We Don’t Gas in Sunday School

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 Whole New Luke

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!

How Things Changed During Lockdown – Interview Question #3

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. 

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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.

Coping as a Caregiver – Question 2

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.  

Lockdown with ASD -Interview Question 1

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!”  

Sheltering with Luke’s Autism

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!

Feeling the Joy

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!

Minor Miracles

I believe we see little miracles every day, all around us. I want to share this little one. We rarely take Luke out to community events because his behaviors are so very unpredictable. We never know whether he will tolerate the crowd or take out his extreme anxiety on an unsuspecting member of the crowd or just meltdown in the middle of the floor where we cannot easily remove him.

Because of this, we miss a LOT of our other children’s events. If we really want to see something, usually one parent will go and record it for the other, which is what we had planned for Little A’s halftime mini cheerleader performance last night. I was the designated attendee, but my phone battery was low, and I worried that I would not have enough juice to record her performance. On a whim, I asked Luke, “Do you want to go to the game or stay home with Daddy?” I fully expected his typical response, “Stay home with Daddy.” However, he surprised us this time and chose, “Go to the game!” He even willingly put on shoes and socks (another SIGNIFICANT daily battle).

However, once we arrived, seating was extremely limited. After surveying our options, we plunked ourselves down behind the opposing Cougar bench. It wasn’t ideal sitting in enemy territory, but it was closer to the front and made access to exits much easier.

It was here in Firth territory that we got to know a teenage boy named Seth.  Seth had the fortune of sitting in front of Luke. The moment the poor kid settled into his seat, Luke lunged at him from behind. He grabbed the unsuspecting stranger by the chin, jerking his head to the side so he could get a clear look into the young man’s face while yelling, “My name is . . . ? My name is . . .?!” about an inch away from his eye sockets. 

The poor, bewildered kid looked at me for direction, and I just said, “He wants to know your name.” As soon as he responded,  “My name is Seth,” Luke released him from the headlock, and I thought that would be the end of it. Actually, I prayed that would be the end of it because this kid had really nice hair, and I had visions of Luke wrapping his hands in those flowy blonde locks and never letting go (Yes, we have a history with this maneuver, and it is quite a difficult situation to unmaneuver.) However, rather than being annoyed with Luke’s brash introduction, quite the opposite situation unfolded. This sweet kid with longish, flowy hair quickly asked Luke what his name is and then turned around several times throughout the game to try to engage Luke in conversation.   He asked Luke how old he is, and Luke answered, “Good!” repeatedly.  When Luke bumped into him,  he would happily pass it off and joke a bit with him. It really was a pretty sweet interaction that lasted off and on through the entire first half of the game. It was one of those small tender mercies in life that could be passed off as coincindental, but I truly believe are little miracles that show God is aware of us in our struggles.

Both of us parents got to watch the entire performance in person, and then John took Luke to get a treat at the concession stand before taking him home. It was a beautifully simple experience that one simply cannot appreciate without understanding how truly complicated it normally is.

I wish I had thought to take an actual picture of the teenage boy who treated Luke with such kindness!

I’m So HAPPY!

“I’m so Happy!”

It is a joyful phrase for any momma to hear her child utter, and it is one I heard from Luke in October. One of my friends tagged me in a post that Champ’s Heart, a local charity, had a single opening on a Thursday night for a child with special needs to come for a horse ride.

So let me preface this by sharing with you my previous experience with horses and my general level of interest in horses . . . . . . . . I rode a horse a couple of times as a preteen, and my grandpa was in a bad accident while riding at a reunion when I was about twelve. . . . . . . end of my personal experience and interest in horses.

However, our neighbors have horses, and Luke has never had any hesitation about hanging with them. In fact, when he was four or five year-old, our neighbors had a large, white horse named Twister. As I remember it, Twister was not fully trained, and we sometimes watched our neighbor work with him on a lead rope in a circular pen put up in the coralled area next to our house.

Well, one day, Luke came up missing. This was not unusual, but we had looked and looked for him, and panic had set in after we couldn’t find him in any of his usual hideouts. I had started searching and calling his name wildly throughout the neighborhood. I stopped my racket abruptly, however, when I caught sight of my little man in the coral with Twister. I stopped and gasped at the sight. There was my boy, poised for business directly behind Twister’s haunches. His pants hung nonchalantly around his knees, and he held one arm up above his head, clasping Twister’s long tail between his little fingers. He held this position stoicly and watched his urine stream pour between the horse’s legs – much like he had likely seen the horse do for itself. Not daring to spook either creature, I watched the scene unfold quietly from a distance. Once he had done his business, Luke dropped the tail, hiked up his britches, and mosied along like it was nothing out of the ordinary.

My second suspicion that Luke might enjoy horses came when I took Luke to Scotty’s Restaurant for an event to show appreciation for the owner’s involvement in our special needs community. One friend had brought a donkey and a camel to the event and offered free rides on the donkey. Luke absolutely loved it! He rode and rode that little donkey, and we had to pry him off everytime another child wanted a turn. During one of these frustrating waits, Luke decided to take matters into his own hands. After all, the owner had brought two magnificent animals; why were we only riding one? He hauled himself over to the camel and jumped up a rear leg trying to claw himseld up to the camels back. Of course, this caught the poor camel off guard and he kicked a the sudden attack, narrowly missing a young girl who was innocently petting the giant beast. Thankfully, no one was hurt, but Luke repeated, “Ride a camel, ride a camel!” over and over for the next three days.

And so it was with these two memories that I decided to see how Luke would react to this generous offer to ride a horse at Champ’s Heart. I wish I could say that the first visit was perfect. It wasn’t. Luke saw one of those horses go to the bathroom, and thought that was just about the most glorious entertainment he had ever beheld! He marvelled at the mud puddle created by what used to be a boring dirt floor and giggled uncontrollably every time we passed it. He balked at a bit at the helmet he had to wear before riding too, and I really wondered if this was a big mistake. However, when he finally got on a horse, he seemed to relax a bit. He tried being silly and throwing the colored balls we used for an activity in front of the horse’s feet a few times, which startled both the horse and the volunteer leading the horse. But after a bit he calmed down and just seemed to enjoy the rhythm of the horses movement. As we walked, the volunteer at front and me on the side, I heard the most beautiful words ever escape my sweet boys lips – “I’m so happpppeeeyy!”

He said it in his silly bear voice that he uses when practicing conversations with his big teddy bear named Bear (but pronounced, “Bahr.”) But he said it! This is the first time I have ever heard him refer to himself in the first person. It was the first time he ever identified his own emotion independently. It was a perfect, beautiful sentence that told me how he felt about riding horses.

Since that day, we go ride at the arena run by Champ’s Heart owner, Larry Cudmore, every Saturday at noon. I always ask Luke if he still wants to go, and he excitedly drops everything and runs to the door as soon as hears the question (so I better be ready to walk out the door before I say anything because that has triggered more than a few meltdowns).

Since that day, I have only heard, “I’m so happy,” one other time – while we were riding the train at Bear World with his Grandma for his little sister’s birthday. He doesn’t communicate emotion with his words much, but I am always listening and watching, and even if his words don’t say it his expressions do.

I’m so happy!

Growing Pains

Growing Up

Today is Luke’s birthday! He is officially a teenager now. He is growing and changing and that is triggering some anxiety about the future for me. Yesterday, my hubby pointed out his first zit! Eek; such milestones! What if he inherits my acne-prone complexion? With his compulsion to pick at any little anomaly, he will surely skar his face badly before he emerges from adolescence. And that is only a minor worry…..

Hanging Out in the Waiting Room

I had the most encouraging/discouraging visit of my life while waiting for a recent appointment with Luke’s psychiatrist. The thing about spending 3 hours in the waiting room of a psychiatrist’s office is that you get the opportunity to meet some really interesting people – often people who understand your world on a deeper level than you ever thought possible. This was the case at our last appointment.

About 2 hours into our wait, a middle-aged man and his mother entered the full waiting room. The man quickly seated himself at the far end of the room in the only single chair still open. He pulled out his headphones and situated himself with his elecronic devise of choice. At this point in our wait, Luke was just done, my cell phone battery was almost dead, and he had resorted entertaining himself by ripping off chunks of leaves from the large, decorative plant in front of the window and stuffing them in his mouth.

I was taking this picture because he had been sitting nicely, next to the plant for about 15 minutes.  The intent was to use the picture to show him a picture of his good behavior and use it as reinforcement.  Of course, as soon as I snapped the photo, he chose to demonstrate the futility of that strategy!

Now, just so we are clear here, the entertainment for him is not in the ripping of the plant nor is it in the joy of chewing on nasty houseplants, the joy in this boredom buster activity is observing Mom’s reactions to this utter nonsense. My strategic response was a three part maneuver:

1. Move Luke’s chair to the corner.
2. Position myself between him and the horribly tempting plant.
3. Engage in a sensory distraction technique to override the impulse to attack and destroy the plant. The technique of this moment was running my fingers up and down Luke’s legs. It is also importsnt to note that, on this particular day, Luke was wearing his favorite Pooh Bear costume.

Voice of Experience

And so it was in this very awkward state on the floor, rubbing my giant Pooh Bear of a boy, that I met this beautiful woman who sat on a couch near my defensive position in the corner. She smiled warmly and asked how deep into the wait we were. I pointed out the two families who were still ahead of me waiting. She smiled again and said something to the effect of, “I’ve been where you are.”

“I’ve been where you are” – these are powerful words for a girl sitting on the floor, rubbing the legs of her 150-lb son dressed up as Winnie the Pooh. I mean, I think relatively few people in this world could make this statement with any degree of sincerity.

But this woman could.

She shared stories of the struggles she had survived with her now 57 year-old son – how he had also engaged in property destruction as a hobby; how he ate nonfood items; how he laughed when she got upset. She shared the sorrow of placing him in two different care facilities in his late teen years when she and her husband could no longer safely manage their boy at home. And she shared the greater sorrow of bringing him back home, traumatized from the experience. They realized that their imperfect care was still better than what either facility was offering him.

Of course, these stories speak deeply to my greatest fears for Luke as we enter his teenage years, and I intently asked how she was able to care for him still at her age of 75. She quickly explained that he has made great improvements and is now a great joy to her. This sparked hope in my soul. After all, if her son, with so many similarities to Luke, had grown into such a self-controlled adult, surely my boy would too.

“When did you start noticing improvements in his destructive behaviors?” I probed. I will admit, my question was a selfish attempt to get a sense of how much time I might expect to pass before Luke started to mature beyond his own behavioral challenges.

She responded, “Oh, it was the craziest thing! When he turned 44, it was like he just became a whole new boy!”

She went on talking about how much his behaviors had changed, but I was high centered in the conversation – not able to move beyond that age she had so nonchalantly thrown out – 44!

FORTY-FOUR!! Are you kidding me??

Once I choked down that goodie and had the where withall to continue the conversation, I asked her what her plan for him was once she was gone. Her response to this question likewise left me reeling:

“I will outlive him,” she said. “I’m sure of it.” Old age runs in my family. My grandpa lived to be 105, and my mom is 96 now. I plan to care for him until he dies, and then I can go too.”

At this point she smiled at me and patted me knowingly on the knee, “And you will too! We do what we have to do to take care of our boys.”

Celebrate the Moment

Yes, we do what we need to do to take care of our boys. Even though his real birthday is today, we celebrated Luke’s birthday last week when he was having a particularly good day. After a beautiful morning spent riding a horse-drawn sleigh (More on that story in a future post), Luke and I went to Home Depot and bought him another train. I took him to the grocery store to pick out his cake mix – chocolate – and decorations – sprinkles and 3 different kinds of candles. He also wanted fried chicken from the deli and a pack of Hubba Bubba gum and a pack of gummies. He was so excited!

The one-horse open sleigh ride that put Luke in such a great mood that I decided it should be his birthday.  I love picking beautiful days to celebrate Luke.  It was certainly not a convenient day to work in a party, but it ended up being the perfect day for him!

Like last year, he went home and helped me mix up his cake. I wrapped his train while he wrapped everything else he could possibly cover with paper. I was in and out with church meetings, so it took most of the day to get everything ready then we had a very small party with just John and I and the two younger kiddos there. That is the way Luke likes it – small and simple with lots of presents to unwrap, but no surprises. He has to know what is in them already, or the anxiety ruins the fun. We are learning right along with him how to adapt our lives and celebrations to support him and still maintain old traditions for everyone.

The only guests at our little party with the cake Luke joyfully decorated himself!

And so, my sweet boy, I wish you a very happy 13th birthday! Only 31 more before the peaceful years roll in!