If you know us at all, you know this year has been rough for Luke, at best. I have found myself grappling with self-doubt. Several times we have found ourselves in the sickening position of researching alternative living situations for Luke as his aggressive behaviors turned onto his younger siblings, leaving our sweet nine year-old in constant fight-or-flight mode – constantly looking for her escape route just in case Luke looks her way. The mere sound of approaching steps puts her into panicked flight. To help her cope and have some degree of normalcy, she spends most days with family, friends, or at work with me. (Yes, we are so lucky to have the most incredible support system!!)
Amid this ever increasing wave of physical aggression, Luke began telling us, “Does your tummy hurt?”
“Well, of course your tummy hurts; you never stop eating!”
His weight had ballooned to 220 lbs – quite overweight for his 5’7 body. Of course, increased appetite is a common side effect of several medications we have tried. So, we pretty much blamed the meds and puberty for his ever-increasing size.
Then the eating stopped. We thought it was just the flu or a little bug, but it persisted for weeks. And then the vomiting started. For a week, he lost almost everything that passed his lips, and is weight plummeted by well over 20 lbs. After an ER visit with no answers, my sweet nurse sister suggested that perhaps he has an ulcer.
Sweet Luke was so desperate for help with his tummy, he did not even fight staff when they put his IV in! Drawing blood used to be a seven-man endeavor, but he was willing to do whatever he could to feel better.
Fast forward two weeks with Pepcid and some changes to med dosages and timing, and suddenly our Luke seems to be returning to us!! Such joyful hope! Yes, it is too soon to know how long it will last, but we have had three wonderful days with only minor physical aggression. He has slowly started eating again, and his moods are so much more stable. He even happily went to a swim lesson this week! (More on that to come. )
Tonight as John was getting Luke ready for bed, he noticed that Luke has fingernails. He has literally NEVER had fingernails; he keeps them gnawed down to their nubs – always. I am taking this as a beautiful sign that maybe his anxiety is improving. Maybe it will keep improving! My teenage son happily suggested that maybe his friends can come upstairs again rather than smuggling them into the basement through the back door.
Luke’s lovely long nails!
Maybe. Just may be. . . .
Who knew that long, dirty fingernails could inspire so much hope?
“You know, we are often taught that the good Lord won’t give us more than we can handle, but that just isn’t true. Sometimes He does, and that’s why we have Psychiatry.”
We recently changed psychiatrists, and this was my favorite quote from today’s conversation with Dr. Denny. It is true that sometimes the hand we are dealt in this game of life just cannot win – at least in the way the world would define winning. The past year has definitely not felt like much winning was happening for Luke.
My sweet, mischievous, mess-making, frustrating, laugh-creating little boy was taken from me, replaced by a volatile, angry, sad, hurting teenager. I know, I know. I should not have expected that teenage hormones would leave him unscathed, but in my never-ending denial and optimism, I had sincerely hoped that the adolescent surge of testosterone would actually help chill our little wild child. After all, we have tried SO many medications that resulted in behaviors opposite their intended consequence, there was no reason that testosterone should not also stimulate atypical reactions. No such luck, however. So now we have a big boy, with the impulse control of a typical two year-old, who has suffered from waaaay too much change for his unstable emotions.
In my self-appointed role as arm-chair psychiatrist, I believe he now has a variation of reactive-attachment disorder. Covid ripped the carpet of stability right out from under his feet. Everything he trusted to keep his schedule anchored was suddenly gone. Then, as he began to get back to a semblance of routine, two of his favorite in-home therapists quit. He returned to school only to find his one-on-one interventionist, who was with him for three years, was gone now too. Aside from family, every person he has ever trusted has left him. He is sad and frustrated, confused and angry, volatile and increasingly violent.
Amid all of this, we have tried to maintain the stability of routine for him. Part of that routine is church on Sunday, which he definitely does not love, but he has tolerated it. We park our family on the back row – away from as many people as possible. He lays across the pew and buries his face in Dad’s lap. He frequently sleeps through the meeting. Last week, though, he became agitated during the service. He started biting my husband, so I quickly diverted my attention to him – trying to calm him and separate his teeth from John’s tie that was now choking him. My involvement further agitated Luke. He began vocalizing his discontent just as the congregation began singing the planned intermediate hymn. And so we wrestled on the pew to silence our son to the words and music of – Be Still My Soul – of course.
The irony of that situation prompted me to review the lyrics to, “Be Still My Soul,” as perhaps a message to our family. The first verse:
Be Still, my soul; the Lord is on thy side.
With patience bear thy cross of grief or pain.
Leave to thy God to order and provide;
In every change, he faithful will remain.
Be still, my soul: Thy best, thy heavenly Friend
Thru thorny ways leads to a joyful end.
(Hymn #124 from the Hymn book of The Church of Jesus Christ of Latter-day Saints)
Well, if nothing else, I definitely feel like we’ve got the “thorny ways” part of the Hymn going for us! But we have hope that we will eventually find a joyful end. Our hope is that a new medication will give us some peace.
P.S. I wrote this several weeks ago, then hesitated to publish it. We are still hoping for our Luke. Medications and side effects have affected his appetite drastically. He eats very little, is very nauseated and has very little energy, but that has made him easier to manage. We don’t know what is going on with his poor tummy. Last week’s ER visit yielded no answers. Next stop may be a GI specialist if cutting back on meds doesn’t help him feel better.
Birthdays used to be such a simple thing. We invited friends and family to celebrate. We baked and decorated cakes, sang a painfully out-of-tune version “Happy Birthday,” and opened presents. Birthdays past included piñatas, balloons, and other party games with friends.
Luke’s ability to cope with birthday chaos has fluctuated over the years with different aspects of the party tradition needing altered for him. Right now, however, he hates it all – balloons, presents, people, and singing.
We realized that singing was a problem as we celebrated Devon’s birthday a couple months ago – no big party with family and friends because we knew that would not go well for Luke. We just planned a simple dinner followed by cake and ice cream then presents. As we began singing, Luke flew into the room and began a full-scale assault of any person guilty of contributing to the chaotic rendition. This devolved into an epic wrestling match to safely get Luke settled down while avoiding bodily harm as he tried his best to rip our shirts, bite our arms, and kick. Unfortunately, this has become not just a daily occurrence, but often an hourly one. After a couple hours to chill out and allow the adrenaline to settle, we secretly reassembled in the kitchen. This time very quietly whispering the song, and silently blowing out candles while pantomiming our applause.
Devon’s silent applause for his silent birthday song and party. He is such a good sport!!
Fast forward to our fourteen year-old’s birthday yesterday. Determined not to surprise him with our noise, we prepped him all day for the pending mini-celebration. We ordered pizza for dinner and kept everything very small. We asked Luke’s permission to sing, Happy Birthday,” which was granted without hesitation. And yet, the result was the same. After only a couple lines, Luke came barreling in on a mission that would end the celebration as quickly as possible.
Thumbs up for the delicious cake my sister-in-law made to help make a chaotic day so much smoother – and tastier!
Birthdays are just one of a million little adaptations that Luke has brought into our lives. We are walking on egg shells pretty constantly as of late, struggling to figure out what could possibly help, or even better, prevent the constant physically aggressive behaviors that have left a pile a shredded shirts waiting to be patched or discarded, holes in the walls and furniture, and even a few skars – one a perfectly formed smiley-faced bite mark that I think I will name Bob. All the mood swings and volatility typical of teenagers, combined with his inability to communicate feelings and lack of impulse inhibition have combined to create the perfect puberty storm at our house.
Bob looked pretty angry initially, but he chilled out quickly!Now, my new friend just reminds me to keep all appendages clear of the mouth area!
And yet, amid all this chaos, when I picked up our nine year-old daughter from a party this week, she said, “Why do my friends all say, ‘I feel sorry for you,’ when I tell them about Luke? I mean, Luke can be mean sometimes, but I still love him! He’s my brother, and I’m not sorry about that!”
Luke hates taking pictures, so this one is a bit old, but this girl loves her her brother!
What more could I ask for than such a loving response? I can think of nothing. . . . Except maybe an idea for maneuvering next week’s birthday!?
Getting Luke back to church after doing church from home for a year was not an easy feat. At first, he wanted nothing to do with it at all and one of us stayed home and watched church with him. When we finally got him through the doors, he absolutely refused to go any further than the coat closet.
Now, when I say he refused, I don’t mean he refused in a defiant, rebellious short of way. I mean, he refused in a shaking, clammy-palmed, scared-to-death sort of way – the sort of way that any decent parent would not force a child to push through. And so we sat in the closet. Sunday after Sunday, we sat in the closet and listened from the foyer speaker. We sang the hymns (ok, maybe it was mostly me singing, but he did join in once in a while) in the closet and joined in prayer from the closet. We practiced greeting strangers and friends passing by from the closet.
After months of worshipping in our private closet ward, I decided it was time for the next baby step – back row of the chapel. The day I decided to try this brave step forward, we happened to have a package of Oreos that Luke found in the car on the way to church. “SWEET!” I thought; I’ll let him bring a couple in with him to help distract him from the move to the chapel.
We arrived early to ensure we could get seats on the coveted back row. As we entered, however, it was quickly evident that Luke was not thrilled with Mom’s idea – Oreos or not – but I urged him to try for a few minutes then we could retreat to the comfort of the closet. He did try. He tucked his head between his knees and quieted, but started shaking. I cuddled over him, trying to shield him from the sensory overload of the pre-church bustle. We made it through the opening song and prayer, but Luke was becoming more and more agitated, so I decided he had been pushed hard enough. It was time to leave.
“Luke, do you want to go out to the closet?” I whispered to minimize our disturbance to the congregation.
“Yes, yes.” He responded with his trademark high-pitched whine.
As we stood to make our inconspicuous exit, black, sticky crumbs poured to the floor. I looked down and realized that the Oreos had indeed helped him, not as a snack, but as a fidget of some sort. As he sat tucked down, he was writhing his hands together, mushing the white sticky cream into the pulverized black crumbs. His white shirt and black pants were covered, my skirt was smeared, his hands were still caked, although he had released their contents onto the floor. I just stood in shock over the huge mess for a moment before gaining the presence of mind to start scooping the mess out of the chapel carpet. There I knelt in front of the pew with two hands-full of crumbs and a boy on the verge of meltdown.
It was in this worried, embarrassed, crumby state that I heard the blessed words, “Can I help you?”
I looked up to see the kind face of Brother S. and uttered the first words that came to my mind, “I don’t even have any pockets.”
“Well I do,” He responded as he reached both of his hands out to me.
I filled his large, tender hands with my offering of Oreo mush and escaped to the bathroom with Luke close behind.
I don’t know how the rest of that mushy mess got cleaned up that day. I suspect neighboring members of the congregation probably helped. That’s the thing about church, no matter how messed up we are, the people around us always step up to make it better.
After that Sunday, we started bringing Bahr, Luke’s favorite, but very large, stuffed bear, with us to sacrament as a less messy alternative to Oreos. Luke did great with Bahr by his side for many weeks until one Sunday, in our rush to get to church, we forgot to grab Bahr. Luke still sat in our back-row seat, but he was making noises (verbal stimming) and seemed more agitated than usual. As she noticed this, the sweet sister next to me walked out for a few minutes and returned from her car with a white stuffed polar bear. She offered it to Luke, and he happily accepted. Tears of gratitude for such in-tune folks filled my eyes. It is truly humbling to receive such love.
Luke with Bahr, his emotional-support teddy bear.
Amid this kindness and generosity, Luke has slowly adjusted back to our routine of weekly attendance and he is no longer afraid to sit in the chapel or go to Sunday School with us. This is not to say, however, that he is completely free of less-than-desireable behaviors at church. In fact, in many ways he is a frightfully typical boy.
Just as Luke needs to sit in the same place during Sacrament meeting, he also has a self-assigned seat in Sunday School – in the front row. He takes up two or three seats and sprawls himself between my husband and me – John gets head and I get feet. We were thus positioned when Luke released a little toot of flatulence. We tried to ignore it, but Luke was completely entertained and started giggling. We hushed him, and with our most resolute face whispered that this WAS NOT funny. He slowly calmed and was down to just occasional minibursts of laughter when he rolled onto his side, lifted his leg and just let it rip! He was now engaging in a full-on giggle fest as I rushed him out the door and into the bathroom repeating, “We don’t gas in chuch!”
And so, we come to this morning. I would be attending without husband support today, so I needed a no-gas, no-behavior Sunday performance from him. He had been asking to make a cake for the past couple of days, so that became our bribe. And I will add this to my list of parent phrases I never thought I would utter, “Luke, I’ll help you make a cake after church if you don’t fart in Sunday School.”
Thankfully, Luke did earn his cake, and we had a great night baking, picking berries, and eating it together.
And I will go to church again next week knowing that we will be welcomed despite our messy, loud, and oft-times offensive state.
Luke and his sister chowing down the cake he earned.
A common quip that is often quoted among the autism community is, “If you’ve met one individual with autism, you’ve met one individual with autism,” meaning every individual is different; no single description applies accurately the entire group. This is absolutely accurate, but I am beginning to see that even within a single individual, autism will be expressed differently throughout life.
I feel like I have an entirely different son than I had at this time last year. My son used to be mischievous and silly. He frequently wreaked havoc on the house, was a constant flight risk, and changed moods on a dime. He was volatile and sensitive, but frequently joyful and loving too.
The new Luke is the polar opposite. Since March, he has withdrawn more and more. Initially, he started limiting interaction by holing up in the front room so that he could monitor the entry door and know if or when someone who did not belong to the house showed up. After an innocent visitor scared him by knocking on the door without warning, Luke retreated to the relative safety of my bedroom where he could hear the door open without seeing the visitors.
From there, Luke’s anxieties escalated to include family members surprising him by walking in unexpectedly. He quit venturing out of the bedroom at all without calling, “Mom to come!” or, “Dad to come!” to hold his hand as he went through the doorway to the bathroom. That fear of what might be on the other side of the door soon evolved into refusing to enter the main area of the house at all. When it was time to leave, he jumped out the window and ran to the car rather than venturing into the great unknown kitchen area.
Last month, we brought home a couple of twin beds from my in-laws, hoping to give T, Luke’s 12 year-old brother who has been sleeping on the couch, a real bed to sleep on. Luke, however, caught wind of these beds going into the basement. After hubby got one all set up in the basement living room, Luke immediately took it over and demanded, “Set it up there!” for the second bed. And thus, Luke has effectively moved out of my room and into his own space in the basement, even further away from any potential surprises. This move has been a mixed blessing. I certainly enjoy having more space in my bedroom, and not having all of his in-home therapists hanging out in my bedroom because Luke refused to leave it is also a huge bonus to my own privacy! We set up a table for Luke in the basement so he can color and play with his Legos in the relative safety and privacy of the basement.
Luke wouldn’t even leave the basement for his own birthday, so we brought a little party down to him.
This basement arrangement is probably the most convenient arrangement we have had in many years. Luke is quieter and seems most content if we just forget about him. He does not like to be interrupted, and we must announce ourselves before going downstairs into his space, even if it is to bring him his dinner. He absolutely refuses to come upstairs to the kitchen. However, he has figured out a new route to get to the places that have what he needs. If he needs a drink from the garage where we store the Propel and flavored water that he likes, he simply goes up the back stairs, through the back door, out the back gate, around the back of the house past the cars parked to the side of the house and into the garage. If he needs to get into the main area if the house, he takes a folding chair with him from the basement, up the back stairs, out the back door, around the other side of the house, through the gate, and plops that chair down under the bedroom window, pries open the window and jumps through it, thus evading all main paths family traffic, and of course, leaving every gate and door open along the way.
Luke needed into this room on Christmas day to find a specific stuffed animal to go with his new stuffed Mario and Luigi. This is how he comes into the house during the day.
The new exit strategy has led to several adventures in dog hunting too, as Gizmo frequently escapes along with Luke. It has become an inconvenient ritual of leaving the house every morning – making sure Luke has made it into a car in the garage, finding the dog, closing the gates and doors then leaving through the traditional garage doorway ourselves. This is all just a major inconvenience for us, but a sad symptom of the massive amount of anxiety that has taken hold of my sweet boy.
Luke adored the Grinch!
As that anxiety grips him, Luke is withdrawing more and more from new experiences. Before Christmas, we took him to ride a horse-drawn sleigh at a place he had been before with Champ’s Heart. He had a blast! It was familiar enough that he opened his eyes, interacted with both Santa Claus and the Grinch, who were both conveniently on hand. He was that same mischievous boy I have always known. This week, we took him on a sleigh ride to the elk refuge, thinking he would love it. To his credit, he went along with the idea and got himself out to the car independently. However, we quickly realized that the unknowns of the trip were too much. We had wanted to transfer to my Dad’s pick-up. No way. He would not leave the familiar car. The plan was to take a bus from Jackson to the refuge, but he again refused to leave the car. The operators of the refuge generously worked with us and allowed us to follow the bus in our car. As soon as we arrived, however, sweet Luke closed his eyes and buried his head under the hood of his coat. We guided him like that to the sleigh where he sat between hubby and I – head down, eyes tightly shut. We offered him a blanket to keep him warm. It went immediately over his head. I offered to take pictures of what we were looking at and show him so he would know what to expect if he opened his eyes. No! He sat hunched over, hiding his eyes the entire hour-long trip and refuses to open them even as he dismounted the sleigh and walked to the car.
I guess I should not have been surprised. Luke has been closing his eyes and ducking to hide more and more frequently this month. He did this at his sister’s baptism earlier in December and at church the next day even though his brother, D, was the speaker that day. Church has become unfamiliar to him since Covid canceled our ability to attend every Sunday. Now, he won’t even enter past the coat closet, so we sit in the closet and listen, eyes closed and head buried.
Christmas was no exception. He was scared that Santa might come. I assured him Santa wasn’t coming, but that he had left some presents for him outside and Mom brought them in the house. Santa won’t come in the house. But that did not appease him. Even the draw of Christmas presents was not enough to lure him from the basement. So, we took turns opening gifts, and running a gift or two down for Luke when it was his turn. He was a bit scared even of the presents as that also involves an element of surprise, but handled it so well. It became too much for him quickly, however, so we did not give him all of his gifts on Christmas. Rather, he opened one each day for several days afterward.
Lego Mario has been, by far, our most successful Christmas toy. The app shows him how to build it and then how to play with it too. He has spent hours interacting with Mario.
I really don’t know what to make of this new boy I have. Life at home has been significantly easier. Hubby and I even took a little 4-day vacation to Vegas between Christmas and New Year, leaving him with his adult siblings to care for him. I wish I knew if life was easier for Luke though. I am so sad that he no longer wants to participate in the few family activities we did have. Today, he would not even come upstairs for home church when we always sing songs he loves with him before preparing the sacrament. He utterly refused to leave the comfort of his basement hideaway and insisted we, “Bring bread. Order bread!” to him during the sacrament.
It is hard for me to think that he could really be happy as he harbors so much anxiety. I want so much to include him in family traditions and events, but pushing him too much inevitably ends in days of discontent and increased anxieties. More than anything, I want Luke to be happy. Right now, he seems content enough with his Lego Mario he scored for Christmas. In fact, he has interacted with that toy more than any toy except his Teddy bear that goes with him everywhere. Someday, I would like to see parts of the old, mischievous Luke back, but I am learning a new way to connect with the new Luke and have enjoyed several hours of just quiet Lego-building time. I miss the old, but love the new and hope we can strike a happy balance between the two someday!
This is my response to the third question asked in an online interview. The interviewer asked, “My next question is about how things have changed during lockdown? Have there been new challenges? And how have you managed to cope yourself?”
Summarized – The Covid lockdown has increased Luke’s anxiety, resulting in increases in the number and severity of meltdowns, increases in property destruction, increases in self-harm and violence toward caregiver, decreases in his ability to sleep, and the resurrection of past fears. Additionally, he lost access to his behavior interventionist at school, and academic progress completely stopped.
Luke has suffered tremendously from the lockdown. The biggest changes in his behaviors are all rooted in a huge increase in his anxiety. The easiest way to explain my perception of his state of mind is that he has lost his place in the space-time continuum.
As you know, most kids with autism are extremely routine bound. Luke relies on the predictable events that are unique to each day to anchor himself in time. He goes to church on Sunday, school on Monday, therapy then school on Tuesday, school on Wednesday & Thursday, therapy then school again on Friday, and he rides horses on Saturday. For Luke, it cannot be Monday if he didn’t go to church on Sunday. One Sunday he missed church during the day. In order to avoid the meltdown Monday morning, I got him dressed in his church clothes late at night and took him to the church. We sat in the chapel for a few minutes and walked into his church classrooms and just sat in each one until he indicated he was ready to go. This helped him move from Sunday into the routine of Monday. Now, covid hits and Luke suddenly has none of his anchors. He doesn’t know what is happening from hour to hour, day to day. He is just lost, and his anxiety is through the roof! For the first month, he woke up every morning and just sobbed – like sorrowful, helpless crying – not a kind of cry I had ever heard from him before.
As I mentioned earlier, Luke is scared of people coming to our home. That has exaggerated to people even turning around at the end of our driveway causing meltdowns. He now refuses to sleep in our bedroom. Instead, he piles his teddybears up by our front door and sleeps on the pile. I think he just has to watch the door because he is worried about people coming. Now, people he was ok with coming in the past are no longer allowed. One day, my daughter’s boyfriend was here. Luke knew in advance, watched him come, went through the routine of welcoming him in – all of what he usually needs to be ok. He and I were jumping on the trampoline outside, and he decided to go back inside. He walked through the door, saw the boyfriend, ran outside and threw a rock through the window. As I started cleaning up the glass, he ran around the corner and put his fist through two of glass panes of our triple-paned window.
Destruction of property has increased exponentially – here are some examples of property damage just since Covid lockdowns started: broken windows, chopped down landscaping tree, ripped up the interior lining of the door and the leather off the back seat of the minivan, broke my phone, broken mirror vanity; it never seems to end.
The number of severe meltdowns Luke experiences increased from one or two per week to two to four per day. The entire family is walking on eggshells all day trying not to mess with Luke’s rhythm. Getting him to transition from the couple of therapy appointments he does have is really tough. We try to communicate the schedule to him and review and review, but it still catches him unprepared sometimes. We never know what will trigger him either. The meltdowns Luke has also became more violent. He bites his hand during most meltdowns, but that has escalated to scraping his arms with whatever object he can find – Legos, broken plastic cups, sticks – until he draws blood. If the caregiver tries to intervene or remove the object from his grasp, he will attack the caregiver.
Sleep has become even more problematic than ever. He is very restless when he does finally sleep, and he wakes up so easily and cannot settle himself. We have resorted to giving him even more medications than usual to force him to rest – with his psychiatrist’s approval, of course.
Old fears have resurfaced with a vengeance. Last night, he was taking a bath and my daughter playfully through a balloon in the tub, thinking it would be fun for him to play with while he bathed. He completely freaked out and attacked it like a mamma bear fighting for her cubs. He was so scared, even after he had popped it and thrown in away, that he was just trembling then went through a full meltdown that lasted well over two hours. The thing is, he loved balloons before this. There was no way to have predicted the balloon would upset him. Then, he reacted the same way when he saw a little boy holding a balloon when I took him to a meeting at the DDA we are just starting to work with. He freaked out and absolutely refused to even go near the building. We had the meeting outside.
We worked so hard for so many years to overcome Luke’s fear of balloons. Now, that fear is back along with anything else filled with air – Beach balls, basket balls, etc. Even a ziplock bag blown up with air makes him tremble.
During what was left of the school year, we did try to maintain the therapies offered through the school (speech, occupational and physical therapy) through online meetings. These were ineffective at best and generally counterproductive as they often stimulated meltdowns. When you take a child who struggles with human interaction in the first place and ask him to now interact with a person on a computer screen, it just does not work. He doesn’t watch them, he gets distracted by seeing his own face, doesn’t even acknowledge that the other person exists let alone follows their direction. The therapist then relies on me to engage him, communicate what is wanted and demonstrate it for him, all the while holding my phone at an angle where they can watch how he responds. Picture my overweight body in downward dog holding the camera up with one hand and Luke rolling around me doing his own thing. It just didn’t work.
During the lockdown, we did a lot of Luke’s online therapies outside on the trampoline. His stuffed friends were frequent participants in his speech therapy sessions.
Perhaps the greatest negative impact was the loss of personal contact with his behavior interventionist who is always with Luke at school. Without someone to help me manage his behaviors, it was extremely difficult to achieve any educational goals with him on my own – especially considering I had three other children now doing school at home. Helping them with school and managing Luke’s new behaviors were an extreme test of my limits. Thank goodness, I did not have to work until the school year was almost complete. If the same model of education is used in the fall, I believe I will be forced to quit my job in order to focus on educating my children.
I will say that a lot of the behaviors we have been seeing have settled down this week. I don’t know if that is a lasting change or if he is just having a series of good days, but I will take them!
As far as the question about how I have managed, I have done pretty much the same things I described in my previous email. I did let Luke watch a lot of YouTube on my phone so I could help the other kids with school. Last week, I finally could not handle the violent meltdowns and called the crisis management number for help. I was SO SCARED to take that step because I am afraid that they will say he would be better living somewhere else. I want my boy with me forever, but I was desperate for help. Of course, as soon as I broke down and made the call, Luke started to improve, but since I made the call I decided to meet with them. Today, the agency sent out a worker to be with him. Luke would not let him in the house, but they played outside for six hours. I am hoping that the employee is a good fit for our family and that Luke will warm up to him and let him help the rest of our family function a little more normally. While he was here, we were able to make several home repairs that have needed to happen for so long.
Since writing this, life has become much easier. We are no longer trying to do online therapy and school. I am able to give Luke more attention since I am not trying to be a teacher for my Luke’s two younger siblings. He understands that it is summer now, so he is not as confused by all the schedule changes. We also have more help than we did. However, our crisis plan that provides that additional help will expire right before school starts. My fear is that the school’s plan to change the schedule as cases increase or decrease is going to trigger another significant regression for Luke again. These children with autism NEED stability in their schedules. I am really hoping that we will find a way to provide that for Luke this year.
Have you developed ways of coping with your own stress? (Thinking about pre-lockdown; my next question will be about how lockdown changed things).
Coping with my own stress as a caregiver –
I have been through a very ugly time about a year ago where I considered taking my life with Luke’s to ease the stress on the rest of the family. When I actually started making plans on how I would do it, I recognized my need to get help and reached out to my family support worker who helped me find a counselor for myself. I visited my doctor who did some tests and discovered I was extremely low on vitamin D and prescribed a very high dose vitamin D prescription to quickly get me back up to healthy levels. I am still seeing my counselor regularly and make sure to take OTC vitamin D – it makes a huge difference!
I also work two and a half days per week as a dental hygienist. I love the people I work with, and it is a good break for me to get away from the stress at home and have adult conversation – even if that conversation always comes back to flossing! My co-workers are super supportive and willing to listen to my crazy Luke stories without judgment. One huge concern I have if the Covid-19 situation does not resolve is that I will have to quit my job in order to support my kids in online learning.
I have a lot of family around me too, who are usually happy to help with what they can. My parents will often take Luke for drives to give us a little break. My sister and sister-in-law both let my other kids come play with their kids so that I can focus on just Luke when he is struggling.
Honestly, one of my greatest coping mechanisms is just asking for help. I believe that I have received support through prayer, and that my prayers are often answered through the hands of the people who surround me. I have a strong church and community family who share my beliefs and bolster my spirits through their prayers, acts of kindness, and words of support. Many times, I have sent out random requests on Facebook for help finding items to satisfy Luke’s latest interests. Honestly, I could never possibly remember all of them, but here are just a few I remember:
A random person I never met gave us a toy ammonia tank that came in a tractor set. Luke had broken his, and I could not find just the tank to buy.
Luke went through a phase of loving to look through a big coupon book that students in our area sold as a fundraiser. Ours was beaten and torn up during a meltdown, and he just cried and cried for it. I just asked on Facebook if anybody had an extra one, and within a week I had several backups for him. We still get one out to read once in a while.
My bishop and his wife brought Luke an electric train when I couldn’t find extra tracks for our train.
A friend brought a box of building blocks when I mentioned to her that Luke loved building things, but had just finished building the last Lego set he had. This happened in the early days of quarantine when we couldn’t shop. Luke was going stir-crazy and getting violent. He and Little A played with the blocks for hours.
A couple of boys in our community showed up at our door in a Ford Crown Victoria to give Luke a ride after he was upset because our neighbor sold hers and we couldn’t find another one for him to look at.
A sweet distant cousin brought us an HDMI cable when she read a comment I made on another post that we couldn’t watch TV during the lockdown because Luke had cut up our cable. So many times, I don’t even have to ask. Help just comes.
One coping mechanism that I feel a little guilty about is that I just tune him out when he is having long meltdowns where he is just not responding to any of the interventions I try. Sometimes, he just has to cycle through it, and it is very loud and annoying to listen to him scream and cry and repeat the same phrases over and over and over. When this happens, I just sit next to him and play some mind-numbing game on my phone as a distraction from the misery. I know, it sounds awfully disrespectful to him, but I honestly cannot make it better for him when he gets to a certain point. I think it is better to distract my brain than to allow myself to get more and more frustrated by engaging with him in the meltdown. I basically just disconnect from the situation emotionally. I always watch him closely and stay in the same room.
Finally, I write a blog about the challenges and joys that we experience raising Luke. I have found that, as I write, I am generally able to discover hidden blessings or hopeful thoughts for the future. I don’t have a huge following or anything like that. It certainly is not a popular blog, but that is not why I write. I write to help me process my situations and analyze the challenges. I really try hard to find the positive and laugh about the crazy antics we live. I believe you can either laugh about it or cry about it, and life is much more gentle on us when we choose to laugh and make the best of it.
I have struggled to know what to write about the past months we have spent in lockdown with Luke. They have been extremely difficult for the entire family, and yet we have had many moments of such joy and silliness that I am sitting here smiling as I write this. I was contacted by a researcher studying how caregivers and children with Autism Spectrum Disorder are coping during the COVID-19 lockdown. The interview is done via email, and he just sends me a new question after I submit a response. I thought I would share with you all my responses to his questions about our lockdown life. His first question was designed to get to know Luke and our situation, so if you have never read our family story, this is a good introduction. His question was:
“To begin with, can you tell me a bit about your child with ASD and how you normally go about parenting them? What kinds of challenges do you normally face?”
Maybe this is more than you want, but I started writing and this is what came out:
Our family about 18 months ago.
Luke is 13 – the 4th of 6 children. He communicates primarily using echolalia. He has limited ability to express ideas independently. We do a lot of fill in the blank where I start a sentence and he just has to come up with a single word response. Luke memorizes dialogue and lyrics quickly. He has a beautiful singing voice and and can sing almost anything he hears after listening only once or twice.
Luke us extremely impulse driven. He loves seeing how objects can change forms. For example, he likes to fill a plastic carton with water and put his toys in it, freeze the water, and examine how they look suspended in ice. He likes to place objects behind our car tires so that they get crushed. He puts household things in the microwave, toaster, or oven. This has resulted in small house fires twice. Obviously, close supervision is required 24/7.
Luke has a lot of anxiety about many things. He is scared of most inflatable objects, although he has overcome his fear of balloons that plagued him for his first 10 years of life. He is still petrified of air mattresses and bouncy houses, but he obsessed over them – watching and memorizing you tube videos and commercials for both of them. If he unexpectedly encounters an inflatable object, he will immediately recoil, tremble and refuse to walk past the object.
Luke is also very territorial of his home and space. Nobody can come in our home if he does not grant them entrance. When we return from work, we have to honk or call his caregiver (Usually a sibling or CSW worker) to let them know when to expect us so that he can see us pull in, greet us at the vehicle and walk with us through the door. If company comes unexpectedly, he hides in my bedroom and becomes very agitated and generally destroys stuff – kicks holes in the walls, flips over dressers, tears clothing, etc. We try hard to work around his anxiety as best we can. Asking people not to come to the house, meeting friends at my parents home or a store instead, distracting him in another area of the house or taking him for a drive away from home when we know people are coming are just a few of the accommodations we use to help avoid meltdowns.
Luke snuggled up with a teddy a dear friend brought for him. We are so blessed with great friends and family.
Luke does not sleep well despite doctor-prescribed medications. Four hours of uninterrupted sleep is a great night for him. We generally give him medications at 7 to get him to sleep, get him ready for bed, and he usually falls asleep between 9-9:30. Then, we try to have family time with the rest of the family until we go to bed around 11. He generally wakes up again sometime between 12-2am. We give him another dose of medications if it has been long enough to do so. I (Mom) stay with him all night. Sometimes, he goes back to sleep, but he is often just awake. I let him watch YouTube videos on my phone if it becomes evident that he won’t be going back to sleep. I doze within arms reach of wherever he is so that I can wake up if he gets up. Lately, he has become so paranoid that someone will come to the house that he is sleeping by the front door on a pile of teddy bears.
Luke becomes upset when things don’t go as planned in his mind. This leads to meltdowns. His meltdowns start with repeating phrases over and over then biting himself on the hand, recently escalated to scratching himself with whatever sharp object he can grab – sticks, ripped up plastic cups, etc. If we try to interfere he will go after us. He starts repeating seemingly random phrases that often don’t make much sense. Sometimes, however, he will start reciting a list of everything he can remember being disappointed by. For example, He might say something like, “Go for a ride in the Chevy venture, Grandpa will take you for a ride, ride the four-wheeler, ride a tractor, Cade will take you for a ride, ride in a Ford Crown Victoria!” Those are all things he has done in the past, but they are not readily available things that we can just do whenever he wants. He will scream phrases like this for hours sometimes – crying and wailing on the ground uncontrollably. He will usually break, bite or tear anything he can reach while in a meltdown. A lot of times, we can pull him out by asking him if we can write the desired item on a list so we don’t forget it. We keep an ongoing list for him on a big dry erase board in the kitchen. We very rarely get whatever is on his list, but the fact that it is written down often helps him move on to a new idea. If that doesn’t help, we might try to distract him. Food is the most predictably effective distraction. We might offer to take him for a ride if he is calm enough not to tear apart the car. Sometimes we can look up the item he is obsessing about on google and show him a picture of it. Sometimes, nothing works and he has to just go through the meltdown. We step away and clear the area of object he could use as projectiles or to hurt himself.
Amid the chaos, we have many moments of pure joy!
Those are a few of the major challenges we have. We struggle with many, many smaller issues. However, it is not all a struggle. Luke brings a lot of joy to our home too. He loves his teddy bears and we practice talking back and forth using bear voices. He loves having siblings or me read stories to him and will seek us out, take our hand and sit us down with the book he has picked. He frequently sings under his breath while coloring or drawing pictures of tractors or bouncy houses, which he then tapes to the wall. We probably have 150-200 Luke pictures that line the walls of almost every room of the house. He is very smart and creative. He builds amazingly detailed tractors with Legos out of his own imagination.
Luke has taught me a lot of tolerance. I have definitely had to learn to pick my battles with him and lower my standard of perfection. I often joke that, “Happiness is best achieved through lowered expectations!”
Luke cried today. It is the first time I have ever heard him cry. He woke up and a few minutes later just started sobbing – sobbing that sad, heartfelt cry that escapes when you feel trapped with no end to the trial in sight. When upset, Luke generally cries for a few seconds then interrupts with his stim words like, “Do you want a yellow bounce house, yellow bounce house, yellow bounce house?!! I know perfectly well that it is not a yellow bounce house that he actually wants (as he is, in actuality, both fascinated and terrified of bounce houses). No, this was not that interrupted, stimming frustrated or angry cry, it was a genuine, heartfelt expression of sorrow and confusion. It broke my heart!
The struggle we have is that he genuinely cannot tell me what he is upset about, so I play the guessing game. Of course, I assume that all of the changes in his schedule and routine are the core issue, so I suggested, “Are you upset that you don’t get to go to school?”
“No School! No School!” was his eventual response. His sad, mourning cry slowly evolved to his more typical crying pattern as he interjected, “No school! No church! No school! No church!” into the bouts of screaming and biting himself. We used his favorite teddy bear, “Bahr,” and talked about it. Bahr tried to explain to him why we have, “No school! No church!” He understands much more than I realize, but he really was not demonstrating to me that it was helping. I tried to find a children’s video on YouTube that could help. The one I found pictured the Corona Virus as small red dots outside and explained that we need to stay inside. He immediately ran to the window and said, “It’s white outside! It’s white outside!” (Excellent communication as it had snowed!)
Clearly, the video did not help, so I tapped the vast knowledge of a group of special needs
parents on Facebook, and quickly found a social story that I could print out and read to him that specifically addressed why we cannot go to school right now. This helped tremendously and he was able to move on with his day in a relatively normal rhythm. Relatively normal until my husband came home from work, that is.
Luke REALLY struggles when people come into the house – ALL PEOPLE – even his parents. For the past couple of years, we have needed to call ahead to let whoever is with Luke know to tell him we are almost home; then, once we are in the driveway we honk so that he can come out and meet us at the car and then enter his space in the house. Lately, however, Luke has been taking baths frequently when John comes home. He has been ok with us just asking if Dad can come in. That was the exact scene today. Luke had been in the tub, given permission to enter, and I was trying to dress him. But something went terribly wrong for him.
The moment Luke heard my husband’s voice, he just started screaming, “Dad to go back; Dad to go back! Dad goes to work; Dad goes to work!” We tried having John leave so Luke could run out and greet him, but it was too late. He spiraled into a full meltdown of word repetition and crying and biting himself again. “Ride in a green Malibu! Red four-wheeler; red four-wheeler! Dad to go; dad to go! No school! Yellow bounce house; red four-wheeler! Dad to go! No chuch; no church!” It is so hard to watch. He is trying so hard to make sense of what is going on, but now he has no anchors to his day. Every day is the same, but enough different that he cannot ground himself to any kind of routine.
I suggested that we make a schedule so that he can see what to expect. He continued the
verbal stims, but clearly wanted to see a schedule, so we wrote down what needed to happen tonight and a couple things we know will happen tomorrow. Today, he only needed to put his pants on, eat the hamburger he requested, take his medicine and go to bed. He kind of calmed down, but still refused to put his pants on and come out of the bathroom. He started asking for rides. We had just been out driving for over an hour, so I was not keen on going for another ride at the moment. He asked, “Go for a ride in the Ford Taurus?” That is at least a vehicle we own, so I was like, “How about if we find a picture of a Ford Taurus?” I googled 1998 White Ford Taurus and showed him the
pictures of “our car.” He thought that was hilarious! He started giggling and popped right up and put his pants on then greeted Dad as if nothing had ever been a problem. He even sat at the table to eat dinner with Bahr. The rough evening quickly turned sweet and he went to bed more peacefully than he has in a long time.
I hope he rests well because tomorrow is our first day of online school, and I am dubiously hopeful that Luke will participate. We are expecting a video call from his Behavior Interventionist at 9:30, and I hope that man can work some sort of magic to help Luke understand all of this. The days forward are uncharted for all of us. I am sure that we will have our share of meltdowns, even though I have no intention of pushing Luke too hard on the academic pages. If we can get through all of the online therapies – speech, occupational, and physcial therapy -anything above that will just be icing on the cake! Meltdowns happen, but maybe that picture of the 1998 Ford Taurus will continue to save us. Here’s to hoping!
Last summer, I had what I would think is the closest thing to a midlife crisis that I have experienced in my lifetime. I was listening to an inspirational audio book that had rave reviews. Several of my friends had read it and shared how motivated they were by the ideas the author shared. Well, I certainly needed some motivation, so I decided to give it a try. At one point the author instructs the reader/listener to pause the book and write down an idea or ultimate goal – something that really sparks joy – the instruction was to take as much time as needed and not to return to the book until you had identified and written that goal down.
I never returned to the book.
I was empty. Empty of ideas, goals, or dreams. I was not particularly unhappy, but I was certainly not sparking joy anywhere. I was in survival mode. You know that place, right? The place where you are just moving through the day, making sure the children have been adequately fed, appropriately loved, and reasonably clothed, and the house hasn’t burned down. That is where I was. I quickly gave up on this ethereal, “Ultimate Goal,” idea and focused on something more attainable – what even brings me joy any more?
It was a real quandary that I honestly stewed on for a solid week. It bothered me and kept me up at night. Of course, I had all of the standard answers of things that I love and hold dear – my faith, my family, my health – but that was not the kind of answer I was looking for. I was searching for a spark of joy – something beyond the typical answers (which sounds selfish as I write it, but just go with me on this one). At the time, I felt lifeless even though I was living a very full life.
And then it hit me. I LOVE the sweet little pictures and notes that the kids draw and write. I treasure them. They are all sweet reminders of the joyful little spirits that I created. I don’t even mind the pictures that are drawn on the walls. They are evidence of happy children and joyful creation. I thought of all of the little cards and pictures the kids had colored for me over the years, and I truly felt that spark of joy my soul needed. With that crisis resolved, I went about my life.
Not a week later, Luke developed a new hobby – a new hobby of coloring pictures and
displaying them – displaying them ALL – every. single. one. – on the wall. When he ran out of space on one wall he just moved to another, then another, and another. So now, every wall, window, cupboard door, and appliance in my home is covered in JOY.
He has spent hours and hours and hours coloring and then carefully taping up his work to every empty space he can find. He is very generous with the tape too. None of this careful folding of little pieces of tape and only taping the four corners. No sir, baby; those picture are strapped up for life!! Every once in a while, Luke will get in a foul mood and rip up his artwork from one area, but we have never dared move or remove his artwork unannounced.
Until today.
An unexpected day off of work today led me to take a risk and remove all of Luke’s artwork from one window – the one by my kitchen sink. You see, even though I really appreciate all of that joy, it blocks the view outside my window and prevents light from entering, and now my soul needs both joy AND light! So, since I had already made arrangements for Luke, I decided today was my day to find the light.
Top- I didn’t think to take a “before” pic until I had already taken off the pictures from the bottom of the window, but this give you an idea. Bottom left – Trying to show you just how much adhesive was smeared all over the window. Middle after soaking it for a while, this is what was left. Right – Using the steamer to remove it almost worked like a charm.
That light was not coming cheap today though. There was just. so. much. ADHESIVE! After soaking it, spraying it, and scraping at it for a while, I had a brilliant idea – steam it! This was a great idea, and it actually worked beautifully. . . . Until it didn’t. Just as I was finishing up the first window and congratulating myself on my clever thinking, I left the steamer in one spot on the window for too long, and it suddenly cracked. Dang it!! Ironically, I taped that broken glass window back together with the same stinking packing tape I had just spent hours scrubbing off!
Not to be discouraged, I put the window back together and continued cleaning up the kitchen. As a sidenote, Little A had the flu earlier this week, and has a killer cough to remind her that she had the flu. It seems to come and go, but today it was definitely coming. Poor kid just hacked all day long. At the end of the day, I was feeling pretty proud of everything I had accomplished despite having a sick little girl and Luke home for the afternoon. That was my first mistake. As I was taking care of Little A, I had T go check on Luke in the bathtub.
“MOM, YOU’RE GONNA WANT TO SEE THIS!!” Those words 100% of the time mean I definitely do not want to see this. Sure enough, Luke has dumped a bottle of shampoo into the jetted bathtub. With the jets on high, the bubbly water overflowed into the living room. It was kind of a sick and twisted blessing in disguise because I had never cleaned up all of the toilet paper that was caked around the tub surround from last week’s experiment with two full rolls of toilet paper and a jar of Vaseline in the bathtub with the jets on. The entire bath area looked like a paper mache project gone horribly wrong. This bubbly mess loosened the pasty paper from everything, so we cleaned two messes with one stone. While cleaning that up, I paused to check on Luke and found him plunging the toilet in the other bathroom. I saw no evidence of objects remaining in the toilet, but who knows what surprises will find us later. Last week, it was a hairbrush. The week before, it was a knife.
It is on days like today that I really appreciate those things that bring lasting joy – the things that I was looking past during my little summer crisis – my faith, my family, and my health. My mom came and picked up my broken window to see if the glass could be replaced. My husband came home amid the scramble to keep Luke out of the toilet while cleaning up the bathroom. He stepped up and made dinner and fed the kids while I had a little mini meltdown in my newly-clean bathroom. He also found a long-lost humidifier and got sweet, Little A all hooked up with that in her room so hopefully she can rest.
For a moment, all is right in my world. The house is quiet as I wait for Big A to get home from work. Luke is still awake and giggling sporadically as he tries to fight off the sleeping meds he took an hour ago. Little A is only coughing occasionally, and T is happily tucked away watching basketball videos. Hubby is off to bed, and I am just sitting here, staring blankly into space and feeling the joy!
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bright orange balloons 