Gems in the Desert

Recently, I spent the day with my darling Caleb and after I returned him to his group home, I realized how exceedingly long it has been since I’ve posted. Please forgive me, dear reader, and let me catch you up.

For anyone debating group home placement, allow me to share the wonderful aspect of such a move. Not all placements are good, just as all relationships or jobs or other situations are not good. There is still much effort and constant attention and communication. Oh, but it’s so worth it, mostly for the special needs adult.

In two and a half years, Caleb has gained independence, as any 25-year-old should. He can advocate for himself, communicating his needs and wants. Without me to type words into his tablet, he has learned to read so he can go to YouTube and play his favorite music, movies and TV shows.

Along with necessary structure, Caleb has three roommates with whom he eats meals, goes on outings, watches movies and sports. The staff are particularly kind and involved and he knows their schedules. He attends a day program and has developed close relationships with several other attendees. It’s a marvel to me, as I always dreaded, in the dark, hidden corner of my mind that he would live his life deprived of such wonders.

A few weeks ago, someone suggested that Caleb be evaluated at a tutoring center. One of their treatments involves playing classical music to help align his brain, citing a recent student who went on to thrive in math and was promoted to goalie on his soccer team. Despite not knowing Caleb, they were urging me to pursue this evaluation.

I took a breath, learning as I have over two decades, to remember that this suggestion was likely coming from a place of concern and hope. I told them that Caleb and I have put in thousands of hours of speech, occupational, physical, and equine therapies. In concert with the world’s best teachers and tweaked programs, Caleb has ascended to his highest functional level, and he continues to learn.

While informing this individual that this soccer goalie and my Caleb didn’t exist in the same realm, I allowed myself to reflect on how delightfully the world has evolved since Caleb’s birth.

Twenty-five years ago, autism was a scary, whispered word. It’s still not likely a diagnosis that anyone would dream about for their child, but the diagnosis is burgeoning into something more recognized and accepted.

At breakfast that day, without any prompting, the lovely server asked me if the plastic glass was okay for him, or if he would prefer a to-go cup. Her warm smile and kind glance was and would have been precious water to me in the very scary desert of Caleb’s diagnosis when he was two years old.

We all know this acceptance is not global. Caleb, my daughter and son-in-law, my husband and I have endured too many instances of ignorance, cruelty, and debased rudeness. Those instances don’t deserve any mention here. They haven’t earned a place in any of our memories so I’m leaving them in the trash bin in my mind, rather than bringing them out for recycling now. There is nothing redeeming in reliving such pain.

Back to the sparkling bubbles of acceptance, our day involved a routine doctor visit. We have had wonderful doctors, but now there is an inherent, complete recognition of Caleb and his personality. Isn’t that what all of us Neverland parents crave? Don’t we want the world to see our marvelous children for who they are?

Even if you are not here yet, or you are weary from assaults from the unkind, know that there is the possibility of finding this gem glittering in what can feel like a barren desert.

Afterwards, in the car, Caleb picked up my phone as always, because he chooses all the music. He immediately began playing The Moldau written by Czech composer Smetana in 1874. This song tells instrumentally of the Moldau River as it journeys from inception in Bohemia, as two streams powerfully connect, merging with other bodies of water until it lands in Prague.

The Moldeau has played in our home for decades. Caleb is also partial to Vivaldi and the various works of Yo-Yo Ma. Sophie has deciphered that he particularly enjoys music in the key of G.

So, when this well-meaning person posited that Caleb should attend a center to listen to classical music, I smiled and thanked them for the suggestion.

But here is the tiny nugget that would have been missed if I were not sitting next to Caleb. As the car filled with music, he pinched the bridge of his nose, his effort to hold back tears, and whispered my dear father’s name. We lost this inimitable man two years ago and are still in the throes of grief. This great, good man is the reason we know this particular song. He played this and many other classical collections as I grew up and then he and I did the same for both Caleb and Sophie.

As always with Caleb, it was a quiet moment. He communicated all he needed to with one word and one gesture. I looked at him and said, “Honey, I miss him too.” He nodded, looked out the window and relaxed into the song. We both smiled, remembering my father as he mock-conducted the stereo in the family room, calling attention to each note, telling us where the stream picked up other waters, wearing a beatific smile of prodigious content. What joy to remember such a happy time instead of only mourning his loss.

You don’t need to force classical music or any other trope on any child. Just like with the soccer goalie, this worked for us but may not be for everyone. Look for the connections. Look for children who associate colors with emotions, or whom you find stimming in certain situations and try to see the cause. You may need to part the forest a bit to find your particular tree, but it’s there.

Your tiny stream will find its own path and journey to its own place in this very large world.

Our kids have extraordinary intelligence that presents in its own way, but I promise you it is there and you will find it.

Be well, dear reader, until next time.


The Bane and the Beauty of Social Media When Your Child Has Special Needs

We’ve all been there. You’re having a really difficult day so you go to Facebook or Instagram for a quick mental escape. At first it’s fun to scroll through and see what everyone is up to, but then it hits you.

Everyone looks so happy. Everyone is doing something you aren’t able to. Everyone looks carefree while you are trying to figure out how to get poop handprints off a wall. You’re trying to figure out how to make a nutritious meal out of Kraft Macaroni and Cheese and ramen. You look to the pile of laundry that is so old you need to add more laundry before you can even begin.

Here’s the thing: the pictures of the happy people are often illusions. They are often the one spot in a difficult day. The poster, special needs parent or not,  may be having just as challenging of a day as you but that one picture gives them hope to get through the rest of the day, so they post it.

When your child has special needs, Facebook envy is even more compelling. As I write this, there are gardeners loudly spreading mulch with various machines throughout the community in which we live. About every 180 seconds Caleb comes to me and says, “Man go home. I don’t like man.”

We have worked with his developmental pediatrician and his therapist to figure out why this bothers Caleb so. I think it’s a combination of fear (because the men wear masks), sound which hurts Caleb due to Hyperacusis, and disruption of his routine. Nothing helps and today will be a very long, very difficult day.

A few moments ago, Caleb left his room to come and tell me again how much he doesn’t like the man. I stopped typing, went to hug him and he pushed me away and began hitting himself in the forehead with both hands. Trained for years on how to handle this, I kept my face neutral and asked if I could do joint compressions on him, which he allowed. They calmed him for a moment but then he screamed, “Man go home!” and hit himself again before returning to his room.

This week a dear friend’s son, who is exactly my Caleb’s age, graduated from boot camp with the Marine Corps. My heart swells with pride for him and his family, remembering the little boy with chubby hands who ran through my house giggling in glee. I study this young man’s official Marine photo and marvel at all he has gone through in three months to earn this incredible honor. When my mind pipes up with “Caleb is still completely floored when he hears a lawnmower” I shush it and focus instead on the glowing family surrounding their amazing son.

I’ve written before how Caleb should be a sophomore in college now. It’s easy to forget this until I see pictures of his peers and all they are doing. I know I would have different worries if he was away and I remind myself of that often.

On one of the many special needs support groups I follow on Facebook, a mom wrote of going to a carnival with her family. Her four year-old daughter is on the autism spectrum and it was nothing short of a miracle that the family made it through the day without tantrums or meltdowns. The mom wrote of the victory of this moment. My immediate thought was that they probably passed families who looked at them with envy, wondering how they were able to have such well-behaved children.

We can’t know everything from looking at a picture. We can’t really know anything. We can’t know that perhaps the couple having the expensive meal is drowning in debt. We can’t know that the happy-looking family on vacation is dealing with untold stress that they keep to themselves. We can’t know, so what good does it do to think beyond the picture?

Moses, Caleb’s favorite Bible dude, had it right when he brought God’s Commandments down from Mount Sinai. All of the Commandments are sound, but “You shall not covet anything of your neighbors” is particularly applicable today.

Parents of children with special needs are often so broken from years of diagnoses, doctor visits, sad school reports, exclusion from social events and even more dire diagnoses that we are living below the surface. I had a physical therapist tell me that even my breathing is affected—it’s shallow because I am in a constant state of fight or flight. Like today, do I fight Caleb’s intense fear of the noises outside and try to help him through it, or do we take flight and escape the sounds, only to be 100% committed to do that every time there is work in our neighborhood?

It is so, so hard, believe me, I know, to stand our ground and try to work through difficulties. It’s exhausting and it draws upon resources that are already depleted. If looking at photos on Facebook or any other site pulls you down, maybe a sabbatical is needed. I have several friends who have tried this and felt great relief. We didn’t used to know so much about our friends. Perhaps when we are already feeling excluded and challenged by our lives, it’s best not to see what everyone else is presenting as their life.

On the other hand, I find great comfort in the support groups on Facebook. We share stories, offer comfort or solutions and just commiserate. Like I hope this blog does for anyone reading it, these groups remind us that even though we face inordinate challenges on a daily basis, we are not alone. We are never alone.

When your child has special needs, at whatever level along the endless spectrum of abilities, it’s natural to compare your life to others. My incredibly wise grandmother used to say: “If you’re going to be jealous of anything in anyone’s life, you have to be jealous of everything in their life.”

Her words echo in my head constantly and leave me able to say, with full sincerity: “If Caleb had to be born with all of these challenges, I am so grateful and privileged to be his mom.”

It is my hope that in peeking behind everything you may see on social media, you are able to say that too.

10 Tips For a More Peaceful Christmas With a Special Needs Child (or any child, really)

I remember when my now 19 year-old Caleb was a young boy and how difficult Christmas was for him. Everything changes on such a big holiday. There are different foods, sleep schedules are off, people are in and out of the house, you are in and out of different houses. It can be a very loud and confusing time for a child with sensory difficulties.

For a while I tried to do everything like a neurotypical family. I failed. This made me stressed out and both Caleb and his sister Sophie felt my stress, which made them stressed out. It was a cycle that left us all exhausted and ready for a wonderful day to be over.

Since that time, I have made some small changes that may help some of you in your own families, with someone with special needs or not.

  1. I know you hear this all the time, but try to keep things simple. Maybe this year you don’t need to wrap every outside surface with lights. When I can, I do, but I have let this go when things are challenging.
  2. Caleb was often confused by the conflicting images of Santa and Jesus at Christmas. We chose to focus on Jesus and have birthday cake complete with a candle for breakfast. This year I’m not able to make a cake so it will be a really fun Krispy Kreme donut. Will anyone even notice I didn’t spend an hour making the cake? I love family traditions so much, but sometimes they can be work that saps energy you need to lavish on your family. Caleb was just able to verbalize this year that Santa frightens him—he must have felt this way for a long time and just now gained the words to tell me. Trust your intuition with your child.
  3. In keeping with celebrating Jesus’ birthday, I borrowed something that Kathie Lee Gifford said in the 1990s. She said her kids got three gifts for Christmas because that’s all Jesus got and it’s his birthday. Bam. This not only keeps a budget in check, I have found that too many gifts overwhelm and exhaust Caleb. When gifts come in from sweet family members, I let him open them a few days before Christmas, one per day. Where a neurotypical kid loves the pile of wrappings and new toys around them, Caleb becomes so anxious. Spacing the toys out up helps him to appreciate them and maintain the sense of order so essential to his sense of calm.
  4. It took me years to learn this one: For young kids, assemble anything that needs assembling ahead of time and if it doesn’t need to be wrapped, stick a bow on it. I used to wait until Christmas Eve to get everything assembled because I didn’t want any surprises ruined. I remember one year when the kids were really little, I was up until 3:00 AM assembling Barbie’s Dream House. When the kids woke up a few hours later, I was so tired that I didn’t fully enjoy all of the excitement. If big items can’t be hidden, ask to store them at a friend’s house.
  5. When you can, wrap things in batches, so it’s not a marathon wrapping session the night before Christmas. A very good friend of mine who is the mom to five kids under age 10 told me she didn’t even wrap gifts—she bought big spools of different colored tulle and wrapped each child’s gift with in a different color. This is a gorgeous and simple way to keep things festive but not overwhelming for you.
  6. Choose music carefully. Caleb lives by a very specific sensory diet, which includes keeping sounds soothing and soft. Our favorite Christmas hymns are acoustic renditions from groups like Jars of Clay or our new favorite, Chris Tomlin’s Adore album. When more peppy pop songs come on with shouting snowmen or squealing chipmunks, Caleb retreats to his room. Beautiful, simple arrangements keep him in the room a little longer.
  7. Let go of the idea that the entire family needs to be together all day. If family members don’t understand this, quietly tell them it’s okay and walk away. Don’t apologize or make excuses. If you’re fine with it, those around you will be too. Kids with special needs have so much to deal with and they often need to retreat for a bit to be able to process everything. Give them their space.
  8. For years I kept asking Caleb to help decorate the tree. I bought him new Disney ornaments every year to encourage his participation. When he developed the language, he told me he liked the Christmas tree but not decorating it. He likes the egg nog and spice cookies so he comes for that part and then goes to his room while Sophie and I finish the tree. We all have this image of perfect family moments. There can still be beautiful moments but sometimes the picture needs adjusting.
  9. As much as possible, try to keep the big routines in place. In our home, sleep is the best medicine for Caleb. If he stays up too late, he wakes up several hours early, which only compounds the problem. We have to say no to some events but it is a small price to pay to help Caleb be the wonderful, well-behaved kid that he is.
  10. Listen to your child. One of our favorite things to do when my kids were little was to drive through professional holiday light displays. For whatever reason, this was distressing to Caleb. He likes going through neighborhoods to see lights so we do that instead. We would hire a sitter or leave Caleb with his granny while the rest of us went to the professional display.

It is so important to not let your life be totally defined by a child with special needs. There are some things they will need to learn how to handle. A family with no options for childcare would have to take that child along with them to a light show, even if they didn’t like it. At the same time, everything is magnified at Christmas. When viewed through the eyes of a child with sensory issues, it can be overwhelming to the point that it ruins their day, and in turn, ruin the day of other members of the family.

Balance is essential when dealing with anyone with special needs. If there’s a party at night, keep the day quiet and restful. Cut out things that don’t serve you anymore. Reframe your ideas of what makes Christmas so special.

Try not to feel compelled to compete with Facebook posts of perfect outings or perfectly decorated trees. So often, the pictures represent the one second the entire day that everyone was smiling. Everyone is fighting some kind of battle and none of us are immune. Not every family has a child with special needs, but there are all sorts of things that can disrupt a family. We don’t help each other by competing or comparing.

Always, particularly during a hectic time, guard your family and provide the structure your child needs. When lovely moments happen, stop and take them in. Don’t wait for the next one instead of enjoying the one happening now.

I wish you all a very merry and peaceful Christmas.

The Thing I Forgot About New Year’s Eve

Ah, New Year’s Eve.  Parties.  Confetti.  Reflection.  Hope.

And fireworks.  So many fireworks.

I don’t have anyone I can trust to babysit Caleb, so for many years, New Year’s Eve has been about board games and watching the ball drop on the TV.   It is what it is.

2014 was not a great year in our home, but I don’t want to bore you with all of that.  Let’s just say that last night I was filled with hope for the new year, that perhaps 2015 can be a herald of new beginnings.  A dear friend told me to pray for peace, and that is what I will be doing.

Caleb goes to sleep early so my motley crew and I were well ensconced in a card game around 9:00 last night when the first fireworks went off.  All of us held our breath, knowing the sound, the vibrations and the light would wake him up, and make him angry and fearful.  There is nothing I can say or do to calm him in these situations and it breaks my heart into a trillion little sharp pieces to see him upset, knowing I can’t help him.

Caleb has Hyperacusis, which means his hearing is too acute.  Sounds hurt him.  Add to that sensory integration disorder, and the poor kid rightfully becomes agitated very easily.  I attributed his fear of fireworks to these issues, but I didn’t know until yesterday that the fear goes deeper, rooted in his brain like the tendrils of a tenacious weed.

Yesterday morning, we saw Caleb’s therapist.  This man has helped unlock so much of what Caleb needs to say but is unable to—he’s changed our lives.  Along with fireworks, Caleb has an intense fear of fire trucks and ambulances and his therapist is helping us find a way to cope.  Caleb has unfortunately been in several ambulances and has had the first responders, the fire fighters, visit him too many times.

His therapist told me yesterday that even infants store sensory memory in their amygdala, the part of the brain responsible for memory.  He told me there is a theory that in people with autism, the amygdala is larger and therefore their flight or fight response is exaggerated.  So my poor son has locked deep in his brain the memory of his first ambulance ride, when he was about 12 hours old.  It was an almost two-hour ride.

Now that I picture that sweet baby, who was taken from me so surgeons could repair his heart, I can’t imagine how he must have felt.  I can’t imagine how it was to be born, held and loved for a few hours, then placed in a hospital crib under bright lights and have lines and needles stuck in all sorts of places.  Then his ribs were cracked open and I can’t let myself imagine that pain.  What a horrible way to enter the world.

Caleb’s therapist has told me many times that the opposite of fear is safety.  So every time we pass a fire truck even if it’s just moseying down the freeway, Caleb becomes upset.  A parked fire truck is even worse.  Ambulances racing past us create intense anxiety.  I am connecting the boom of fireworks to these other loud sounds, even if he doesn’t see the connection.  But his reaction is the same, and sometimes worse.  I tell him repeatedly that he is safe, that I am here and I will protect him but it seems that his sensory memory completely overwhelms him, and the words I toss out disintegrate like snowballs.

As we predicted last night, the fireworks roused Caleb from a deep sleep.  He came to me with bloodshot eyes, his cheek lined from where it lay on the pillow.  “Fireworks go home!” he pleaded.  “Show me clock when fireworks go home!”  My only answer, which turned out to be patently false, was, “They will soon, buddy.”  I tucked him back into bed again, hoping the noise would stop.

I know Caleb has to adjust to our world.  I know the people sending off the fireworks didn’t mean to cause chaos in our home.  I read with sadness my friends’ posts on Facebook about how their dogs were trembling from all the fireworks.  I didn’t want to compare Caleb’s reactions to a dog’s because it didn’t seem like an equal comparison.  But I still wanted to find a way to make my home soundproof and vibration-proof and light-proof.

The ball dropped and everyone retired to bed.  An hour later, I was reading and about to fall asleep when Caleb came in, his face creased with immutable fear.  He stood at my doorway, pleading, “Fireworks go home!”

I said, as calmly as I could, “They will soon, honey.”

“What time fireworks go home?” he asked, his voice going up in pitch.

“Soon, I hope, but I am here for you.  I will protect you.  Why don’t you sit in my bed until they stop?”

My words were cut off by Caleb hitting himself in the face with both hands so hard it would be considered assault if another person did that to him.

Fighting back tears, I asked him to come sit by me.  He made it to the foot of my bed and asked again, “Fireworks go home?”

I tried the deep breathing exercise his therapist had recommended.  Caleb got three breaths in before he folded in half, leaning forward and expelling a guttural scream with the velocity of vomit.

Swallowing tears that would only escalate the situation, I told him again that I was here, that I would protect him.  He ran from the room, but I stayed awake, on alert for his next visit.

I suggested his weighted blanket, but he was past the point where that would help.  He was past it when the first firework went off.

By now it was 1:00 AM and I thought the people setting off the fireworks might stop.  But the rumbles and booms continued and Caleb was soon back in my room.  This time he did consent to get under the covers and let me talk with him.  He did listen when I told him I would keep him safe.  He kept asking me to set a timer to let him know when the fireworks would stop which works in many other applications, but without knowing an end time it did no good.  Around 1:15 AM we heard the last boom.  He asked me if it was over and I said, again, “I hope so.”

I’ve said before, Caleb is still making progress.  A few years ago, this cycle would have continued unabated for hours.  It took about four hours this time, but that’s down from five last year.  I just wish there was more I could do.  I thought of going to a hotel somewhere but then laughed at myself, for New Year’s is a global thing.  Maybe the moon?  My friends and I have talked for years about buying an island where only people with special needs could live.  But for now we live with the rest of the world.

If it were sounds alone, perhaps he could handle it.  But he feels the boom.  He sees the light because even though he has room-darkening curtains, he pulls them back and then the lights scare him.  He feels the vibration on his floor.  There is no escape for him.  What torture he must endure.

Today we are reading his favorite books, maybe watching a movie.  Today is all about Caleb and helping him heal from the ordeal of last night.  And I am praying that everyone used all their fireworks last night.