Tag: autism

It’s a marathon, not a sprint

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For most people, raising children seems to be a very linear process; Preschool, grade school, high school, college, marriage and having their own children. We track success against very large milestones. For children living with a disability, it may not be possible to track against those milestones. We may never get to those phases of life. But that is ok, because life is a marathon not a sprint. 

Similar to most people living through this pandemic, I am currently working from home. I will admit I am not a fan. Even though this is not my ideal working situation it has given me a chance to hear almost everything that happens during the school day. There are days that Logan requires some help because his paraprofessional is not in our house with us, but for the most part he is very independent. The other day I was sitting in my room working, and I could hear the lesson that was happening in the living room. Time. Logan and his teacher were going over telling time on a clock. Typically this is a skill that would be learned in Kindergarten or First Grade. At first my thought was that he is really behind, but I quickly started to feel really proud. Logan was able to tell the teacher what time it was on each of the clocks. This was a big step. 

If you didn’t know Logan and his story, you may think he was really behind the average 18 year old. That is not the case, because this is a marathon, not a sprint. When you train for a marathon it is difficult. It takes hard work and dedication, and it is something that not everyone can do. When I was training for a half marathon it literally took blood, sweat and tears. Lots of tears, but I did it. It is the same for Logan. It takes so much more for him to learn how to tell time than your average student. I see how hard he has to work to do something we typically learn to do at five years old. But Logan has learned to overcome all of these obstacles at his pace. He trains everyday to learn how to do what we take for granted.

All the little accomplishments in life are part of our marathon. Sitting though haircuts, eating in restaurants, telling time. These are big milestones. HUGE. I remember cutting Logan’s hair in the living room when it would take days to finish a haircut. Now, Logan asks to go to the salon and he is happy to have a long conversation with the hairdresser. These milestones are all part of our marathon training, and I could not be more proud of the little things. Not everyone is on the same journey and we need to learn to be proud of who we are, no matter how our marathon training plan is different from others.

Into the Unknown

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I am a planner by nature. I like to know what is going to happen tomorrow, the next day and even ten years from now. With autism that is never the case and it is scary.

After Logan was diagnosed, our public school happened to start a preschool program. Logan was one of the first children to be enrolled in the program. It was an amazing opportunity because I was learning from the teachers and they were learning from Logan. Was it perfect? No, but we grew together over the next couple of years.

Logan was not potty trained when we started the preschool program. I was so frustrated because at 3 years old I thought for sure he would be completely trained. For Kyra, it just clicked and boom she was trained. She never wet the bed. It was amazing. Luckily for me, the preschool program helped train Logan. They knew exactly what to do with him and by four years old he was trained. He never really had an accident after that. 

While Logan was in preschool I began to realize that we are part of a team. Logan’s team. I will forever be the number one cheerleader for Logan’s team. It takes a full team to make this work and we will always need a team. Logan had his teachers, paraprofessionals, speech, occupational therapists and many more. We had to work together to figure out what works for Logan. Not everything worked. Some things worked better than others. We were constantly communicating so that I could continue the education at home.

Logan attended the preschool for 3 years. Over that time the little boy who didn’t speak started to talk. He used the bathroom by himself. There were so many little things that he started to do that were amazing to me. It seemed like we were moving mountains—little mountains, but they were mountains.

Everyday we are entering the unknown. I have no clue what to expect when we wake up each day. Will it be a good day? Will we be fixated on the ending of a movie that we can not control? Will we be obsessed with death? Will we not eat the foods that we have been eating for years? I never know what will happen, but I do know that it will be ok. We will have good days and bad days, but we have days and are lucky to wake up every day and accept our daily challenge. It’s not always easy, in fact there are more challenging days than easy days,but every day is full of growth and opportunity.

Hangry

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Red Robin…Yum!

Have you ever been so hungry it makes you angry? I have. It happens to me all the time. I stop what I am doing, get myself something to eat and then the problem is solved. This seems like a very easy problem to solve, but for someone who has a communication issue, this may be very difficult to do.

When Logan was little we avoided restaurants. I hated going out to eat because there was always a tantrum, we could hardly eat and it was all around just a terrible experience. I can’t tell you how many times I left a restaurant before our food was brought to the table. Once I realized how painful it was for all of us, we just stopped going out. This was hard for me since when Kyra was little she would sit for hours in a restaurant and was so well behaved. I couldn’t understand why Logan was behaving so badly. In my very naive eyes, he was just bad.

One day it just clicked. I started to realize that he was acting out because he was hungry. So hungry that he became angry. I guess you can say he was hangry. So I changed my behavior to help Logan learn to eat in restaurants. I started with pizzerias. I would call ahead, order a pizza for the dining room. It worked. We walked in, ordered drinks and then the pizza came. We continued only going to this type of restaurant for a while. After that we moved on to going to Friendly’s. We would walk in, get seated and I would immediately order Logan’s meal. He would be able to eat while we ordered and then be able to sit for a little longer each time. We did go for walks, a lot. Occasionally we still had to leave restaurants, but for the most part we made progress each time we went out to eat. Some restaurants are more difficult than others. Fancy restaurants seemed to give us the biggest issue. According to Logan, “the Outback” (Outback Steakhouse) is a fancy restaurant. In addition, loud restaurants were difficult to sit in.

Logan has adapted so well over the years. Recently, we were driving around to pick up packages at a bunch of stores and he said, “Hey Mom, I am hungry. How about we get some Red Robin?” This was actually a surprise to me. Of course I said yes. As we walked in he said, “Man, I really miss restaurants.” Who knew the little boy who would throw a fit every time we entered a restaurant would grow up to be a young man who misses going out to eat during a pandemic?

Patience was the key to our success. I would suggest bringing your child’s favorite snacks and other items to keep them busy while out. In addition, don’t expect anything to change overnight. Someone once told me, this is a marathon, not a sprint. 

Thanksgiving

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I love holidays. I love spending time with my family. I love food. Holidays are so much fun for me, or at least they were always fun. 

Enter Logan. Family, food, change, overstimulation. I didn’t understand how just one day that was a little different could cause so many issues. I didn’t understand why Logan had such a hard time with it. What’s not to love about Thanksgiving? Turns out, everything.

Do you want to know how I handled that in the beginning? I would leave. Pack the kids up, get in the car, and leave. I wouldn’t say goodbye to the rest of our family. I would just make my exit. I know what you’re: how could you leave before dessert and packing up leftovers? I left because it was the easy thing to do. It was easy for me and Logan, and it also made it easier for Kyra and Daniel. I never wanted to upset the apple cart or make a scene. So, we left. I would go home. The kids would go back to their normal everyday routine. I would make another meal that Logan would actually eat and life would be normal again.

I vividly remember one year Logan was acting up while at my sister’s.. It looked like he was fooling around, but he was struggling. It was loud, there were a lot of people, and we were inside. As a joke or maybe to tease him, someone had balled up napkins and was trying to get them in his mouth while he laid on the floor. I lost it. I was really upset. So in typical Beth fashion, we left. I don’t remember if we even made it to dinner that year. I never wanted to go to another family function ever again. All I wanted to do was protect my baby from the rest of the world. The world that didn’t understand who he was. I was scared for him and his future.

Fast forward to 2020. If you asked Logan what his favorite holiday is, he would say Christmas, then Easter and Thanksgiving. His favorite part of Thanksgiving is the turkey leg. Do we dread holidays anymore? Not really. Are holidays still difficult? Sometimes, but we look forward to them now.

Below is a list of things that have worked for us:

  1. Prepare, prepare, prepare – I don’t mean the food. I mean for what is going to happen on the day. For instance, “Logan, we are going to go to Baba and Dido’s around 2pm. Baba is making turkey and corn. Is there something you want for dessert?” This has helped a lot. Having a plan makes the day a little bit easier.
  2. Bring toys/video games/books – I learned early on that Logan is not going to want to play with everyone else’s toys.  He just doesn’t like them. Logan packs all this on his own now, but when he was younger I brought our entire house with us. It really helped.
  3. Food – Bring their favorites. If they don’t eat turkey, bring chicken nuggets. Whatever will make them feel more comfortable. We pack a snack bag for everywhere we go.
  4. Set expectations – I noticed that once we started giving Logan a timeframe or an expected time to leave he handled it much better and was able to manage until the time was up. When the time was up, it was time to leave.
  5. Know your child – I am now able to read Logan’s behaviors and know that our time is up. I try not to let it get to the point that we lose control of the situation.
  6. Let them know you are there for them – Take time for them. Let them know that you are there to listen and support as needed.
  7. Prepare family for what to expect – This may take years. Our entire family understands who Logan is and accepts that. It did take awhile, but our extended family is part of Logan’s huge support team. He loves his family and can’t wait to spend time with all of them. Even “Uncle No Fun” and “Aunt No Fun”!

I am looking forward to Thanksgiving next week, even if it will be a little less traditional! 

Around here, however, we don’t look backwards for very long. We keep moving forward, opening up new doors and doing new things… and curiosity keeps leading us down new paths – Walt Disney

Turkey Leg
Favorite Thanksgiving Food

Blank Stare

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Eye contact is so important in life. You make eye contact purposefully to ensure you are actively listening and paying attention. In the case of small children, eye contact is important because it is the only way you can communicate.

When Logan was born, he weighed six pounds and seven ounces. He was so tiny. All of the diapers we had were huge on him. When we left the hospital, Logan was dressed in a beautiful blue preemie size sleeper with a matching hat. I remember my mother going to the Birth Boutique to buy it because I didn’t have anything for him to wear home. In fact, I didn’t even have a car seat or stroller. My baby shower was scheduled for the weekend I was in the hospital on bed rest, so of course we had to cancel. My mother also ran to Toys R Us to get a car seat so that we could finally take Logan home. Logan grew at a normal rate. It seemed like he jumped from Size 3 months to 9 months in the blink of an eye.

Just like any other baby, Logan started to crawl, walk and then immediately run. He started to babble right on schedule. Until one day he just stopped babbling. In addition to that, I noticed that Logan often had a blank stare on his face. He would be sitting in his walker just staring. Our pediatrician didn’t seem to think this was a problem at all. In fact, he told me that his son didn’t start speaking until he was four. I felt a little better.

Blank Stare in Disney

The blank stare continued and eye contact became less and less frequent. Logan still wasn’t talking. It almost seemed like he couldn’t hear at times. As a new mom I became nervous. I don’t remember what I thought was wrong, but I do remember thinking this wasn’t right. Even the teachers at daycare would note that he was sitting and staring. Logan didn’t like to play with other children and would keep to himself. 

Back to the doctor we went. I was convinced something was wrong. The doctor finally gave me a referral for a hearing specialist and a neurologist. We never made it to the hearing specialist because I was able to make an appointment with the neurologist first.

Stay tuned for how our life got turned upside down…

Where do I begin?

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Married with a step-daughter and expecting my first child, I was so excited. But my pregnancy was a little bumpy. 

In February, I had my first ultrasound. I learned that the baby did not want to reveal their gender. And for the moment I was OK with that. Logan was due at the end of June 2002. In March, there was a heat wave, and I was dying. By April, I had started to gain excessive amounts of weight. At this point I decided I needed to know the gender. Call it mother’s intuition but I had a feeling something was wrong. During that ultrasound the doctor found what he thought were amniotic bands. Let the panic begin!). I was sent to specialists where we discovered that there were no bands, but that my uterus was split into two sections (In case I didn’t feel abnormal enough already, this confirmed it.). While we discovered that I was having a baby boy, we also found out that I had toxemia. In the beginning of May, I was hospitalized and put on bed rest. I was scheduled for a c-section, but my water broke.  

At the hospital, the doctor decided to wait until the morning to deliver my son, but when morning came, we found out that the rain overnight had flooded the surgical suite. It wasn’t until about 3:00pm when they rolled me into the suite. I was scared. I had no clue what was happening. I wasn’t prepared. I didn’t learn anything about what would happen. I was too young for a baby! But he was coming. 

They talked me through it, delivered my baby, took him away, and I went into recovery. Hours later I was able to go to my room where I proceeded to vomit. All over. Who knew that “Have a few ice chips” didn’t mean “Eat them all”? 

This is how our story began…