Author: lamlamayb

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. 

Siblings

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I grew up in a big family. I love it! To this day we still get together more often than most families do. I was always hoping for the same thing for my own family. Big family, lots of kids, instant best friends. I wanted my children to have all the wonderful memories that I have growing up. 

Kyra and Daniel have been through a lot as we all grew up together. Logan’s autism made some things difficult. We could never sit in a restaurant long. We could only see the movies Logan liked. We only watch the parts of movies that Logan wants to see. We eat what Logan likes. You get the point. Our world revolves around Logan at times.

Children who grow up with a sibling with autism can feel so many things. They can feel jealous of the amount of time you spend with the other child. They can feel discouraged because they don’t know how to play with their brother or sister. They can feel angry, protective, embarrassed and guilty. They can also be concerned about their future role. I have personally seen all of these emotions. I know how hard it is. Now that the kids are older we can speak more about it and work through some of the issues

Some things that seem to have worked for us are:

  • Setting aside special time each day to spend a little time with your child or children without autism. Even if it is just bath time. 
  • Listening to what your children have to say. It is important to validate how they feel.
  • Making time for special activities or trips. Daniel and I spend a lot of time driving to baseball games. I am going to miss that in a couple of years. Daniel and I also like to take trips to Five Guys for his favorite meal.
  • Trying to be fair. This isn’t always easy and we do have to make exceptions sometimes.
  • Taking them to family counseling. Sibling relationships are already challenging enough when everyone is neurotypical. , Sometimes it helps to talk to a person outside of the family.

Even though this has been really tough on Kyra and Daniel they are very supportive of Logan. They stick up for him. I am really proud of both of them. I know it was never easy. I have always told Daniel that God gave him to me for a reason. I needed him in my life. After having Logan I wasn’t ready for more children. I can tell you the story of Daniel another day. It’s a good one for sure.

Thankful, Grateful, Blessed

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On this Thanksgiving, I wanted to share what I am thankful for. This year has been hard! Between dealing with COVID in our home, virtual school, work from home, a missed first varsity baseball season and missing many other events we usually attend it was very difficult for the kids and for me as well. We can all look back at this year and think how terrible it is but right now, I am not going to do that. I am lucky that I have my wonderful family. It takes a village to raise children and I have the best village around. I am grateful that even though I have been locked in my room working, I am able to stop and help my children when they are stuck trying to learn virtually. I am fortunate enough to still have a job and continue to support my family the way they need. I am so happy I was able to watch my Daniel play baseball and continue to grow into the young man he has become. I am so proud to watch them both learn how to navigate the virtual world and check email every day which is something that we never knew they would have to do in high school. I am grateful for the friends and family supporting me as I ran my first half marathon by myself. I am thankful that everyone continues to be healthy. We are blessed to have delicious food on the table. Most of all I am thankful for the family and friends I have who have been in my life to listen to me, help me, support me and love me. I would not be the person I am today without everyone in my life. 

I hope everyone is having a wonderful Thanksgiving even if it is much different than last year!

The more you are in a state of gratitude, the more you will attract things to be grateful for.

Walt Disney

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

Diagnosis

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Have you ever had the feeling that you needed someone to be your ears? Someone who can listen when you know you aren’t going to be able to comprehend the truth? 

I scheduled our visit to the pediatric neurologist. I knew I needed my sister, Christine, to come with me. I can’t remember if she met me there or if we drove together, but I vividly remember being in that office together.

It was an extremely kid-friendly office. Bright colors, toys, everything you would expect in a pediatric doctor’s office. I remember being taken back to the room where the doctor just watched Logan. He talked to me and tried to interact with Logan as he played. The doctor asked me questions about Logan. Does he play with others? No. Does he smile at you? Not much. Does he repeat movements? Yes, he walks in circles. Does he get upset at loud noises? Yes. What about foods, does he have issues with them? Yes. The neurologist was able to observe that he didn’t respond to his name, talk, or make eye contact. The list went on and on. Is change difficult? No sense of danger. Obsessive. It was like he already knew Logan and yet he had just met him.

I can’t remember the exact words, but I do remember “on the autism spectrum.” I have to admit it’s a little foggy after that. There is no miracle drug. We should start early intervention and use ABA (Applied Behavior Analysis). My head was getting more unclear. The doctor scheduled a 24-hour EEG to rule out Landau Kleffner Syndrome. And then he said, “You should get genetic testing done in case you plan on having more children.” I looked at him and said, “I’m three months pregnant.” He just looked at me and said “Ok.” 

My world was forever changed. I asked when we had to come back and was told we don’t need to. There is no treatment they can give Logan.

I don’t remember much more of that day. I remember getting the documents in the mail weeks later. At that point I was able to read through them. We went for the 24-hour EEG and that ruled out Landau Kleffner, so it was definitely Autism. I felt lost. Most of all, I felt sad for my perfect little boy. He didn’t look like he had autism. He looked like every other toddler. It was so deceiving. People would see him throw a tantrum in the store and think he was just bad. I knew he wasn’t bad, just a misunderstood little boy. He continues to be a misunderstood young man, but he can now express himself.

I think this is a good time to point out that I am a planner.  I need to know exactly what is going to happen tomorrow and 30 years from now. I can’t fly by the seat of my pants. So how was I supposed to plan the rest of my life if I had no clue what all of this meant? I had never heard any of these words before. How do I fix this? Now that I look back, I know there was nothing to fix. We could only learn and grow, TOGETHER, and that is exactly what we have done. We grew up together. We’ve been through really bad times together, but we’ve had some really wonderful experiences as well. We have met some people who should never be able to work with children, but we have also met the most kind, gentle people who have cared for Logan and the rest of our family. I have said so many times that this could be so much worse and it really could be. We are blessed, we are loved, and we are lucky.

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…

Super cute, but why won’t you just sleep?

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My goodness Logan was a beautiful baby! You know, some babies come out looking like they’ve been through a rough delivery.  Not Logan! He was perfect. Perfect to me. I remember my dad saying, “Look at his toes and fingers! He must have been squished in there.” I thought nothing of that.  

He failed his first hearing test, but the nurse assured me that was normal.  He was a little jaundice so we kept him under a special light. It took him an hour to drink one bottle, and then he would projectile vomit the entire thing. All normal, right? Honestly, thinking back on it I will never really know. As a 24 year old new mom all I wanted was sleep.  I was exhausted, and my beautiful baby would not sleep. I don’t think he slept for three months (or at least that’s what it felt like). I would put him down and he would scream.  I would rock him for hours and I would fall asleep with him in my arms. Drive him in the car, you say? Oh no, he would scream bloody murder if you put him in the car seat.  I remember how painful it was just to go to the store with this sweet, beautiful, demon child. 

I cried. A lot. What was I doing wrong?  Why won’t he sleep? I remember calling my mother and crying because I was so tired. I am very lucky that my parents live so close because she was at my house 15 minutes later taking my kids to her house.  I think I slept for 30 minutes.  That’s it-just 30 minutes.  Then I got in my car and went to my parents house.  Why on earth would I not sleep longer? Of course it’s because I missed my kids! (Please note, I learned my lesson with the second baby). 

This continued for months.  One day my mother came over and Logan wasn’t sleeping. She walked over to his bassinet and put him on his belly. All the guidelines tell you not to do that. I may have panicked. Watched him sleep. But he slept, and inturn I could sleep. 

Fast forward 18 years. Do you think we sleep well in our house? Most nights we do. Some nights we take melatonin. Some nights Logan just needs to talk at 3am.  Some nights he gets up to watch a new Frozen short that came out at 3am. Would I like more sleep? Of course, but I wouldn’t change anything about Logan, because all of this makes him who he is.

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…