and innovative, and even in the STEM areas of the industry, you need this to stay ahead. The Arts train your brain to think creatively.

The Arts help prevent and aid in healing mental illness, through people being able to express themselves, be it through writing, and art of any form be it music, dancing, acting. It feeds our soul even if we are only observers.

It has been shown in repeated studies that exposure to and being trained to play a musical instrument makes a person smarter.

If we continue on our current path of focusing solely on STEM, I can see a day one day when the old masters of music, the written word, and art of the world will be lost because our children will not appreciate the beauty and majesty of their creations.

I’m FOR Classical Education which includes a broad learning base. I don’t have a problem in High School or the last couple of years if a child focuses on STEM or some other area that they plan on working in IF they have been given an adequate base of knowledge in Classical Education.

Unexpected Gifts on Vacation

This summer our family was on vacation and due to a lot of reasons (sickness and allergies being chief) it was a difficult vacation. What I didn’t expect though were some unusual but great experiences we had on our vacation.

First, I had the opportunity to meet with a Mom who was struggling to find supports in her area. I don’t think I helped much as I don’t live in the area and could only offer general information, but I hopefully helped her find people who can help. This was good for me as it reminded me of why I do what I do. I remember starting this journey of Special Needs and not having any answers that I needed. I didn’t know where to find supports or how to find them. I swore to myself at that time I would do everything I could to keep other parents from that situation. This experience also gave me a chance to reflect on and say a prayer for all those who have helped me on my journey. I really appreciated that, and I enjoyed making a new friend.img_2823

Next, we were visiting some cousins and a 13-year-old with Autism kept coming by to visit. He is pretty severely impacted with Autism and kept escaping from his parent’s home. It filled me with so much joy to see how kindly these cousins interacted with him. If I could clone them and populate the world with them I would, because our kids need people like them who see their beauty and worth and treat them accordingly.img_2824

The third experience was meeting up with one of my husband’s best friends from High School. They, like us, have one boy and one girl with the boy having autism. We’ve known many children with autism and while D has enjoyed playing with them I have never seen him connect with another child the way he did with this young man. After dinner, the boys rode in our car back to Grandma’s while the girls rode in the other car. Listening to the two boys in the back of the car nearly brought me to tears! They understood each other on a level no one has understood D before. They “scripted” together (reciting movies line for line), enjoying every minute. img_2822D told him of what he someday dreams of doing and the young man thought his plans were awesome. I could kick myself for not having spent more time with this family over the years. The girls had a great time too, but listening to those boys in the car was something I wasn’t sure D would ever find. That was truly special.

Vacations and getting out of our bubble can be really hard for families of Special Needs kids. But in spite of everything, it can also be really worth it.

Hats off to the Moms of Young Children

img_2827Occasionally we have been watching a set of twin 8-month-old boys. I like doing it because, one,  I just plain LOVE babies, and two, it also helps my children who don’t have younger siblings around learn how to care for them. (This week I made R change her first diaper.😉)

A couple weeks ago we had them for a lot of the weekend. They went home at night but would be with us during the day. Sunday made me remember just how hard being a Mom of young children really is. Luckily church wasn’t until 1 pm or we would have NEVER made it out the door. I thought I was doing really well. I loaded up the van with my two kids, Charlie (D’s service dog), the twins in their car seats, and the double stroller that I couldn’t for the life of me figure out how to collapse. Luckily I had one of the seats in the van folded down in the floor already so I ever so carefully smashed, wiggled and worked the stroller into the van fully upright. Success! img_2828

We drove to church, and I was pretty proud of myself. Only a few minutes late! I got the stroller out (much easier than putting it in!) and put the boys in. My kids and the dog got out and we walked into the church. (I felt a bit like I was leading a circus….)

We sit down, and I suddenly realize I don’t have a diaper bag!😩 I quickly asked a friend to watch the kids while I ran back home to get it. I got back just in time to see R just a little frazzled as she tried to keep both the babies from crying.img_2826  I sit down and take over.

We get both the babies happy, and one of them starts to laugh, which in turn makes my kids laugh, which makes the other baby laugh. After watching this being repeated multiple times (to my secret amusement), I tried desperately to get my kids to stop laughing. We left the chapel and sat on the floor of the foyer and let the babies crawl around. They LOVED that.

Suddenly it dawned on me that although I had the diaper bag, the formula was in the other bag, which was STILL AT HOME!

The main meeting was almost over so I waited until then and got my children off to class. I left the stroller there, I wasn’t going to try and put it back in my car just to drive home (AGAIN) and back. I took the babies and got their car seats buckled in the car, and again drove home to get the formula. I would have probably gone home for good after the main meeting at this point, except that I had agreed to teach a lesson during the last hour of church. Yes, I know. I’m a glutton for punishment.

I now head back to church for the 3rd time that morning and I am completely frazzled. I found some women to watch the twins while I taught the lesson. (Only after I had accidentally dumped the entire contents of the container of formula out on the floor.) Their Mom walked in in the middle of my lesson and I was SO happy to see her! I had forgotten how crazy it is with little ones, particularly at church.

img_2825-1So my hat goes off to all mother’s of young children. May you find people who will help you through this time when you really think you’d be better off staying home from church. May you find the courage, faith, and patience to keep coming every week. I promise it does get better. And a shout out to the angels who helped me along the way when mine were little.

Can We Get Off This Merry Go Round Now?

Another doctor… Another test… We are lucky, we know D’s primary diagnosis- Autism. Unfortunately, it also comes with many other coocuring issues. We have been looking for answers about his sleeping issues for years, and I was severely frustrated the last visit we had with the sleep doctor, when they said again, we don’t know what’s going on. Try these things. (We’ve been doing those things for years!). This particular type of doctor we have now seen 3 different ones this year. We saw a pregnant LNP the first time and then because she was out with her baby, we saw a different LNP. The second one seemed to really listen and was able to see Daniel sleeping in action. He wouldn’t wake up for her in the office. She recognized that this was a severe problem and referred us on our next visit to one of the two heads of the clinic- a doctor this time.

img_2660Once again the tests didn’t show anything wrong except that he isn’t getting enough sleep at night, in spite of being in bed from 8 pm- 7 am and giving him medication to sleep. The doctor I felt was really blowing us off because they weren’t able to find anything wrong, gave us suggestions we have been using for years, sent us home and said come back and see us in the fall. 

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Can I tell you the rage I felt at that moment? This child has missed tons of school because I can’t get him to wake up and get him to school and even once I do, he’s falling asleep in class on the cold hard floor in spite of all the noise and his teacher can’t wake him. We are usually extremely vigilant about getting him to bed on time. He wants to go to bed. He knows how important it is to get sleep as he always feels tired.

I want some help dammit! Instead, I’m left feeling helpless and like we just wasted all this time out of school and money once again trying to find answers. It is frustrating and very disruptive for him because it’s not just his sleep. It’s learning he’s missing out on, it’s his ability to handle and control stress, it’s his ability to function.

I say we are lucky and we are. I have friends whose children have mysterious symptoms and they and the doctors have no clue what is going on and it’s life threatening. This part has been surprising to me just how common it is for families to be fighting for answers. You think, “We have all these medical advances. Why can’t they figure what is going on with my child?” The truth is that the human body is still very much a mystery.

So we will continue going around and around on this merry go round, talking to one doctor and then the next, one test and then another. Praying that at some point we can stop doing tests, and finally have some answers that will help.