Brothers and Sisters

Lathom has grown up with a sister who is 4 years his senior and an ever-present part of his life. He dearly loves her – to the point that he weeps when he tells me he misses her. And there are often times she has to console him when she calls him to see how he is doing.  Lathom also has two older siblings: Melinda and Wade.  I didn’t expect them to be a big part of Lathom’s life, since they had their own families and children to focus on while Lathom was growing up. They are actually his half-siblings (my step-children), but in his heart there is no such distinction. While they came into my life as young teenagers, it was not until Lathom was born that I realized and understood the capacity of their hearts.

I do not recall advising or coaching them on how to handle or behave around Lathom. They asked questions, as everyone does; but the application of knowledge gained speaks to the connection that they share with Lathom. When Melinda and Wade were able to come visit, the lack of direct contact didn’t seem to matter; they just seemed to “get it”. They were direct, but kind; they never raised their voices when they were with him; they always treated him like a typical kid, knowing he wasn’t. Melinda and Wade simply treated him like a little brother.

Everyday I count myself fortunate and blessed that God graced Lathom with siblings that care for and love him with hearts and souls bigger than I could have imagined. The fact that he has a sister, just a few years older than he who will be his guardian someday, who absolutely loves and adores him, and who will not let him get by with anything, gives me hope that Lathom will always have someone making sure he is “ok”. And the fact that Megan and Lathom have two older siblings, Melinda and Wade, whose support is available and who will step in to help their younger sister and brother to the best of their ability means everything to me.


Fathers, Sons, Brothers, Uncles

L with his dad, older brother and his 3 uncles.


Autism is not Age Appropriate

My son will be 25 this fall. He has a man’s body, a boy’s intelligence and a child’s emotions; and yet none of it goes together. He does well with schedules at his group home and day programs because they provide him with consistency and lessen anxiety. But sometimes I will purposely deviate slightly from the schedule just to see if he can handle some spontaneity. Sometimes he goes with the flow, which indicates maturity, and sometimes he doesn’t, which means we are back to where we started.

He has shown great improvement, slowly but surely, but there are still some things we can’t seem to let go- his animals and planes. He has been fascinated with airplanes and helicopters since he was a toddler and knows a lot about them. WWII and commercial aircraft are his favorites and I have learned more than I have ever wanted to learn about these flying machines. His stuffed animals are Disney characters (usually of the feline or canine variety) that he talks to and sleeps with at night. They seem to offer comfort in an otherwise confusing and abrasive world. They are also his “alter egos” with whom he shares his frustrations; and when he has no one else, they are his friends.

When Lathom goes to his day program he can bring one animal in his backpack and take it out when he is on a break. It is good that he is learning there are times the animals can be present and when they need to be put away. When we run errands or go out to eat, I let him take one aircraft and one animal with him because, well, I’ve learned to pick my battles. But I will never forget how his grandmother (my mother) and his dad (my husband) would cringe when I let him do this because they said it was not age appropriate. And they were right, it’s not. But autism is not always age appropriate.

This last weekend I took him on a short vacation and something occurred to me: those age-inappropriate accessories offer a protection from possible harsh words and insight to others that do not understand his disability. One of my friends who has a child with Down Syndrome always said her child “wore” her disability, meaning it was immediately recognized. That makes perfect sense to me because Lathom does not wear his autism. He just looks kind of “nerdy” and acts differently or “weird”. Most people were very defensive when he approached them to say hello while walking on the beach this weekend; that is, until they saw him holding a stuffed animal and an airplane. His “age inappropriateness” saved him and most of those around him from unnecessary stares and awkward moments. I also noticed that people would take time to be kind, to visit with him, and just smile. It was a great weekend and another life lesson. Thank you Lathom, for once again teaching me and maybe a few others what is really important and what can be brushed off.

The End of a Long Day in the Life of Autism, Alzheimer’s and Aging.

Christmas will be here in a few weeks and I’m taking a moment to reflect. I am sitting at my mom’s breakfast table, drinking coffee and watching my son type “remote control helicopters” on my laptop.  At the age of 26 he is still learning and I am happy for that. I hope he can work or at least volunteer someday, contributing, giving something back to the community that helps support his care. He is usually a happy young man, but he still needs and depends on others to assist, direct and protect him, especially since he has the vulnerability of a child. He will never be fully independent, but he is at least starting to advocate for himself and others.

My friends, who also have young adults with disabilities, and I often visit about our hopes and dreams for our kids and who will be their caregiver(s) or overseer(s) when we are gone. It is a fear like no other. If our special needs kids/adults survive us, will they thrive or merely exist without our help, when left under the guardianship of someone else?

There are days when I wonder what would happen to my son and others who depend on me, if I died tomorrow? As I get older, the people whom I love and care for, occupy much of my time and make me wonder how they would do without me being a part of it. I know my daughter would have no choice, but to take over. I am not thinking about what my will specifies, but more of the hands on, day-to-day decisions that require more than an executor or overseer. How have my responsibilities affected my life and hers? That scenario sits in the back of my mind and raises its head often, but mostly when I am physically and emotionally exhausted. And I’ve noticed it happening more since I’ve injured my back and find I cannot do what I once did. I often become frustrated with myself that I have to take a step back. I appreciate when someone else steps into help me, but I still feel the guilt of not being the “perfect” mom, wife, or daughter.

Death is something none of us like to talk about, but it is a part of life. I accept and understand that my mom and husband, whom I love dearly, have already lived long and prosperous lives and are at the “evening” of life. Comfort for them is now my goal. My daughter is employed in a professional world and moving forward, for which I am very proud. She and her fiancee have many years to continue to enjoy their lives together and contribute to society. My son, however, is and will be dependent on the care he receives and at the mercy of others for the rest of his life… and that simply frightens me. My daughter understands that she will someday step in as his guardian to ensure he continues receiving the care he needs. But what will that do to her life, her family? Will it create a burden that she cannot handle or does not deserve?

My life has not been easy, but it has made me a stronger person. I am not afraid of taking on responsibility. But as a result of this, people also assume that I will just do what needs to be done and not ask for assistance from others when, in fact, I may really need it. The fact that I am “in control” communicates the wrong message many times. I need help and that is hard to admit and accept because it means I have to give up some of that control and let others make decisions that I may not always be comfortable with. I am trying, really trying. I must trust the nurses, doctors and caregivers who now help my husband with his day-to-day needs as I continue to try to provide emotional support and let him know I love him and want him to be safe. I must trust the doctors that work with my mom, trying to help relieve the excruciating pain she feels on a daily basis as I also offer emotional support and let her know I love her. I also pray that I have the strength to start letting go, to give my son the opportunity to be guided by others, hoping that they have his best interests at heart, thoughtfully guiding and leading him in a productive way with direction, compassion and diplomacy. And I pray as I take my last breath, whether it be tomorrow or years from now, that my daughter and future son-in-law will have the time, energy, love and space in their lives to include Lathom.


Almost Normal

Last month I received a message from my son’s case manager that one of the women who attends a day program and carpools with him; hit, scratched, and broke his glasses. My first concern was “Is he ok?” The answer was “yes.”  My next concern was “Did he strike back?” The answer was “no.”

This was a big step for Lathom. As much as we want him to defend and stand up for himself, we have been teaching non-violence and how to move away from someone who threatens him. This encourages problem-solving and keeping one’s emotions in control. The fact that he was in a van with other people from the day program and could not move away, and still managed to keep a cool head speaks volumes. I gave him his spare pair of glasses (I kept them for emergencies) and the group home personnel took him to the eye doctor for an exam and a new pair of glasses. They also  moved the woman who attacked him to a different van. He was still upset when he came home that weekend and proceeded to tell me, in his words, what had happened. I was amazed at his ability to recount clearly and deliberately what had occurred and he informed me that “[the woman] had bad behavior”. There was a maturity in his voice that had once been fleeting or non-existent.

A few days ago I received a message that another person who was sitting behind Lathom in the van hit him on the back of the head. Lathom was shaken up, but not seriously hurt. Again, he did not strike back. Lathom called me later and informed me in a very calm and straightforward voice what had happened and that “[the other person] had bad behavior and won’t be riding in my van anymore”.  Again, there was maturity in his voice.

Last week the day program informed me that Lathom had moved up to the next education level. They have embraced him with grace and understanding. They know that Lathom needs to feel safe and that even if he is out of control, he knows they are “calmly” in control and will redirect him with whatever patience necessary. They have also welcomed, worked with, listened to and used the techniques that a certified behavior therapist has demonstrated. This is Lathom’s 6th and best day program he has ever attended. They are truly a godsend for him and he continues to inspire me every day.

Will Lathom have bad behavior? Probably (nobody is perfect). Will he strike back if someone hits or kicks him again? We hope not, but cannot be sure. The key is applauding the good behavior and redirecting the bad. It is an ongoing process with someone on the autism spectrum and will always be two steps forward and one step back. So right now I will enjoy this moment of forward progression and appreciate the fact that Lathom continues to grow and improve at a pace that is almost normal.


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.



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 whom 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.


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.