911, What’s your emergency?

Standing up for oneself is a very important part of growing up.  We develop confidence as we learn to advocate for what we believe is right in a very complex, dog-eat-dog world. Whether a toddler takes a toy that another toddler is playing with or an older sibling grabs a cookie from the hand of a much younger sibling, defending one’s honor starts at a very young age. I remember as a youngster that very often one would defend himself with his fists if someone made a snide remark or was just cruel. Boys and sometimes girls, would physically settle the bully issue until an adult would intervene or someone would finally give up.

Defending one’s honor can be a daunting task for a typical child, much less one that has limited or no language. We, as parents, do our best to teach our kids to do what is right and to solve their problems with words instead of fisticuffs.  But there will be times when we can’t protect them and they will fall victim to the slings and arrows of other children without such influence, known as a bully.  Kids with disabilities are especially vulnerable to bullying.

My son doesn’t understand sarcasm, most name calling, or even funny faces being made at him in a cruel way. He has been called filthy names and he knows how to repeat them, but doesn’t know what these cruel words mean. He has learned over time from people who care about him how to practice standing up for himself using  phrases such as, “I don’t like that” or “Back off” or “Leave me alone”.  My favorite is from when he was a little boy and he would say,”You’re not the boss of me!” I remember trying not to laugh out loud when he would say this so seriously in disagreement with something asked of him. And while he may not have understood the expression, he did understand that this series of words stopped someone from asking him to do something he did not want to do. As a parent I should have been upset at his disobedience, but I was proud at Lathom’s first attempt of self-advocacy.

Move ahead 15 years. Lathom has seen other individuals in group homes call 911 many times for different reasons -some justified, some not- but he has never attempted it himself  until recently. The first time he dialed 119 because he was upset about something that was not serious. The second time he was upset, he dialed 911 from our family home and got through to someone. I heard him talking on the phone and thought he was talking to his sister, who often coaches him on an issues, such as broken toys and misunderstandings with others. As I heard more of the conversation I realized that it was not his sister but some other woman, a 911-operator. When Lathom handed me the phone, the woman informed me that he had called but she could not understand what he was saying. I explained the situation and assured her that he was fine and I would talk to him. End of conversation.

The third and most recent 911 call was made by Lathom from his group home. One of the young men, also a resident, was angry at Lathom for not being totally quiet when he was talking to his mom on the phone in his room. Lathom was in his own room watching a movie with his door closed. When Lathom was sitting at the table eating jello a few minutes later, this young man hit him on the back of the head. Lathom did not strike back, which spoke volumes to me. Instead of telling the caregiver who did not have a clear view of what happened, he dialed 911 and said he had been hit. The operator understood him and dispatched the police, who questioned both young men and filed a report.

While it ended up being an uneventful situation, it was a good lesson for all involved. The caregiver and the group home organization learned that these people need constant attention so that if there is an altercation it can be handled immediately. The 911-operator and the responding officers learned that in a home of people with disabilities, sometimes the residents are capable of  acting more “normal” than expected. Lathom learned that when he speaks, he is heard.

HE ADVOCATED FOR HIMSELF AND HE DID IT CORRECTLY!  I am so proud of my son for standing up for himself and doing the right thing. He is learning one of the most important rights of  every individual, abled and disabled:  believe in yourself, stand up for yourself, and speak for yourself.

-K

 

Twenty-four; seven; 365

Did you know that April 2 is Autism Awareness Day? In fact, the entire month of April is dedicated to Autism Awareness, along with 20+ other causes calling for attention and awareness. But what about the rest of the year; the 364 other days or months besides April?

March 5-12th is Brain Awareness Week.

July is International Group B Strep Awareness Month.

November is National Alzheimer’s Month.

If more college students were aware of their brains during said awareness week, maybe better decisions would be made during Spring Break (observed during the same time period).

When I had Strep throat (not in July), I was very aware of it. And luckily, so was my doctor.

My point is this: Ask anyone who is affected by a brain, Strep throat, Alzheimer’s, or Autism if they are aware of it outside of the designated time period?  I’ve been aware of Autism for over 20 years now and Alzheimer’s for 3 years. It is a part of my everyday life.

When the waitstaff in a restaurant takes an active interest in what CD my little brother is listening to or what new plush chihuahua he has, it isn’t because  they are obligated or required; their heart just wants to know his.

When the neighbors listen to my dad (with Alzheimer’s) tell the same story for the third time or wait for him to find a dropped word, it isn’t because it’s November.  It is because they want to know him and hear what he has to say, no matter how long it takes.

Days and months devoted to awareness do not go unappreciated by any means; every little bit helps. But I think the way to really make a difference in someone’s life is to be aware of the individual, rather than what affects them. A simple “hello” will leave an impression that is felt 24/7/365.

M.

 

 

 

Autism and Alzheimer’s

I never thought I would have a child with a disability, esdnpecially Autism. It wasn’t in our family. It was very rare when I was expecting my children (1985-1990). I was healthy. I had prenatal testing to ensure that everything was ok when I was expecting my son. And then it happened. I’ve been dealing, coping and living with it ever since.

I never thought my husband would be diagnosed with Alzheimer’s. It wasn’t in his family. I thought he might have cancer or a heart attack, but not Alzheimer’s. And then it happened. And I’ve been dealing, coping and living with it for the last 6 years.

attributes, even though they move in different directions – L improving, his dad regressing.

1. L and his dad both experience a delay in processing information. I used to say something to L and count to 5 in my head before he would respond. I now do the same thing with his dad.

2. Writing a schedule or making sure L knows what’s next, lessens anxiety. It also works for his dad. They both even take the same medication for anxiety.

3. L and his dad are anxious meeting new people or being in new places: the more familiar, the better. Big parties, family reunions, and (heaven forbid) surprise parties are out of the picture for both of these guys.

4. There are still days when L has a meltdown, which is his nonverbal way of telling me he’s having a horrible day. His dad is following that same path.

And then there is the other side of the coin. As L continues to grow and gain skills, his dad is losing skills that so many of us take for granted on a daily basis.

1. L knows where Home Depot and Lowe’s are located and what products they sell. His dad 3. You shouldn’t ever assume to know the truth about someone. Addiction doesn’t always look like a drug-addled homeless person on the street, mental illness isn’t always apparent, pain does not always read across a person’s demeanor. Don’t judge people on the bits and pieces of them you can understand.

 L can tell you the exact location of these cookies in the store, including  aisle number, how far down the aisle, and which shelf (3rd) they’re on.

3. L asks if he can have snacks instead of taking what he wants. His dad is now hoarding and hiding food so no one else will eat it.

4. L has an acute sense of direction. Once he has been taken or driven somewhere, he can guide you, telling you which blinker to turn on, which lane to move in, since you will need to turn up here or exit. His dad has no idea, anymore, of where he is going or how to get there.

5. L used to run away. I dread the day when his dad will start wandering off.

I have spent the last 23 years thinking I was caring for, teaching, and preparing my son for a future to live to the best of his abilities, understanding he will always need some assistance. Little did I realize he was also teaching and preparing me to help his dad live to the best of his abilities during his last years with Alzheimer’s.  -K

Celebrating the New Year

This time of year brings back a memory of a time when we celebrated a renewal of life that is different than most. We had gone to visit relatives in East Texas for a few days. When we returned home I noticed L’s breathing was fast and shallow. I called our pediatrician who agreed to see him immediately. The minute she examined him she called the Children’s Hospital to admit him. He was diagnosed with RSV (Respiratory Syncytial Virus), an extremely contagious viral infection that is also known to cause SIDS (Sudden Infant Death Syndrome). He was put into isolation where we had to enter through 2 doors, clothed in sterile gowns and masks. His temperature soared to 105 degrees, but the staff worked to decrease his fever as quickly as possible. I watched as nurses and therapists pounded on L’s back to loosen the congestion in his lungs as well as giving him treatments with a nebulizer. This went on constantly for the next 24 hours. So much of what happened for the next several days was a blur as machines were beeping, people were constantly coming and going, taking vital signs, and treating this tiny boy who didn’t deserve to be in the hospital again. He got through it.

I was thankful when he was released a few days after New Year’s Day and we brought him home – weak, but breathing on his own and healing from another assault on his small and compromised body. I thought I would gradually forget this experience as the years passed, but it raises its head every year around this time. So the New Year is a bittersweet time for me. I celebrate – that as many problems as L has endured, he has stayed relatively healthy and never contracted a bronchial infection again.

And so, as I start a new year, I am grateful for bringing my son home 23 years ago, alive and well. That is a memory that I want to keep. -K

A Kind and Patient Heart

When my daughter was around 8, she had already experienced a world of nebulizers (for asthmatic symptoms), eye glasses for strabismus, different variations of therapy, and an array of medications for seizure control for her then 4 year old brother. He had only been diagnosed as developmentally delayed (Autism would not be diagnosed for another 3 years). She seemed to just take it in stride. It was part of her “normal” life. I was so overwhelmed with the exhausting schedule above and beyond taking care of 2 children, I had not taken the time to sit down with M and tell her what was happening to her little brother. Looking back I realize, I, myself, really didn’t know. No one knew. We were following doctors’ orders and had no idea what the next day would bring. With that said, we continued to live as a normal family: attending gatherings, having others in our home, and going on vacations; as, with, and like a family.

One of our favorite places to go was a resort on Mustang Island near Corpus Christi. We stayed in a condominium, enjoyed the beach and swam in one of the largest pools in Texas. M loved to swim and was like a fish in water. She always met new friends at the pool. On one particular trip I noticed her watching a boy with a tube in his nose that was connected to a tank on a float, being pulled around by his dad. Others were also watching and seemed to give the pair plenty of room. They were alone in a sea of swimmers until my little girl approached them. She introduced herself and asked the dad if she could pull his son around. The man was very defensive and immediately refused. M, being the persistent child, told him she  thought his son would like to have a friend and she had a little brother with medical problems. The expression on the man’s face softened as he handed her the rope to the float. M took it and started talking to the little boy, as she easily pulled him around the pool on his float. She smiled and giggled. He smiled and giggled. All of a sudden other kids approached the once isolated float and asked if they could help pull him around the pool. The little boy with the tube in his nose, lying on his float, was no longer alone, but surrounded by a sea of laughing and accepting children.

I will never forget that day. My daughter understood the gift of life and what  happens – good or bad – better than I could ever explain. She taught me to accept life one day at a time, to move forward, to appreciate each moment and to cherish and love my children – for each is special in their own way.

K

“You have to be ‘THIS TALL’ to ride Space Mountain.”

My mom and I went to Disney World when I was five years old.

It was dark and I was still in my pajamas when we left the house for the airport. On our way, we got a flat tire. While my dad changed the tire, my mom seized the opportunity to change my PJs for daytime clothes (she wastes no time). My dad dropped us off at the airport and mom and I had to run.  My mom was, is, and always will be an athletic individual that ran track in high school and never slowed down for anything. I was FIVE.

I kept up. Mom kept track, until the escalator. She took off climbing those moving steps like a hurdler in a 1000-meter dash! I stood at the bottom, in awe and bewilderment as to who was going to hold my hand while I rode the most terrifying ride in my little life. “C’mon! Just hold onto the rail and step out!” My response: “I don’t think so.” A woman, a stranger, walked up beside me and asked if I needed help. I said something to the affect of: I am here, my mom is there, I need to close that gap. She held my hand and ensured my safe journey up the escalator to my waiting mother. That 15 second escalator ride at Austin-Mueller airport was my first “roller coaster.”  There was no height restriction, no safety harness, my mom was waiting for me at the end, but I still needed someone to hold my hand.

We made our flight and landed in sunny Orlando. Everything was amazing! Everything was perfect from the train we took to the hotel, the Mickey Mouse pancakes, the tangible cartoon characters who signed autographs, and the coolest space museum in a mountain. It was ‘SO COOL’ that I barely passed the height requirement to enter (to be honest, I was about an inch too short). My mom and I had never heard of a museum with a height requirement, so this was going to be pretty special. Famous Last Words.

My mom, my hero, the bad-ass, is terrified of roller coasters.  We had found ourselves in a line for Space Mountain with no escape. This was my mom’s ‘escalator’ moment. I climbed in the front seat and she took the one behind me. It lasted all of 2 and a half minutes and my mother screamed all of 2 minutes.  The ride came to an end and we had survived.

As I got older I came to realize that it is much easier to be brave for someone else, regardless of height restrictions.  I found it second nature to be my little brother’s protector in the ball pit of the playground. If a friend was in distress, I wanted to do everything I could to solve their problems. After surviving Space Mountain, all I could think about was holding my mom’s hand (not to be confused with her holding mine).  I wanted to be brave for her.  In being that older sister, that problem solver, that holder of hands, I found my own issues put into perspective and I was able to be brave for others while learning to be brave for myself.

When someone is about to step onto an escalator, board a roller coaster, say ‘hello’ to a love,  or ‘goodbye’ to the same, be strong for them. As you affect others, be ready for others to affect you. Hold their hand, offer a shoulder, BE BRAVE.

M.

Lathom’s Birthday

My little brother has been asking me if I am coming home for his birthday since June. He has done this ever since I moved out of the house 7 years ago. I have learned to tell him “Maybe,” regardless of whether I can come home or not.

There was a year that I said that I was coming home for his birthday. He asked me every single time he talked to me, from late May (after my own birthday) until late October, if I was coming home for his birthday in November. I told him yes. I told him that I was coming home, without consulting my work or school schedule, in an effort to pacify what I thought was a simple mind. I soon learned that while the mind might operate at a different pace, the heart compensates.

I called on November 9th. I told my mom how sorry I was that I couldn’t make it. I told her how I had to study for exams, how I had to work, etc. She understood, as a mother of a college student does. She then asked the inevitable question: “Do you want to talk to your brother?”

I said, “Sure.”

He was not happy. He was upset. He was sad. He was betrayed. His sister had told him that she was coming home for his birthday and she was not there. She had lied. Autism does not understand lying. Autism does not understand betrayal. Autism translates these things as anger and sadness.  But with the most basic of emotions comes the greatest opportunity for them to overtake and overwhelm the one feeling them. He yelled at me over the phone. I apologized, trying to say I’d come home soon. He didn’t want to hear it. He wanted to hear that I was on my way. He wanted to know that I’d be there soon.

I came home the next weekend. I couldn’t bear the guilt of betraying and lying to my brother that I was coming home and not following through. I pulled up in the drive way and he opened my door for me. Apparently he had been waiting on the porch since I called our mom to tell her that I was leaving Dallas (4 hours away). All betrayal was forgotten. All lies were like they never happened. The only thing he wanted to know was if I had brought him the right airplane.

I rolled my eyes thinking “All this kid thinks about is what present he is going to get!” But what I realized is that all he wanted was his family around him for his birthday. Sure, the cake is great (chocolate chip cookie cake) and the presents are a must (thanks mom for the 650+ piece Lego airplane), but what makes it all ‘make sense’ in his heart is the presence of his family; because we are the ones that bear the anger and the sadness without reproach, but delight in the happiness and glee of a heart bigger than what we understand.

Happy Birthday Lathom

M.