Author: Kate Welch

Ugh. Psych Evals.

Kate Welch2 Comments

First, let me say that we live in a wonderful country with so many resources for anyone with disabilities.  It’s prudent that the agencies which govern those resources make you jump through a few hoops, to weed out the advantageous or greedy.  I get it.  But when there shouldn’t be a doubt that your kid is disabled, it is painful to wade through the paperwork and required tests necessary to secure the resources.

Today was a required psychological evaluation for Caleb.  I fought the agency, begging them to understand how horrible this process is for him.  He knows he should know the answer, but he can’t come up with it.  A geneticist once told me when autopsies have been performed on kids with Caleb’s syndrome, they found cul-de-sacs where healthy brains would have freeways.  There are some neural connections that will never form.  I asked a representative of the agency, “If I gave you an IQ test in Mandarin right now, how would you do?” and was met with uncomfortable silence, then, “I’m sorry, but if you don’t do the test now, it will be required within six years anyway.”  Best to get it over with.

Caleb’s last exam was about five years ago.  His IQ was in the low 40s.  As far as I understand, that is a pretty static number.  There haven’t been any miraculous mental growth spurts or any indication that his score has changed.  But government is government, and I get it.  I just don’t like it, for his sake.

We met with a very kind psychologist who either wasn’t familiar with kids like Caleb or had only been on the job for a few days.  He kept asking questions about sequencing, or asking Caleb to repeat words in a particular pattern.  Caleb kept looking to me, pleading with his eyes for me to translate, as I always do.  It wasn’t allowed, so all I could do was tell him he was doing a great job.

What the psychologist didn’t know was that Caleb’s day started at the dermatologist’s office, having three separate wounds cultured.  On two they used a needle.  On one a tiny knife.  Blood was pouring out of his skin, but Caleb just took it, asking me “All done now?”  He didn’t flinch or scream or anything he may have done 14 years ago.  And I found something profoundly sad in that.

After about 20 minutes, the psychologist said, “He obviously is completely dependent on you.”  In my head I repeated the Mandarin thing but in the office I just sat calmly and looked back at him.  Then he told me that I was distracting Caleb (which I definitely was) and asked me to sit behind him while they worked on a series of puzzle matching activities.  It is excruciating to watch any child shoot for the hoop and miss, so I sort of zoned out during this part.

I was watching doves on an adjacent building as they navigated the steep slope of the roof to get to the goodies in the gutter.  More doves from another building saw this and all flew over in a great flutter of wings and chirps.  Just as I was beginning to wonder, “If they have wings, why are they walking?  Why don’t they just fly down?” several of them took roller-coaster dives to get to the better bounty on the ground.  I was pondering whether they were scared while falling or if they knew their wings could save them, and then extrapolating how we humans might accomplish so much more if we lost our fear of falling when the psychologist told me we were done and we could leave.

“I have all I need,” he said, with a kind smile.

We had been there for 45 minutes of a two-hour appointment.  As we walked out, I put my arm around Caleb, praising him and telling him how proud I was of how hard he worked.  From the corner of my eye, I saw the psychologist watching us.  I don’t know what he thought, of course, but I hoped that perhaps the next time he meets a young man who so quickly can’t meet the demands of a test, he will let him go sooner.  It makes me weep that this world lacks the tools required to mine the vast intelligence that resides beneath the still pond of Caleb’s mind.  I railed against the injustice of forcing him to conform to our world, our rules, our standards.

I don’t think any one of us could ever live and thrive in his world the way he has in ours.

The Thing I Forgot About New Year’s Eve

Kate Welch3 Comments

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.

Battles

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As battles go, this wasn’t a big one.  Caleb had been fighting a skin infection with a topical medication but while under someone else’s care, many doses were missed so when I got him back, it flared up with vengeance.  Caleb was in pain.  That is trigger number one for any mom.

Due to exceptionally high respiratory and flu viruses in our area, the doctor asked us not to come to the office, lest we be exposed to these rampant diseases.  She was very concerned for Caleb with this infection and called in a high dose of an oral medication, a much higher dose than is usually prescribed.

The call from the pharmacy came an hour or so later.  Insurance wouldn’t pay for the medication.  Caleb has Medicaid and private insurance, so this was rather odd.  At this point, I was gearing up for a fight.  By the time we walked through those automated doors, I was marching with a purpose.

By the time a special kiddo is 18, we parents have been well-trained.  Countless IEPs, well-meaning but sometimes unconcerned doctors, hospital stays where orderlies who are just doing their job keep trying to take blood that was drawn an hour ago—these all lead up to a battle mindset.  Even when the IEP goes well, even when the doctor sees what you have been showing them, you still prepare for the worst.  You never know what waits behind the door.

I carry a binder that is about four inches thick.  In it are IEPs, attendance records, medical records, lab reports, psych exams, notes and current school work that Caleb has done.  This is my shield.  Whenever there is a question of how long a condition has persisted, I have the lab work or the written diagnosis to show the doctor.  The binder allows me to be an efficient medical manager for Caleb.

Our pharmacists know us.  They know me by voice when I call.  They gave us a Christmas card this year.  But when we walked up to the counter, I immediately saw the problem.  The nice young man to whom I had spoken on the phone was ready to help, but he was a new hire.  I quietly asked him if he could tap Ashley, who was working the drive-through window, because she knew the magic sequence to navigate to make Caleb’s meds be covered (legitimately) through the two insurance companies.  It didn’t work, even with Ashley’s considerable efforts, so we both agreed to call the doctor’s office the next day.

Caleb and I left with two doses, at least a start to help him feel better.  But I noticed as I walked to the car that I slumped.  I sort of crumpled into the car seat and felt such defeat.  I was suddenly exhausted.  I read once that it takes more energy for a boxer to swing and miss than it does for him to swing and make contact.  Even though this wasn’t a full miss, it took the wind right out of me.

Every battle that we fight for our children has the potential to fill us with victor’s energy, or to drain us and leave us with battle fatigue.  For me, even the good ones drain me.  Because we never know how a battle will go, even the small ones, like a trip to the pharmacy, require us to suit up, stand tall and be ready to fight.  We never know when the next battle will present itself.  We can’t know the scope until we are already in the trenches.

Even though Caleb is the one physically fighting the infection, I find myself limp from worry.  Regular days drain me with their typical load of giving medication, bathing, shaving and dressing my son.  I keep the house calm and quiet to help keep him calm and quiet.  Sometimes even the small battles tip me over and I’m unable to get off the couch for a bit.  I am making an effort to take better care of myself so that I can better care for him, and so I am healthy to fight when the battles arise.  I exercise.  I take Epsom salt baths twice a week.  I’m trying to eat healthy food, rather than the comfort food I run to whenever the days beat me up.  In short, I’m trying to care for myself the way I care for Caleb.  I’m trying to be the healthiest I can be so I can take care of this wonderful kid who needs constant care.

To quote Dwight D. Eisenhower: “In preparing for battle I have always found that plans are useless, but planning is indispensable.”  Here’s hoping we all make plans that help our kids.

Anything But Toy Story 3

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So it’s Christmas time and we have our tree up and lit and it looks gorgeous.  Caleb really could not care less about it—he really wants the presents that are under the tree, but until then it’s just furniture to him.  I used to try to get him to help decorate, and even bought him a new ornament each year to try to encourage his participation, but a few years ago I figured, “Hey, it’s not his thing.”  I don’t think most teenage boys are chomping at the bit to decorate their trees, and I owe him the courtesy I would show any of them who declined.

Today I was dusting nearby the tree.  It is next to a window with wooden blinds.  Somehow, while I was dusting, Caleb’s Mr. Potato Head ornament became entangled with the string controls for the blinds.  I was laughing (by myself) pretty hard so I posted the picture on Facebook with the following caption: “Woody.  Buzz.  On.  My.  Go.”

I was still chuckling after I finished the rest of the cleaning so after I showered Caleb and got him into some fresh pajamas, I suggested we watch a Toy Story movie.  Any Toy Story movie.  I told Caleb to choose while I was showering.

He picked Toy Story 3.

In addition to the wonderful bright star that is Caleb, I also have a beautiful, wonderful, brilliant daughter named “Sophie” who is away at college in another state.  It thrills me to the depths of my soul that she is able to have this opportunity.  It thrills me that she has managed to escape from the rather difficult world that Caleb and I inhabit.  As much as I stand behind her, encouraging her and helping propel her along, I miss her.  With every breath.  She knows not to let me watch Toy Story 3.  But she wasn’t here to stop the carnage today.

I made Caleb his favorite soft pretzel and he and I got under our favorite big blanket and hit “play” on the movie.  I was doing okay.  I was thinking I could make it through this time.  My eyes filled up when all the toys realize they are drifting down toward the junk yard fire.  Caleb, who senses every hair on my head, instinctively looked at me during that shot.  I proudly smiled at him and said, “It’s okay.”

Allow me to back up for a second.  When I say Caleb senses every hair on my head, I am not exaggerating.  I’ve been told Caleb has face blindness and that he feels others’ emotions too deeply.  They hurt him.  Caleb can read my emotional temperature with head-aching accuracy.  I spend the hour before he arrives home from school picking off the emotional cobwebs of the day and putting myself into a happy place.  This was the suggestion of several therapists—if Caleb’s afternoon is easier, so is everyone’s.  Often, I fall apart after I’ve read him his bed time story and tucked him in.  But for the three hours he is here after school, it’s all happy times.  With all that he struggles with, it is one of the most important ways I take care of him.

So… back to the movie.  Right about when the toys were washing themselves off with the garden hose, I felt it.  Tears pricked at my eyes, and I felt the heartache of Andy (and Sophie) leaving for college, like it was the first time I saw the movie (during which my 10th grade Sophie incredulously whispered “Mom, you HAVE to stop doing that!).  Maybe I’m still working through Sophie being gone.

Now having had a few hours to digest the episode, I think I was definitely mourning Sophie being gone, but I’m also mourning that Caleb, who should be graduating this year, will never go to college.  All the kids who were babies when he was are moving on to other things—not all are going to college, but they are all graduating high school.  If Caleb ever lives on his own, it will be in a group home, something he has told me with ferocity he is nowhere near wanting to do.  All the dreams I had when I was pregnant with him (you know, Heisman trophy winner, debate team captain, valedictorian and salutatorian since he was so gifted) are settled around my feet like wilted confetti.  I’m learning to step over it, but it is hard.

Until this: I was thinking back to when Toy Story 3 came out in the theaters.  Yes, Sophie was annoyed, but Caleb kept leaning forward in his seat at every emotional moment.  When he saw my tears, he hit himself in the head a few times.  This was an improvement over the decade leading up to that moment, when my tears automatically caused his tears.  He would run screaming from the room, until I mostly learned to swallow tears.  But that’s not healthy so I started to let myself cry around him, telling him I’m okay, and it’s okay for people to cry.  And this afternoon, for the first time, he was accepting of that.  Caleb wasn’t happy I was crying (we did have to call his sister on the phone—she told him it was okay, too) but he didn’t scream.  He didn’t hit himself.  He cycled through his usual panic modes—asking for no bedtime story (a self-imposed punishment or communication that he just can’t handle me at that moment) but then he came back to center.

This is huge progress and it almost happened without my acknowledgment.

While I won’t be watching Brian’s Song or Heaven Can Wait (that one slays me every time) I am sitting here so proud of Caleb.  And it’s vindicating too—I was told years ago that he would stop learning, stop maturing, but he just made this huge milestone at 18!  As I have done Caleb’s whole life, I listen to the experts and take their words with all respect, but I also know this young man better than any of them.  And I know he’s not finished yet.

Welcome!

Kate WelchLeave a comment

Over the past 18 years I have learned so much about being the mom of a special needs kid from wonderful women. I’d like to share what I’ve learned with you, and let everyone out there know they are not alone. My son and I have been stranded in hospitals, spent long weeks where he was ill without a diagnosis, survived countless blood tests, broken bones and mental and behavioral problems. Maybe what we’ve been through can benefit others on the same path.

Caleb’s favorite Disney character is Peter Pan. It hit me one night as I was going to sleep that he will always be Peter Pan–he will never completely grow up. That leaves us living in Neverland and I have no clue how to navigate this beautiful, scary, isolated place.

Here’s a little bit about Caleb: he was born on time, almost 10 pounds, but he was blue. Within 12 hours of his birth he was taken to another state to have open-heart surgery to correct an interrupted aortic arch and a VSD. I learned at this time that he has 22Q Deletion Syndrome, a random event that caused him to be born without a piece of his 22nd chromosome. It is a hugely significant piece, and has been the route of his many challenges. Caleb is not typical of the syndrome so I won’t be focusing on it as much as I will focus on his many challenges.

Caleb is missing 1/3 of his immune system, so when he gets sick, he gets very sick. A few years ago, a routine virus kept him homebound for over a month. He has been fighting folliculitis, a staph infection of the hair follicles, for two and a half years. He has broken his wrist and his femur, because he lacks the instincts the rest of us have to break a fall.

Around age four, Caleb was diagnosed with autism and OCD. He has some stimming behaviors and some emotional blocks, but he is very social and seeks other out. He knows every make of car by their logo, and this is generally his first question to strangers–his attempt to bond with them. Caleb’s language is severely delayed and I act as his translator. Mentally, according to the Wechsler charts, he is extremely low functioning.

Caleb’s most frightening challenge is that he can’t regulate his body temperature. This means if he gets too hot or too cold, he could die. On the rare occasions he has overheated, it takes days to get his temperature back to normal. Fevers are extremely difficult to manage. It is easier to warm him up with blankets or turning up the heat in the home. But summer heat is devastating, and I live in constant fear of what it could do to him. I keep an ice vest in the freezer at all times, he has special units set up at school in front of his desk, and I am never more that half an hour away from him so I can swoop in and put him in my freezing car to help him cool down.

Here’s the beautiful part: Caleb is a sweet and loving child. He tolerates his many specialists with patience I can’t imagine. Many of them tell me he is their favorite patient. Caleb is always popular at school and his teachers love his positive attitude and how hard he works. Caleb is mobile except when he overheats. Caleb works extremely hard to try to communicate what he wants, without the benefit of complete language, and he accepts unbearable frustration.  Due to years and years of very hard work, I am able to take him to any restaurant, movie, play or church. He will let me know if he needs to leave, unlike when he was a young child and would just scream.

Here’s the scary and sad part: Caleb can’t communicate everything to me and my heart breaks for him. His language is so limited and he wants so badly to please that sometimes he compromises himself where he doesn’t need to. I worry about what will happen to him when I’m gone. I worry how he will function without his translator and walking medical encyclopedia.  I worry almosts every single second he is not with me, as much as I know that time away from me is vital in his ongoing development.

I completely adore this young man. That is absolute.  But there is evidence that caregivers at this level have shortened telomeres (the tips of our chromosomes).  This level of stress affects us down to our DNA.  So in addition to caring for my son, I need to learn to take care of myself.  We all need to do that, but when so much time and energy is devoted to the care of another, sometimes we let ourselves slide and I know I need to stop that.  Maybe you do too.

So, follow me as I seek that second star to the right and learn to navigate this unknown but navigable world.  I love the image of Peter Pan, Wendy, Michael and John holding hands and flying through the night sky.  Sometimes it’s easier to see where you need to be when you are flying above and looking down.

Like the Darlings and their favorite friend, we are all much stronger when we join together.