A is for Autism, Alzheimer’s and Awful!

I used to love the letter “A”. I vividly remember learning to write letters and sentences in the first grade with Mrs. Counts. I can picture her standing at the blackboard writing “Make 3 apples”. I would copy her sentence, carefully making my “A” perfectly and then drawing 3 apples. I loved receiving “A’s” on my report card. They were much more important to me than conduct, which always stated, “needs improvement”! My daughter made straight “A’s” in school, but her conduct was also perfect. I was one lucky mom, but I digress.

I envied the kids whose last names started with “A”.  They got to be the first in line for everything! I was always near the end since my last name started with a “T”. Every once in awhile the teacher or coach would reverse the order and start with the letter “Z”, putting me a little closer to the front of the line.

Now that my children are out of school and my son has autism and his dad has Alzheimer’s, “A” no longer has the positive meaning it once had. As a matter of fact, “A” simply sucks at this time in my life. It is Awful, Absolutely Awful! And just as I start to feel sorry for myself, these words come to mind.

1. Airplanes: they saved my son in so many ways in the form of learning, redirecting, entertaining and socializing.

2. Advocacy: it saved me from giving up, but rather speaking up for those who have no voice in society.

3. Admission: we are not perfect and never will be, but that we are all blessed with a gift to make this world a better place.

4. Amen: how my son learned to end his prayers every night when we would say them together and ask God to watch over us and protect our family; how I thank God and how he ends my day and prepares me for another.

-K

Forgiveness

When my son was born, my life began to follow a very different path; some developmental milestones were met late, some never at all. While parents of neuro-typical children watch them grow, learn, make friends, attend school, and pursue an independent life, I have not.  My son will not follow that path – ever.  He may someday have a job, but it will most likely be voluntary or minimal hours, paying below minimum wage and probably with a job coach.  He won’t call to tell me that he got a promotion, only to say that he did not burn the chocolate chip cookies he was instructed to bake and NOT eat.  He will be disabled; while his body will age physically, his mind and emotions will max out at around 15 years old: a teenager for the rest of his life.

I used to be angry at God and doctors for handing me this child, this burden. I went through counseling, grief classes, support groups, reaching out and trying to understand how to cope, how to deal with this life sentence. I sincerely believe that God DOES give some us more than we can handle. But I also believe that God forgives us for our imperfections and gives us the ability to forgive others and ourselves for not being perfect. He bestowed these abilities on me through my son.

One of the gifts my son has given to me is just that: forgiveness. He forgives me for not being the perfect mother. He forgives me for being disappointed. He forgives me for not wanting to deal with his disability at times. He forgives me for not loving myself enough so I may love him freely for who he is, a child who was simply made differently. He loves me as his mom and I truly love him as my son. He has taught me to laugh at myself, to let go of things that do not matter and to understand that I can repair doors and walls that he has kicked in moments of anxiety.  I can replace material items, such as countless CD players and VCR’s,  that he has worn out before their time. However, he has also taught me that I cannot replace his heart and HIS joy being with the people who care for him and care about him.

He asks for so little and forgives so easily; something most people strive for on a daily basis. I am overjoyed that he has taught me to know and understand him, and to meet life with him each day as it is put before me – no more, no less.

K

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