Wave Goodbye

 

I can still remember Cody’s little head barely visible in the school bus window as the bus monitor buckled him in with his harness when he first started school. He was so tiny, so fragile to me then. In order to lessen his anxiety and probably mine, I stood at the end of the driveway and waved goodbye every morning – rain, sunshine, or snow – until the bus disappeared down the street. What started out as a way to calm his anxiety when he began Head Start, became a daily routine that lasted until he graduated from elementary school. What I discovered during that time was that Cody was not the only child who needed to be acknowledged. Many of the other kids looked for me when the bus pulled up and waved to me as the bus pulled away day after day. It became a ritual for us all. Just the simple gesture of waving, just the few minutes it took to do so, was a way to say to my son as well as the other children, “I see you. You are important enough for me to stop what I am doing and acknowledge you.” So many times, I saw other parents rush to put their children on the bus and never look back. They didn’t stop for even a second to wave to their child. This was interesting to me because no matter how much of a hurry they were in, they could not leave until the bus left anyway. I believe sometimes we get so caught up in what we have to do next, the never-ending list of things we have to do each day, that we forget to stand in the moment and see what’s right in front of us. I have done it. I have forgotten to wave to Cody because I was in a hurry, or I was distracted by the garbage can that needed to be brought up the driveway, or I was just too tired to remember. But, when my son got home, he reminded me that I had forgotten, and that devastated look said to me that I hadn’t just forgotten to wave, I had also forgotten him, and that was all the reminder I needed of the importance of staying in the moment. When he started sixth grade this year, everything about our routine changed. The bus no longer stopped in front of the house, and he no longer wanted me anywhere near him while he waited at the end of the street for it. I walked him to the bus stop the first day, and he was angry about it. I tried to wave to him from the door as he left to walk down the street, and he was having none of that either.  He didn’t need my reassurances anymore. It was harder for me to let him go than it was for him to let me go, but I had to do it. I’m glad that I took the time to acknowledge him for all the years that he allowed me to. We’ve got to take all the chances we can to let our children know how important and special they are before what we say and do is lost in the chaos created by the words and actions of others. Maybe just for today, you can brainstorm ideas on how you can pause in the moment and acknowledge your child, implement a few of those ideas, and see what happens! In the next post, I will discuss another way I take a moment each day to acknowledge my son while also sending him off with a positive message.

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Hello Again!

Wow! Where to begin! It has been nearly five years since I’ve posted on this blog and so much has happened.

I am happy to report that Cody is doing very well. He will be twelve years old next month! Twelve! Yowzer! He is in middle school now, and he is thriving!

I realized that in my last post I was beginning a new master’s degree program. I am happy to report that in 2014, I graduated with two master’s degrees – an MA in English and an MFA in creative writing. I started teaching undergraduate first-year writing courses after graduation, but because of budget cuts, I am no longer teaching. So, my focus is back on my first love: writing. Yay!

I will be posting here at least once a week to tell you more about our journey over the last five years and also to share our journey as we move forward into the tween/teen years. I hope that by sharing our experiences you will find something that will make your journey a little bit easier.

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It Sounded Good in Theory, but…

Let me preface this with a few things:

  • My son and I have been sick for nearly a week now. Our doctor said it was just allergies. I believed her.
  • Last week I started a new Master’s program full-time and a new job.
  • I have no idea what happened to Monday.

On Tuesday, I got Cody ready for school, put him on the bus, and then left for a meeting. I left the meeting just in time to pick him up from school and drive him an hour to his occupational therapy appointment. Once there I frantically tried to read some of the 150 pages I needed to have read for an assignment due today. It was 4:00 pm before I realized I hadn’t eaten since the night before. I had an hour-long drive to get home that would leave me with only half an hour to get Cody bathed, make his dinner, and administer his medication before I had to leave for a class that would last until 9:00 pm. So the big question was: Do I go through a drive-thru and risk being late for class? This might not seem like a big deal, but there are very strict rules about being late/missing a class (i.e. failing!). I opted for the drive-thru anyway.

When you are a single parent with a child on the spectrum, you face a lot of issues that many other parents might not. My son will not allow anyone else to do personal care for him (bathing and so on). Even though I have just hired a part-time nanny to watch him for the two nights I attend class, most of the responsibility still falls on me. When pursuing my dreams, I forget this sometimes. The miracle is, I skated through yesterday fairly unscathed.

Today, I got my son ready for school, put him on the bus, and then started on some projects for work. I had lofty goals for the day: finish reading the remaining 75 pages, write the corresponding two-page paper, delve more into my projects for work, all while my son was at school. I kept telling myself, “You got this!” Then the phone rang.

Cody’s teacher said he was complaining of an upset stomach, said he threw up in the bathroom, but she didn’t actually see him do it. All the way to his school, I rehearsed the talk I was going to have with him because I was sure he was faking it. He was perfectly fine this morning. Better than he’d been in a week. When I walked in the office, the receptionist whispered to me that he had thrown up three times in the ten minutes it took me to get there. He had vomit on his shirt, his shorts, and all over his shoes. I called the doctor.

We stopped by the house to change his clothes, and before I could get him out of the car, he started vomiting again. I grabbed him so he could finish in the yard. After I cleaned him (he even had it on his glasses, poor thing) and the car up, we made it to the doctor. He didn’t have a fever when the nurse first checked him, but five minutes later he started shaking uncontrollably. His temperature had spiked. End result: He has strep throat and a virus, apparently some bizarre hybrid illness that’s going around. So much for the allergies!

Here’s where things get tricky for a single parent with no family or friends nearby. How do you stop at the pharmacy to get your sick, vomiting child medicine? That’s one of those “Oh shit!” moments.

If there’s one thing I’m good at, it’s coming up with a solution. I called the pharmacy and it would be half an hour before Cody’s meds were done. He was agitated because he was so thirsty (dehydration according to the doctor), but he could only have Pedialyte per doctor’s order, no water or he would start vomiting again. I stopped at the little drug store in town and we ran in, picked up two bottles of Pedialyte, and ran out. One obstacle down without incident! Woohoo! I stopped at home and got him a cool glass of Pedialyte. When I called the pharmacy to check on the meds, they had only received one of the prescriptions electronically. So, I had to go there, pick up the one they had filled, give them the hard copy of the other prescription, and then drive around for half an hour while they filled it (oh, and mine, because I, too, am sick). The good news: they had a drive-thru I had forgotten about! Problem solved!

We got home, and I managed to care for him and get the 75 pages read. Once I put him to bed, I wrote the two page paper that was due. There was one small snag. I forgot to pick up something for me to eat. It’s a little late now. He’s asleep. So, I’m hungry, and I’ve still got 50 plus pages to read for an assignment due on Friday.

Starting a new job and a new Master’s program sounded really good in theory, but sometimes I’m reminded that following my dreams isn’t always dreamy. Despite the craziness, I love where I am in my life now. I’ve worked very hard to get here. And, for the first time in my life, in the midst of exhaustion and tears, I can still smile.

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Help Solve a Mystery

My son Cody, who has an Asperger’s diagnosis, has been regressing in several areas over the last year. The first thing I noticed was his handwriting. The first photo is from the beginning of last school year. The second photo is from a few weeks ago. I took him to the eye doctor thinking it may be his vision as he requires a new prescription every six months due to the deterioration of sight in his left eye. They said it was definitely not due to his eyesight. Then I met with his teacher this week on another matter, and she told me his coloring is atrocious. This was shocking. If you look a few posts back, you will see examples of the amazing art he was creating just a couple of months ago. Also noticeable are the loss of his ability to spell even the most basic words, and the loss of his ability to do simple addition and subtraction. This is so troubling because he has been an excellent speller since age three and has been doing addition and subtraction since that age, too. When he was 18 months, he experienced a regression that left him unable to walk and talk even though he was doing both by ten months. He never fully recovered from the regression, but has made tremendous progress including gaining back his speech and ability to walk though he does have to wear orthotics. I am really concerned something like that is going to happen again.

You might wonder why I’m sharing this with you rather than a doctor. Well, I have shared this with his doctor and she has told me to ask another doctor and so the circle begins. This is typical of Cody’s doctors as none of them have a clue what to do with him. I have always had to figure things out on my own and that is why I’m sharing this with you and asking for your help.

Have you ever seen anything like this before? Do you have any suggestions on what it might be? For those of you who have children on the spectrum, is this a common occurrence? I thought he should see a neurologist, but his primary thinks he should go back to his psychiatrist. If this were your child, what doctor would you take her or him to?

I would really appreciate it if you would pass this post along so that maybe someone will see it and can help me figure out what steps to take to get my son to the right doctor rather than traveling around the usual circle without ever getting an answer.

Thank you!

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How to Write a Book: Instructions from a Seven Year Old

I am a writer…or at least I like to say that I am. I haven’t written anything of value in a while. However, my seven-year-old son, Cody, actually IS a writer. He doesn’t identify himself as a writer. He doesn’t need to. He just writes. When I tried to explain to him that I am taking classes to learn how to write books he replied:

“That doesn’t make any sense. Writing books is easy. I can teach you. All you have to do is come up with an idea, get some paper, staple it together, and then write it down. Duh!”

He knows what he’s talking about. He writes and illustrates a book a week. Yep, a book a week. I’ve been trying to write a book for three years. I have nothing.

I was already feeling quite crappy about my lack of writing when tonight he tells me, “I write poetry on the bus.”

“You do what?”

“I write poetry on the bus. It makes me feel better.”

“Can I see it?”

“I put them in my notes on my iPod Touch. But I’m not done with them yet.”

Apparently he knows about first drafts and revisions. Go figure!

Here are two of his poems exactly as he typed them:

School. Is. My
Favorite place. Better. At
home. Than. School. I
love. My. Mom. And. My.
Brother. I. Miss. My.
Mom. And. Have. A.
Good. Time. But. Just.
Remember. School. Is. A.
Great. Place. To. Be. So
you. Can. Learn

217. Is. My. Bus. To.
School.
I. Love. My. Bus
It’s. even. Funner. To.
Play. With. My. Bus.
Monitor

So, now I’m feeling really really crappy about my lack of writing. And, as if that wasn’t bad enough, he is also a budding photographer. Since I really want to learn photography, too, I’m feeling even worse. The picture above is one he took of himself with his iPod Touch. I still haven’t figured out how he took it, but I love it.

I hope I can be just like him when I grow up.

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Just Ask a Child

A while back, Cody’s occupational therapist told me that to help build Cody’s core strength I should tape large pieces of drawing paper to the walls and have him draw standing up. My landlord had just painted our apartment, so I knew taping paper to the walls wasn’t an option. I spent the next few weeks trying to figure out a solution. I searched for an easel, but the cost was beyond my budget. As I was putting the paper that his therapist gave me into storage, I told Cody that I couldn’t find a good place to put it up and would have to figure something else out.

His reply: “Why don’t you just put it on the fridge?”

Well…yeah…why don’t I?

We cleared his word magnets off the fridge door and placed the paper on it with magnets. It was perfect.

Why didn’t I think of that?

Next time I’m just going to ask Cody for a solution to a problem when I can’t come up with one.

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The Not So Good Days

 

I am always hesitant to talk about the not so good days. I don’t like to focus on the negative. But these kinds of days are part of my reality. I hope sharing them will help others who are going through the same thing not feel so alone and that it will also help those not going through it to better understand what these kinds of days are like. I often feel cheated when I read about others experiences with their special needs children and they never mention the bad days. I need to hear about them. I need to know that I am not alone in this. I need to know how others cope with the days that turn their world upside down.

Today was a great day! I found out late last night that I will most likely be getting my car back after I thought it was lost forever. Cody was so excited when he found out! We made it to his occupational therapy appointment and were so happy to tell his therapist he would be able to continue with her since I would be able to drive him after we lose our transportation there at the end of the month.

I made dinner for my two boys when we got home. I asked Cody to do something and then it happened.

“Don’t piss me off,” he yelled.

“If you don’t do what I ask, Cody, you cannot watch TV.”

He ran into the kitchen and overturned the garbage.

“That wasn’t very nice, Cody. You will have to clean that up,” I told him.

“No I don’t,” he screamed and then slammed the handle of the door into the wall several times trying to make a hole.

This is where things get tricky. I have to keep my emotions in check at all times and interact with him in a non-emotional manner. I reinforce what I’ve asked him to do while making him aware of the consequences for his behavior. Sometimes this works. Sometimes it doesn’t. Tonight it didn’t.

He began throwing things from the dining room table and then pulled the tablecloth off sending everything else crashing to the floor. He moved to the living room and threw his weighted vest at me and the TV remote and anything else he could get his hands on. Despite my best efforts, he broke a few of my things. When he gets really out of control (the police will not help, I’ve called them several times), I will go to my room and lock my door until he calms down. This works really well when I am here alone with him. But, my oldest son was here and Cody attacked him.

His aggression can be vicious. He punches, kicks, and if you try to stop him, he will bite you. It takes a lot of knowledge of how Cody does things when he’s angry to avoid being hurt. My oldest son has been out of this environment for a while and was unprepared. Cody injured his right thumb. We thought it was broken, but it’s looking like it might just be a strain.

I can handle most of these episodes, but when someone else gets hurt, it breaks my heart. I am not exactly sure why I am able to handle Cody’s violence better than other people. I believe it comes from growing up in a violent and volatile home as a child. There is also a part of me that believes I deserve this for some reason, that it is some form of punishment for something I did wrong, and that seems to make it easier for me to handle. I’ve watched Cody break my oldest son and my now ex-boyfriend. I wonder, sometimes, at what point he will break me.

 

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