Last year, a student in our church ward needed to interview the parent of a special needs child for one of her college courses. Although some of the information is repeated from other posts, I thought I would share with you the responses I gave to her.
What is a normal day like with Luke?
There is no such thing as a, “normal,” day with Luke. Every day brings new challenges, new surprises, new frustrations, new accomplishments. He has some scheduled things like speech and occupational therapy two days per week. We have a therapist who also works with him at home one day and he is gone with her for a couple hours four days each week. He cannot be left alone – ever. At times, we have hired people to come to our home and just be with him to make sure he doesn’t break things. He is much happier and easier to handle when someone is giving him attention. Getting bored is the worst; that is when he is most creative in his methods of getting attention.
What is the biggest challenge?
I don’t know how to narrow down, so I’ll list a few, and you can pick how much to share:
1 – Enormous amount of messes that cause extreme frustration and expense to fix and/or replace things
2 – Family cannot do things together anymore.
3 – Obviously, the frustration of not being able to communicate.
4 – Erratic sleeping causes stress, fatigue and exhaustion for everyone.
Giving Luke the constant attention he needs while trying to meet the needs of my other five children. He will make a mess if he has the opportunity, and that has made it very hard to balance life. He throws things in the canal (sprinkler parts, toys, clothes, cats, anything he can get his hands on), dumps out containers (pours ketchup on his stuffed animals every day this week, bleach in the carpet many times, bubbles, dish soap, milk, really anything he can get his hands on), he has ruined every doorknob in the house at least once, holes in the walls, picked the paint off his bedroom wall and the wallpaper off the office walls, chewed up the steering wheel in the minivan. And that is just a small sampling.
We used to have at least one family trip to Yellowstone every year. We stayed in a hotel and spent a weekend together. We cannot go anywhere overnight with Luke because he has such sensory issues. We took him to a hotel several years ago. He just screamed and screamed. When we couldn’t calm him, I finally slept in the van with him. The next day, everyone else went to play, and I stayed at the hotel with him. Exhausted from the terrible evening before, I put a show on for him, locked the door, dead bolted it and used the chain lock that was beyond his reach. Then, confident that I had him safely contained, I went to sleep. An hour later, I woke up to discover he had pushed a couch in front of the door, climbed up on it to reach the chain lock, unlocked the door, gone down three flights of stairs, found the door to the parking lot, found our van and climbed in. He was four at the time. We have not taken him out of town since then. When we have family reunions, someone has to stay home with him. We have a reunion in MN this month. John can’t go because someone has to be with Luke.
Luke has echolalia, and that is his primary form of communication. He can only say things he has heard spoken. This makes it so hard to understand what is upsetting him. Tonight, for example, he literally screamed for three hours straight. I cannot understand how to help him calm down, or even what he is upset about. When responding to, “What’s wrong?” his answers included, “Let’s go buy a vacuum at the store,” “Are you upset about the horses?,” “Daddy will fix the sprinklers,” “Diane will bring the play doh on Monday,” and “Jesus died for us.” Hmmm……How am I supposed to fix all that?
Luke cannot sleep without medication for more than two or three hours. We use melatonin to help him go to sleep, and clonidine to help him stay asleep. He still wakes up frequently and moves around a lot. This has improved significantly over the past month. We just pray it continues …..
What are some blessings that come from Luke’s Autism?
I am a much better Mom for my younger kids since having Luke. I am much more aware of the little accomplishments they have and the developmental milestones they make. I have taken some parenting classes and know how to discipline more effectively.
I have become a more humble person. I was always a “strong” person, but I have become weak and vulnerable through the experiences over the past few years. I have developed depression that makes it very hard to even want to get out of bed and handle the day. This has all combined to teach me compassion for others who suffer from mental disorders and to be more willing to accept the love and service others offer. This has, in turn, helped me to be much less judgmental. Women in our ward whom I have known my entire life, but never really liked or thought much about, have given me so very much. I am humbled and embarrassed to have been so wrong in assumptions I made about them.
I always loved music, but Luke’s autism has made me appreciate it even more. As I mentioned earlier, Luke cannot talk much on his own. But he can SING!! He knows the words to so many songs and articulates them perfectly. It is truly incredible to hear him sing the words to primary songs with perfect clarity, and it somehow drives their message home so strongly when it comes from such an innocent, perfect soul who cannot express himself in his own words, but can bring the spirit so quickly in with the words in music.
Humor really is the best medicine. I love trying to see the humorous side of Luke’s random behaviors. It is amazing how much things really are funny if you choose to see it that way. Sharing his adventures in a humorous way with others is therapeutic to my soul and helps me stave off bouts of depression.
I have also developed an appreciation of the love that God has for every child on earth. Luke literally drives me to the brink of insanity some days. But I love him so very much it hurts me to watch him struggle. I would give anything to understand his world and what it is like to be in his place. Luke has regressive autism. He was born and developed normally until age 2 when he quickly lost his ability to speak. I will never forget watching helplessly as the little boy I knew was being sucked out of his little body. He was screaming uncontrollably and the fear in his eyes will haunt me forever, and I could do nothing to make it better. I think of the pain that our Heavenly Father must have had as he watched his son suffer and lose his life, and I appreciate just a little more how exquisitely painful that must have been. The difference is that he could have stopped it; he could have saved his son, but he didn’t. He turned away from the child he loved so much because he loved me and you enough to allow the pain and suffering to continue.
How do you help Luke with his autism?
We try to provide a supporting environment. He needs structure and does much better with no chaos. Obviously with six children, the home is not highly structured and calm, so grandparents and therapists have helped provide that for him. We take him to five therapy appointments every week. He also sees a naturalistic chiropractor once per week who offers advice on natural treatment options for him and does exercises with him to help stimulate and make connections in weak areas of his brain. We do exercises at home for him. We have tested him for food sensitivities and have him on an intense diet, free from any food that caused an increased IgG or IgE antibody response. He is currently off of dairy, gluten, soy, chicken, eggs, peanuts, peas, and a number of other less common items. Obviously this makes dinner time a huge challenge as we must prepare his meal separately and feed him before the rest of the family. As I mentioned earlier, we try to keep somebody physically with him at all times.