Author: Kate Welch

What Caleb Has Taught Me About Being a Mom

Kate WelchLeave a comment

With Mother’s Day a few short days away, I have been wondering all week what I should write about how to be a Mom to a young man like Caleb. I was humbled when I realized I know nothing about this—Caleb has taught me everything I know.

I’ve written before about the expectations I had when my son was born. It was all about my expectations for him. I dreamed of shuttling him to various sports (I don’t even like sports so I don’t know why I even thought this). I dreamed of his high school graduation day (when he would undoubtedly give a valedictorian speech) and his college graduation (summa cum laude, of course) and his wedding and then whatever fabulous job he would land.

None of that was about him. All of that was about me bragging about what an amazing job I had done raising him.

That is not what motherhood is about. Caleb has been extremely patient in teaching me how to be a proper mother.

The day Caleb was born he was taken from the hospital by ambulance to another state so they could perform open-heart surgery. I managed to downplay this event in my head, telling myself he could still be a world-class athlete. A few days later, when I was allowed to leave my hospital and join my baby, I lost my breath when I saw him hooked up to so many machines.

He was laying on his back, a board taped to his hand so he wouldn’t pull out the IV. He was naked but for a diaper and wore a permanent grimace. I begged to hold him or cover him with a blanket but the Neonatal Intensive Care Unit has very specific rules and I wasn’t allowed to at that time.

As a four-day old infant, Caleb taught me about strength.

The day of Caleb’s open-heart surgery, I was terrified, but then I did something unexpected. I was in an empty waiting room and I held my empty arms like I was holding him and I said a prayer: “God, this baby belongs to you. If you want me to raise him, help him survive this surgery and I will raise him to love you. But if you need to take him home, I understand.”

I had never uttered anything like that in my life. It gave me overwhelming peace and the strength to stay in a chair next to his crib for the three weeks after his surgery. I never put him down, trying to make up for the four days where nobody could hold him.

Caleb taught me he doesn’t only belong to me.

At six months of age, Caleb needed to be sedated for an MRI to check the healing of his heart. The cardiologist gave me the typewritten orders to give to the anesthesiologist. On the short walk between offices, I memorized the orders and before the meds were administered, I asked for confirmation of the meds and doses. “Are you a doctor?” asked the bemused anesthesiologist. “No,” I answered, “just looking out for my baby.”

Caleb taught me that his health depends on my being a Caleb Expert.

The first two years of his life, due to a missing thymus (1/3 of a healthy immune system, which is missing in many 22Q Deletion patients), Caleb was sick at least two weeks of every month. This was an extremely lonely time because we couldn’t be in public. But even when he had a 105 fever, Caleb smiled and tried so hard to interact with the rest of his family.

Caleb taught me about courage during adversity.

During this time, we had nine therapists in our home every week trying to get him caught up on missed developmental milestones. Some he made, some he never did, but through it all he tried so hard. In the back of my mind, I compared his development with my friends’ babies. This year, the kids his age are graduating high school. Caleb is in self-contained classes and will only receive a certificate of attendance when he finishes high school in three years.

Caleb taught me to let go of pride.

When Caleb was four years old, a doctor ran his first IQ test. Like many other parents of special needs children, I was still living in the bubble that my child would break the barriers. That morning, the doctor casually threw out what she thought I already knew: Caleb is mentally retarded. I honestly didn’t know and those words were a knife to my heart. I couldn’t let Caleb see my disappointment so we stopped for ice cream on the way home and I held my tears until he was sleeping soundly that night.

Caleb taught me that new diagnoses don’t change who he is and don’t alter his sweet soul.

To this day, whenever we are in public, people stare at Caleb. He is a handsome boy, six feet and an inch tall and he lives in custom-made Disney shirts. Caleb is a happy kid, which he exhibits in typical autism flapping or rocking behaviors. He has a high voice (due to 22Q) but the deepest laugh and the contrast causes many people to look. Some people look with kindness, some look with annoyance, but I have learned to avoid all looks (which isn’t good when we miss the sweet looks). Caleb picks up on my every emotion, so the more even I stay, the happier he is.

Caleb taught me that he is all that matters.

I am not a perfect mother. I get exhausted and depressed from the average of 60 doctor appointments we go to each year. I get frustrated when he and I can’t communicate, but I do my best to keep my tone even, my words kind and soft and my praise constant. I don’t cry when he pushes me away because my tears destroy him. This young man deals with more adversity in a minute than I do in an entire day and it is my honor and privilege to make his world comfortable and happy.

Caleb taught me that it is not about me. Being his mother means meeting his needs, not my own.

Groundhog Day and Its Evil Twin

Kate WelchLeave a comment

It is a long-standing inside joke in the autism community that the movie Groundhog Day is a literal interpretation of our lives. Routine is the backbone of a healthy autism household so we parents have learned to adapt. It works most of the time.

School days begin with me waking Caleb at precisely 7:30 AM. Actually, I don’t wake him because he prefers to have two of his favorite rubber ducks knock at his door (if you think their orange rubber bills don’t leave a mark on a painted door, think again, and don’t try this at home). They knock in a specific composition that resembles “Skunk in the Barnyard, Pee Yew.” I have no idea how this started. Then I open the door.

Caleb sits up, grabs his iTouch and searches for the Classic Duck ringtone. He then motions for both ducks and holds them in one hand while they look at the iTouch as the tone rings out, almost like they are communicating with the Mother Ship. I know how this sounds. I know.

I retrieve the ducks, ask Caleb to put his pajamas in the hamper and proceed to his bathroom. Caleb has serious balance challenges, so while he’s changing, I put down an anti-slip mat that needs to be hung-dry every day or it grows mold. I start the shower then begin his hygiene for the day. I won’t go into all detail, but this involves everything from head to toe. Caleb can perform some personal care functions but not as thoroughly as an 18 year-old needs to have them completed. I shave his face (and cry every time I cut him), wash his hair, brush his teeth—you get the gist. The two favorite ducks accompany him into the shower, standing guard at the top of the shower organizer, in what he calls their stroller.

At 7:45, a different duck knocks on the shower curtain to tell Caleb it’s time to get out. This makes him laugh and turn off the water. While I’m drying him off (people with autism often can’t understand how to dry themselves off completely) the ducks take watch on the counter. I finish the after-shower hygiene (including a body spray because Caleb has girls to impress) and send him to his room to get dressed.

During this time he will ask me, every morning if he can bring The Brave Little Toaster to school for their Friday movie day. The answer always has to be, “(Your parapro) says that’s for babies.” Then he asks if he can bring Toy Story 3. The answer always has to be “That makes (your teacher) cry.” This makes him laugh too.

To help Caleb dress himself, I installed a closet organizer with clothes divided by short and long-sleeved shirts. I tell him which length he will need and he takes great pride in knowing into which side of the closet to reach. With modifications such as drawstring waists and an infinite variety of t-shirts, including custom 2 XL Disney shirts which are his favorite, Caleb is able to dress himself. Lock Laces (www.locklaces.com) allow him to put on his own tennis shoes. Tying them will likely never be an option, so this amazing invention, originally created for runners, gives him a boost in independence.

By 7:50 we are downstairs and ready for the second part of getting ready. I set him up with a DVR-recorded episode of Sid the Science Kid while I hand him a water bottle and get his morning medications ready. Caleb can’t swallow pills so I crush them and put them in a shot glass of chocolate milk. With another nod to the temperature regulation issues, Caleb needs four ounces of chocolate milk and four ounces of orange juice in addition to the water, so he arrives at school well-hydrated. Prior to this, I would load him up with a sugar free sports drink, until it began rotting his teeth because it is 11 times more acidic than soda.

We were blessed with the world’s best bus driver for almost two years, until he had to retire a little over a month ago. Caleb and I miss him every day. Not only is this man kind, respectful, warm and loving, he also has a military background and you could time his arrival to the minute.

The same cannot be said for his replacement, which brings me to the evil twin of Groundhog Day: any change in routine.

As cloying and exhausting as it can be to submit to a rigid routine, it is horribly chaotic when that routine is disrupted. The new bus driver’s arrival varies from almost on-time to over 30 minutes late. With our former bus driver, Caleb never was able to watch an entire show and that was fine with him. When he would hear this distinctive whoosh of the bus’s air brakes, he would often stand, smiling already and say, “Oh, you gotta be kidding me,” then dance out to the bus, to the delight of both the bus driver and his angel of an aide.

This morning my friend insomnia woke me around 4:00. I decided to take advantage of this by getting a workout in early. This is not as simple as it sounds. It’s not part of the routine, and if Caleb is woken by this, he will come downstairs, eyes reddened from being disturbed while sleeping and say, “Not tomorrow.” So I was stepping as lightly as I could, missing half the instructions on the workout video because the volume was on level two, when the phone rang at 6:30. Caleb’s angel bus aide was calling to tell me that the new bus driver called out sick, and she had no idea when they would be arriving today.

With a typical kid, I would keep to the regular schedule and drive him to school. Caleb, like many kids with special needs, lives for the bus. If he has a doctor’s appointment, I have to schedule it so he still gets his two bus rides in or it will not be a good appointment. So this morning, I had to push everything back in an effort to keep Caleb from knowing the bus was late. “Late” is one of his least favorite words and the few times I have used it have launched a tirade of “no late tomorrow,” “I don’t like late,” and “late go home.”.

Alas, Caleb came down, said, “Not tomorrow” when he saw me exercising and needed to know when he was getting in the shower. I resorted to “soon” and pushed the whole routine back to 8:00, hoping the bus’s arrival would cooperate. His science show ended and he stood and said, “Where’s bus?” I said, “Soon” again, and, thank God, it did arrive within a few minutes. The axis of Caleb’s world fell back into place.

So which is worse, the drudgery of Groundhog Day or scrambling to fix unpredictable routines? This round goes to Groundhog Day and serves as a humbling reminder of why we live the way we do. Routine makes Caleb feel safe and secure and gives him control in a world that must feel constantly out of control for him.

That is all that really matters.

Sometimes That Handicapped Permit is for a Kid

Kate Welch1 Comment

Something awful happened to my kids yesterday. Unfortunately, it is not an isolated incident, but it was the first time it happened without Mama Bear there to handle the situation.

Caleb’s 19 year-old sister Sophie thought it would be fun for her to take him out for a haircut, pizza and a quick stop at the grocery store.  Caleb’s mental age tests around 5 years old, but there are aspects of him that respond exactly like an 18 year-old young man. Getting a haircut with his sister is infinitely cooler than when Mom takes him, so he left the house with a noticeable spring in his step.

The haircut went well (our local salon is staffed with awesome stylists who always greet him by name). Caleb, who likes to have his hair cut every three weeks to keep a military-style buzz in shape, walked out of the salon full of the confidence a great haircut brings. He and his sister had fun at the pizza parlor. Sophie called to tell me there was one more stop and they’d be home soon.

The next time I saw her, her face was bright red, her eyes were overflowing with tears and she was crying so hard she could barely catch her breath to tell me what had happened. Caleb got out of the car and told me he needed to call my dad, whose strong, assuring voice can calm him in almost every situation.

My daughter is sadly used to having her needs come second to Caleb’s so she sat crying at the kitchen counter while we dialed my dad. She knew I couldn’t talk to her until Caleb was settled back down. My dad said his usual reassuring words to Caleb; Caleb took a deep breath and went to his room to play on his iPad.  Then I got the full story.

“We were accosted in the parking lot,” she cried, her voice cracking from raw emotion.

As they were leaving the grocery store, my daughter noticed a man who appeared to be in his late 70s glaring at them from a handicapped parking space near where she had parked. She didn’t think much of it until he got out of the car and walked up to her, asking, “I’m wondering what the handicap is here?”

Sophie is a really tough cookie, the result of being born with an iron constitution and spending more than half her life in hospitals and doctors’ offices with her brother, steeling herself for each new complication or diagnosis. She has a deep empathy for her brother and has come to his defense more times and in more ways than any kid should ever have to do.

Sophie looked this man in the eye and said, “It’s none of your business,” as she helped Caleb, who struggles to get in and out of cars.  She got to her seat and was buckling her seatbelt when he banged on her window and said, “Really.  I just think it’s funny that you’re parking here.”

Aside from being randomly confronted while using a completely legal handicap placard, Sophie was shaken by this man physically inserting himself into her space. Balancing her reaction with trying to keep Caleb from having a meltdown, she shouted back in extremely colorful language, “You have no idea about what my brother has been through! You have no right to come here and ask me what’s wrong with him! Leave us alone!”

At that, the man walked away, but the damage he inflicted hovered like a cloud over my children as they made their way home.

State laws regarding the granting of handicapped parking permits vary, but they always require a form signed by a doctor. Caleb qualifies under four different criteria outlined by the American Heart Association. He qualifies neurologically due to his temperature regulation problem. He qualifies physically because of bone and joint problems. I’ve heard that autism alone can also qualify one to receive a permit, but with so many other qualifying conditions, we have never pursued a permit based on that.

I have been yelled at in parking lots, questioned just like Sophie was, and even had someone leave a note on my windshield telling me that the only handicap I appeared to have is mental retardation. A good friend of mine, whose daughter has cerebral palsy and uses a wheelchair has also been accosted by strangers demanding to know what right she has to use those spaces.

All I can conclude is that these ignorant, rude people never stop to think that perhaps that handicapped placard is for a child. They see the driver pop out of the car and assume we are abusing the privilege of a permit. No one wants to ponder that a young kid can face such limitations. And people assume that a mobile person like Caleb who can walk on their own isn’t handicapped, even though the man who went after Sophie was mobile himself.

I am blessed by a vast network of other moms who have kids with special needs. None of us have ever even dreamed of using that permit when our child is not with us. In fact, Caleb’s latest permit (they expire every four years) has his picture on it and I could be ticketed if I used it when he’s not with me. When the spaces are all taken up, some of us have to park way in the back of the parking lot just so we can get the ramp to extend out of our van so our child can get out of the vehicle in their wheelchair. When ridiculous people park in the lined spaces between the handicapped parking spaces, we are out of luck. When obnoxiously selfish people park in these spaces with the car running (“My wife just had to run in the store and will be right back”) we are out of luck.

The saddest part of this story happened after they got home, after Caleb talked to my dad. Sophie went to Caleb’s room and tried to hug him and tell him everything was okay. He put one arm around her and then pushed her away, a completely typical reaction for someone with autism. Sophie started crying again, whimpering, “I just wanted to help you. I just wanted to protect you” while he shut the door.

If you are ever tempted to question the legality of a handicapped permit, please leave it to the police. Not all handicaps are visible. No one deserves to be treated the way my kids were yesterday.

My Kid is Too Special for Special Olympics

Kate WelchLeave a comment

Yes, you read that right.  Caleb is too special for Special Olympics.

In addition to the chromosome deletion syndrome, autism, immune issues, heart and mental defects, my sweet boy will die if he gets too hot or too cold.  He can’t regulate his body temperature at all.  When he was a baby (before we knew about this condition) his fevers would always shoot right to 105, and then he would have a febrile seizure, which was his body’s effort to return his temperature back to normal.

I had Caleb tested when he was four, when I realized that he never seemed to sweat.  The doctor put a combination of iodine and corn starch on all the places one would normally sweat, and then she set him under two heat lamps, with two wool blankets for 20 minutes.  The iodine mixture turns black when wet.  After all that time, there was not one drop of sweat.  Caleb’s case goes further than simple Anhydrosis (the inability to sweat) because he can sweat a little on his feet, and sometimes a little on his forehead, but it’s not enough to cool him, the way sweat usually works.  I was offered the option to have surgeons cut into his sweat glands and see why they don’t function properly, but since there is no cure, there is no reason to put Caleb through yet another surgery.

A few years later, I was told by his neurologist that if Caleb were to completely overheat, he would literally cook his organs from the inside.  At 18, his fevers still routinely go to 103 and require alternating doses of ibuprofen and acetaminophen around the clock (one dose of each medicine every two hours, because neither works on its own).  It takes Caleb several days to get back to his normal 97.5 degrees if he overheats, so I spend the majority of my time monitoring him for any change in temperature.  If caught in the early stages, Caleb is quick to resolve.  I don’t ever let it get past that point, but I do keep an ice vest in the freezer at all times, ready to go if, say, the electricity went out (we are on a priority list with our electrical provider).

Caleb’s IEP is full of references to the warning signs of overheating—the first is redness in his hands, arms or legs.  This requires immediate attention.  Caleb can only communicate if he feels cold, not hot, so those who care for him need to be extremely vigilant. His current classroom has one portable air conditioning unit in front of his desk, and a backup right next to it.  There is no reason for his entire class to be kept as cool as he needs it and it might even be dangerous for some of the students, so this system works perfectly. He can’t attend PE classes with his classmates because the gym is too hot.  His teacher (again, I love this woman) keeps her car parked outside the classroom in case there is a fire drill—she sits in the car with him with the air on full blast while the paraprofessionals stay with the rest of the class.  I am always on call to come and get him if he overheats.  Our home is always an ice box and is always a safe place for him to retreat and recuperate.

Two schools ago we were not blessed with such a dedicated teacher.  A nurse sent home a two-week temperature log for his classroom, with recorded temperatures 10 or more degrees over what is safe for Caleb.  I immediately withdrew him from that school, wrote letters all the way up the chain of the school board and had Caleb assigned a homebound teacher so he could go to high school that fall.  He was blessed with a wonderful teacher at that high school too.

A few years ago, at a special needs day camp that Caleb regularly attended, they were having a barbecue party.  Extra volunteers were on hand and somehow Caleb got one who didn’t understand his condition.  She felt sorry for him that he was inside when the other kids were outside waiting for their hot dogs, so she took him to be with them.  In all the chaos, no one noticed Caleb progressing past the redness.  When they did, they tried to get him to drink water, which he promptly threw up.  By the time the nurse was able to call me, seconds later, she told me it looked like he had a seizure.  I rushed him to the doctor, but by then he was completely resolved.  Caleb is also too special for some special needs camps.

We deal with the heat as best we can.  We’ve lived in several states and it’s safe to say summer is hot just about everywhere, so we just deal with it.  Where we live now, there is the highest degree of window tinting on every window, so the sun’s heat is reflected back out.  In Caleb’s room, the blinds are always down, and backed up by blackout curtains.    I purposely bought a home where most rooms face north/south so we don’t get direct heat on most windows anyway. Ceiling fans run all the time, year-round.  I have a white car, rather than a darker one that would absorb too much heat, and the windows are tinted on that too.  Caleb only dresses in light-colored shirts.  There are modifications to every aspect of our lives, but that’s just how it is.

So how does this make him too special for Special Olympics?  The event takes place tomorrow at a local college.  While today is 72 and cloudy, tomorrow is supposed to be 85 and partly sunny, with humidity hovering around 60%.  80 degrees is the cutoff for Caleb.  His IEP clearly states that at that temperature or higher, he can only be outside for 10 minutes and even then he needs to be monitored.  I’m thinking as I write this that Caleb may have crossed the line from having special needs to being medically fragile.

The only bus available tomorrow for transportation to Special Olympics is not air conditioned, so his teacher asked if I would take him, which of course I would.  But since the events don’t start until after 12:20, there is very little chance that Caleb can stay that long, even with me following him with the ice vest (which, like any other 18 year old guy, he hates).  His teacher and I decided it best not to take any risk with him tomorrow, so he will be staying home with me.  Fortunately, Caleb took the news well and is looking forward to lunch with his awesome sister and her amazing boyfriend.  I am thanking God for those two as I write this.

We send our thanks to everyone who works so hard to make the Special Olympics the success that it is, and we send our warmest encouragement to every athlete who will be able to compete.  We won’t be with you, but we will be cheering you on from afar.

Caleb and the Public Bathroom Dilemma

Kate WelchLeave a comment

I just read a very revealing blog by Lisa Quinonez-Fontanaz at www.atypcialfamilia.com about taking her 9 year-old son with autism to the ladies’ room.  I tried several times to comment on her blog but with my limited tech skills, my response wouldn’t post so I’m going to tackle the subject here and hope that she sees it at some point.  I praise her for bringing a very difficult subject to light.

I have been taking Caleb with me to the ladies’ room his entire life.  Since I became a single mom a few years ago, I’ve had to do this all the time.  This will not end for the rest of his life.  Caleb is six feet tall and I know he must shock women when we walk in, but we don’t have a choice.  At all.

In addition to autism, which alone could make a solo trip to the men’s room difficult, Caleb needs help dressing and undressing.  He can’t tell if someone before him has peed all over the seat and not bothered to clean up after themselves and he would sit right on it.  He’s missing part of his immune system, so exposure to bodily fluids could create a huge medical problem for him.  Caleb has fallen on a wet floor before and broken the braces off his teeth.  Other falls have resulted in broken bones. Further, while I believe the vast majority of people are kind and helpful, there is always the chance that someone in a men’s room could take advantage of Caleb and there is no scenario where I would think of subjecting him to that.  On a lesser note, pre-teen and teenage boys have laughed and pointed at Caleb on many occasions but I have been able to protect him by removing him from those situations.  He would be unforgivably vulnerable entering a men’s room by himself, and he wouldn’t be able to communicate to me if anything untoward happened.

It would take too long to communicate this every time we walk into a women’s bathroom so I simply look straight ahead and guide Caleb to a stall (usually the small ones because someone always feels entitled to use the handicapped stall).  I speak in modulated tones as I accompany him into the stall, hoping to give the others a clue to our situation by saying, “Okay, buddy, you’re all set.  Let me know when you’re done.”  In that tiny space, I turn around to give him as much privacy as possible in that tiny space.  When we exit, I hold his hand and help him wash his hands and get paper towels or use those awful air-dryers that scare him as much as the vacuum at our home.

Since Caleb was a young boy I have mastered the art of avoiding all eye contact with the public, to the point where friends have to walk up and grab me to get me to notice them.  My friends are awesome and they understand why I do this.  But I have had people actually follow me through a grocery store, hoping to let me see their grimaces.  I just ignore them and we go about our shopping.  Caleb has an extremely high voice and we get lots of stares for that too, but we just push on.  He has mostly given up the hand-flapping that so many kids with autism employ, but he still rocks vigorously back and forth and that gets the starers and whisperers going.

Whenever an establishment has a family bathroom, I seek out and thank them for providing this accommodation.  Those bathrooms don’t just apply to kids like Caleb—they help anyone who needs help in the restroom, of any age and gender.  I don’t begrudge the young moms with three kids in tow who go in there—I’m sure it’s an easy way to corral them and keep everyone safe.  It would be wonderful if more places had these rooms, but for now I will take Caleb into every women’s room, despite the glares, whispers, outright laughter and the comments they don’t think I hear.

When I really think about it, I don’t understand the big deal.  Except for the occasional woman who thinks locking the stall door is an option (always a fun surprise for both of us), womens’ bathrooms are very private where they need to be.  There are no exposed stalls and the only contact anyone would have with Caleb is at the sink.  He has been fully trained in proper decorum in the bathroom and doesn’t speak to or make contact with anyone.  If they look just a little bit closer it’s very easy to see that Caleb has significant special needs.

If I didn’t have Caleb, would I be one of those women who stared aghast at someone bringing in an adult with special needs?  I don’t know, but I would hope not.  I would hope I would show some compassion and just go about my business and leave.  I hope I would realize that no one would bring a male into the women’s bathroom unless they absolutely had to.  I hope I would look with kindness on the mother and child and not add to the enormous stress they must be facing by having to enter the women’s room.

I hope that attitude soon eclipses the one where people are cruel and condescending.

Autism and the Terrible, Horrible, No Good, Very Bad Unexpected Anything

Kate Welch2 Comments

I wanted today’s blog to be all about the amazing, wonderful, spectacular Night To Shine Prom that Caleb attended on Friday night.  It was one of the most beautiful things I have ever witnessed.  Caleb and all the other attendees were ecstatic and I swear you could feel the joy that emanated from each of them.  The room actually glowed.

But autism has reared its ugly head once again.  That’s how it is.  You can have such great highs and then, sometimes only minutes later, they crash into a million trillion tiny sharp shards.

Caleb is absolutely obsessed with weather.  He checks his iTouch and my phone constantly, looking for the icons on the weather app.  He doesn’t understand that the icons represent really good guesses, not guarantees.  He can’t understand Fahrenheit or even the numbers, but those icons are crystal clear to him.

Particularly the one that shows snow.  Caleb hates snow.  He hates when school is cancelled for any reason.  He loves school—everything about it.  He hates when his routine is disrupted.  He hates when we are forced to stay in the house, even if we didn’t have plans to go anywhere.  Snow represents all of the things that cause him great distress.

We live in an area of the country that doesn’t receive much snow.  If I had to guess, there is maybe one storm a season.  We don’t have enough snow removal equipment in our town so if it snows, it stays on the roads, usually on top of an ice layer, until the weather warms enough to melt it.  I have lived all over this beautiful country, and I know how to drive safely in snow, but I won’t venture out on icy roads.

These are the conversations we have had today (there is no school today for President’s Day):

5:03 AM Caleb: “No snow today.”

Me: “Yes, Caleb, it will snow but we are safe in our home and I have fun things planned to do later.  Go back to bed.”

6:47 AM Caleb: “No snow today.”

Me: “Yes, Caleb, go back to bed.”

7:43 AM  Caleb: “No snow today.”

Me: “Go back to bed.”

8:17 AM Me: “What would you like for breakfast?”

Caleb: “No breakfast. No snow today.”

Me: “How about waffles?”

Caleb: “No snow today.  School tomorrow.”

Me: “I don’t know if you will have school tomorrow.  It depends on how much snow we

get.”

Caleb: “I don’t like snow.”

Me: “I know, honey, but there is nothing we can do about it.”

I will skip the rest of the morning, because these conversations were repeated about three times each hour.  At lunchtime, because the snow hadn’t started, I took him to his favorite restaurant.  We drove down his favorite road.  I told him we could spend the afternoon baking chocolate chip cookies and watching his favorite movies.

It didn’t matter.

As soon as he finished his lunch, it began again:

1:07 Caleb: “No snow today.  I don’t like snow.  I want school tomorrow.”

Me: “I know, honey, I wish you could have school tomorrow.”

Caleb: “I hate snow.”

Me: “I know you do, honey, I’m sorry.”

Caleb: “How many snow do we have?” (this means “how many days do I have to put up with this?”).

I work very hard to always be truthful with Caleb.  There is little in the world he can trust—he doesn’t know when the next health challenge will strike, he can’t understand so many things and he can’t really control anything in his own life.  So my answers to him are heavily weighted with truth.

Me: “Honey, I don’t know.  Maybe two days.  Maybe three.”

Caleb: “I want to hit snow.  Snow go home.”

I remember when my daughter was little and she would hurt herself, maybe fall and skin her knee or bang her shin on playground equipment.  We would rush together, and I would pick her up and smooth her hair, telling her it was okay.  She would look me in the eye, take a deep breath, and stop crying, then wriggle out of my arms to get back to playing.  I ache to be able to comfort Caleb in that way.  If I could, I would commission Spider-Man to shoot his webs all over the clouds and hold in all the snow.

Here’s the thing: I love snow days (and I know this is annoying to people who have had over eight feet of it so far this year).  They are so rare here.  Snow days, to me, are pajama days with hot cocoa, board games, and movies in front of the fireplace (not all at once of course).  I love the soft pelting of snow against the windows.  I love the complete change of the topography of my street.  I love the hush and peace and quiet.

But for now, peace and quiet are not to be.  Autism robs the families it strikes of peace and quiet.  It imprisons those who suffer with it, and by extension it imprisons the families.  I love my son with every cell, every single fiber of my being, but I hate the autism that creates anxiety and pain for him.  I hate the haunting distance it creates between those who love the affected and the affected themselves.

Sometimes I get a glimpse of who Caleb might have been without autism.  It’s a millisecond of clarity, of connection, of which Caleb is usually incapable.  I don’t love that boy any more than the one I am privileged to mother, but I wish I could talk to him, just for a minute, and ask him how I can comfort his doppleganger.  I want to ask him what he needs from me.  I want to learn how to calm him.  I want to ask him if he’s happy.  I want to learn more about the soul who lives within the impenetrable glass box of autism.

For now, I just try to gather the strength to answer the same question, in all its variations, multiple times a day.  For now I give him comfort in the only way I know how.  For now I try to make his life as peaceful as it can be.

I will do the same thing tomorrow.

Not All Publicity is Good Publicity

Kate Welch2 Comments

I haven’t named Caleb’s diagnosis specifically before because I’d like this forum to be a place where parents of kids with all different issues can assemble and know they are not alone.  ABC has forced me to go into more detail.

Caleb was diagnosed in 1996 at birth with DiGeorge Syndrome.  The syndrome was being studied by several physicians at the time, and the name has been in flux for years.  In the mid-1960s, Dr. Angelo DiGeorge of St. Christopher’s Hospital for Children in Philadelphia discovered the disorder characterized by a congenitally missing thymus (it’s a tiny organ of the immune system).  Dr. Robert Schprintzen of the Montefiore and Einstein Center in the Bronx, New York was studying in the craniofacial genetics program.  In 1978, Schprintzen wrote a paper about Velo (palate) Cardio (heart) Facial (facies) Syndrome.  In the 1980s and beyond, technology allowed for specific genetics testing to be performed to identify the chromosomal deletion which occurs near the middle of the 22nd chromosome at q11.2.

Recently, the trend has been to lump all of the different names of this syndrome into one: 22q deletion syndrome.  It occurs in approximately one out of 3,000 – 4,000 live births.  According to the Children’s Hospital of Philadephia, 90% of the time, the deletion is random, meaning doctors can’t identify a single cause.  10% of the time, testing shows the deletion is inherited and other family members are at risk for passing the deletion on to their children.  In Caleb’s case, both his father and I tested negative.  If Caleb were to have a child, his child would have a 50% chance of inheriting the deletion.

If you research this disorder by any of the given names above, you will find that there are 188 possible conditions associated with it.  You will find ranges for intelligence, mobility, cardiac health, learning differences, immunologic function and other possible challenges.  Almost all affected individuals have at least a few of the challenges, but to my knowledge no one individual has had all 188.  Though there are specific facial characteristics that can identify a 22q patient it is not as familiar, as, perhaps, the Down Syndrome facial characteristics are, so these individuals are not as readily identifiable outside the medical community.  Some of us parents have gotten pretty good at recognition too.  Further, I’ve met many families whose children have this syndrome, and not one was even remotely like any other child, in any capacity.  The range of sub diagnoses in this syndrome is incredibly broad.

Which brings me to the mention of “Grey’s Anatomy.”  I don’t watch the show, but I remember in 2013, the main character, Meredith Grey, said to her colleague:

“I am at 28 weeks and I am worried about DiGeorge Syndrome.”

“DiGeorge?  That’s like, what, one in 100,000?  It’s too rare.”

How could they confuse one is 3,000 – 4,000 with one in 100,000?  It boggles my mind and is giving me a headache.

On the February 5, 2015 episode, “Grey’s” went at it again.  Two doctors are discussing a patient:

Doctor 1: “Mother’s pregnant for the third time, and each baby was stillborn.”

Doctor 2:  “Well, this one will be too.  22q Deletion?  She should adopt.”

As I said, I’m not a fan of this show so I don’t know what preceded this absurd statement.  The mom in me wants to know what doctor ordered the FISH test in utero, because it is not routinely performed.  The mom in me also wants to know why the show has bothered to mention this diagnosis twice, without doing adequate research or seeming to understand anything about it or that the clinical name has changed in the past two years.

As a parent, I would like to see information about 22q furthered so that Caleb would be easier to explain to others.  But that information needs to be correct and factual.

Being the parent of a disabled child is hard.  By the time our kids reach their late teens, we are battle scarred and have learned to badger and push our way through challenges to get our children what they need.  The two episodes of this show which have mentioned my son’s diagnosis were kicks in the teeth—the kind that leave jagged bits of tooth anchored in your mouth and blood running down your throat.  Using your child’s diagnosis as a worst-case scenario will do that to a parent.  I’m sure that “Grey’s Anatomy” is an equal opportunity offender and has used other diagnoses as fodder as well.  We should form a support group.

I want to be naïve and ask if everyone can please play nicely in the sandbox and not make fun of anyone.  I know this show wants to be titillating and I know we can’t censor television so that nothing unkind is ever said about anywhere, anytime.  I get that.  Still, I want to ask all television shows, commercials, books, newspapers, web sites and every person everywhere to, quoting Ellen DeGeneres here: “Be kind to one another.”  Oh, yeah, and do your research.

“Grey’s” could have used the actual information to further the awareness of the condition, allowing the actors to sound educated and providing a very intriguing plot.  For example, they could have found via ultrasound that the fetus had Tetralogy of Fallot (one hallmark cardiac condition of 22q) and had pediatric cardiovascular surgeons standing by at its birth to perform life-saving surgery.  They could have discussed the miracle that FISH testing is (I don’t fully get it but it employs fluorescent light to show the deletion).  They could have discussed the implications of a missing thymus and how to function best in a world where you can get the measles going to Disneyland.  They could have, gasp, employed an actual young adult with 22q who was just accepted to college (there are many) to come to the set and give encouragement to the mom whose fetus was just diagnosed.  They could have brought in a genetics specialist to actually explain the deletion.

Alas, “Grey’s Anatomy” did none of these things.  They did, however, do a grave disservice to all of the individuals out there who live with 22q Deletion Syndrome on a daily basis.  To say any child is better off stillborn than born with this syndrome is repulsive.  Even worse, it was a throw-away statement, in a clip that lasted less than 10 seconds.  Shame on ABC and shame on this show.

I have been moved to happy tears today as I see the Dempster Family Foundation page flooded with pictures of happy, loved, adored kids with 22q Deletion.  We parents know the truth.

Autism, PTSD, Stress and More Stress

Kate Welch3 Comments

I just read an article on www.myfoxhouston.com which cited a study from the University of Wisconsin-Madison which stated that moms of kids with autism suffer from PTSD.  My friends and I have talked for years about the cumulative effects of caring for a severely affected child, and we all know how this level of caregiver stress can be absolutely debilitating.  I read another study years ago which documented that the telomeres (the tips of our chromosomes) are shortened when we care for a very sick child.  There aren’t a lot of places for us caregivers to go, but I hope this page can become one of them.

I asked my therapist about Post Traumatic Stress Disorder a few months ago and she told me that trauma has a very wide definition.  As a society we mostly link this disorder to soldiers returning from battle.  I’ve read of the difficult transition they must make from military to civilian life and I wonder what many of them would think of caregivers being lumped into the same category.  Michele Guppy, the subject of the Fox Houston article, stated: “We don’t leave our battlefield.”  And there’s the rub.

I showed this blog to my dad and he gave me a very interesting perspective: our stress is not necessarily post traumatic.  I am not a psychologist, psychiatrist, or social worker and I am simply offering my opinion here, not intending to diagnose, treat or otherwise provide any aid to anyone.  But my dad’s words made me look a little further.  Because we “can’t leave our battlefield,” perhaps a better term for this kind of stress is this (which I lifted word for word from Wikipedia.com:

Chronic stress is the response to emotional pressure suffered for a prolonged period over which an individual perceives he or she has no control. It involves an endocrine system response in which occurs a release of corticosteroids. While the immediate effects of stress hormones are beneficial in a particular situation, long-term exposure to stress creates a high level of these hormones that remains constant. This may lead to high blood pressure (and subsequently heart disease), damage to muscle tissue, inhibition of growth, suppression of the immune system,[1] and damage to mental health.

The response to emotional pressure suffered for a prolonged period seems to fit with most of my friends and me.  Within that, there are traumas, such as surgeries, injuries or new and baffling patterns of behavior.  The common denominator in all of this is that we feel we have no control over the situation.

From the time Caleb arrives home from school until he goes to bed, I am on a constant state of alert.  A few weeks ago I was in the back of the house when he decided he needed to check on a workman’s car that was parked on the street (this creates unbearable stress for him and he needs to check constantly until they leave).  I have an alarm on every door and window so I was notified the minute he opened the door.  The sound terrified him and kept him from going outside, so the alarm more than served its purpose.  But both Caleb and I were shaken for about an hour after the sirens ended.

One of Caleb’s favorite forms of entertainment is his iPad.  It’s loaded with educational software and games and the YouTube app.  Mostly, Caleb loves to watch all the rides at every Disney park, which people have recorded and posted.  Sometimes he will hear a song he likes and ask me to find the video—I watch it first then decide if he can see that version, or, in the instance of one FloRida song, the Teletubbies version.  We mostly have success finding a clean video, but there are some songs that he just can’t watch.

Yesterday afternoon, Caleb came to me asking me to find a song that had the word “you” in it.  He had heard it earlier in the day on a field trip.  Caleb’s speech is extremely delayed and disordered and I am usually the only one who understands him at all.  I couldn’t understand anything of what he was asking me except for “you.”  He tried singing it to me and I could not place the song at all.  I went on the iTunes top 100 song chart list and tried a few songs, but I never found the one he was looking for.  He grew increasingly frustrated and angry, and I don’t blame him one bit.  How awful must it be to know what you want, to hear it in your head, and not be able to either search for it yourself or give enough information for someone else to find it?  Caleb eventually grabbed the iPad and stomped away.  Deflated and nauseous, my day never got back on track either.  I had a few nightmares last night and even writing this is causing my heart to race.

All parents suffer stress.  We know this.  I don’t know the answer to the problem of the upper echelon of stress that parents of kids with special needs.  I have been on several antidepressants.  In my case, they didn’t help, I believe because this is a life situation, not a chemical imbalance, but I do know some people whom they have helped.  I have been in therapy off and on throughout Caleb’s life.  It does help on a cognitive level but I have yet to master my response to stress.  I have been blinded for 90 minutes three times by ophthalmic migraines.  I have had panic and anxiety attacks, one of which sent me to the hospital overnight.  I constantly struggle with sleep and when I do sleep, I often have nightmares.  My muscles are a mess and I am in physical therapy to make them functional again.  Clearly, I am not the person to ask for ideas on how to deal effectively with this stress, but I would love to hear what others do to combat this life-strangling stress.

I think the worst part of special needs parenting stress is we never know what might pop up or when.  Like the other day, I can be having a perfectly happy day until Caleb needs a song on his iPad and I can’t find it for him.  Within seconds, I am a puddled mess of emotions and fear that I am not doing my best for him. Recovery takes longer the older he grows.

The University of Wisconsin-Madison study is an excellent step in the right direction of finding help for those of us who are suffering, mostly in silence.  I pray that the study doesn’t end here.  I pray they reach out to parents and see what kind of help is needed.  Respite services, extra support in the home, or even just getting the word out that we need more compassion are a good start.  Day programs for young adults who age out of the school system would be an enormous help.  But even I don’t have all the answers, and I’ve been on this road a very long time.

What do you think would help this community?

The Perks of Having Special Needs

Kate WelchLeave a comment

I’ve touched on the many challenges of having a child with significant special needs, and they are many.  Some days, they weigh Caleb and me down more than the weighted blanket I lay on Caleb when he is having a particularly challenging day.  Some years, the challenges are 364 days.  I have found, however that challenges are interspersed with amazing gifts, like a daffodil growing in a field of choking weeds.

Caleb has been blessed by a phenomenal Make a Wish trip, many wonderful day camps, teachers who teach with the passion of the truly committed, and kindnesses that spring up unexpected, like the aforementioned daffodils.  Today in church, when the usher asked a young couple to scoot over a few seats so Caleb and I could sit on the end of the aisle (I never know what might set him off, so this is a necessary precaution for everyone), the couple moved, but looked quizzical.  After we slipped into our seats, I whispered to the husband that my son has autism and we need to be on the end in case something upset him.  This young man put his arm around me, and said, “No problem, we are so glad you are here.”  I would have wept at those words when Caleb was four and a bundle of crying, screaming, flapping nerves.  Today, I just let the warmth of those words wash over me.

On February 13, The Tim Tebow Foundation, supported by the Heisman Trust, is hosting “A Night to Shine:” a prom for kids over age 16 with special needs.  There is no cost to any of the guests.  He promises a red carpet, royal treatment, tons of volunteers and lots of dancing.  Typical of Mr. Tebow, I haven’t seen any mention in any media. It will be hosted simultaneously at 50 churches across the country.  I have long been an admirer of Mr. Tebow.  Caleb has an old University of Florida number 15 jersey that no longer fits but I can’t part with.  I have a Broncos number 15 shirt that I won’t ever donate.  People can say whatever they want to this non-football fan about his skills on the field, but off the field, there is no better player.  Tebow’s enormous faith, positive attitude and love of life shine on his face and he’s humble on top of that.  This event has dropped me to my knees.

Caleb has asked his favorite girlfriend to attend with him and she accepted.  Sophie and I took Caleb to a tuxedo rental place today.  For the first time in his life (he’s been a ring bearer and junior groomsmen before) he was allowed to choose his own accessories.  Caleb was ecstatic and chose a gorgeous sapphire blue vest with matching paisley tie and Sophie introduced him to some awesome striped socks in varying shades of blue.  When I went to pay, the clerk looked puzzled for a moment, then she said, “There is a $50 credit for anyone attending this function.”  Tim Tebow thinks of everything.

What is it that makes people who have no family members with special needs voluntarily enter our otherwise almost-apocalyptic world?  I don’t know.  I don’t know that without loving Caleb I would ever venture into this sometimes scary field.  I was approached decades ago about working with mentally retarded adults and I can’t tell you how fast and far I ran from that offer.  It terrified me.  That experience helps me remember when people aren’t kind to Caleb that they are not so different from me.  To quote “Frozen,” we were “born with” this situation, rather than “cursed.”  From the very first moment I held this precious child in my arms, I didn’t care what the situation was—I only wanted him to feel loved and accepted and cherished.  How unbelievably lovely that people who’ve never had the enormous pleasure of interacting with Caleb are moved to make him feel the same.

I loved watching Sophie spirit off to the two proms she attended.  It was almost a rite of passage, something we looked forward to for a very long time.  I never, ever even dreamed that Caleb would attend a prom, let alone one that promises to be absolutely amazing.  When the tab for the tuxedo came due, even with Mr. Tebow’s help, it was still a rather hefty sum.  Sophie asked if we could afford it, and I answered that with Caleb we are never guaranteed another year and we have to take joy where we can find it.  If you think about it, none of us are guaranteed tomorrow, but it’s more pressing with someone with as many health challenges as he faces.  I responded to her that this night will be a reprieve for Caleb, a time when he is accepted and celebrated by everyone and allowed to be a teenaged boy who gets to dance with his favorite girl.

It makes me wish that everyone who has felt marginalized, left out, or alone would get this opportunity.  Sometimes being labeled as having special needs allows Caleb to walk in a field of daffodils, if only for one night.  And most times, it is more than enough to carry us through the dark months to come.

Unmeasurable Progress

Kate Welch1 Comment

For all the new parents out there, you either are or will soon be overwhelmed with all of the developmental growth charts.  When did the baby first reach for something?  Follow you with his eyes as you walk across the room?  I think there’s one for cooing too.  Then, the big ones: first time rolling over, first crawl, first step…  You get the gist.

For us special parents, this process is radically different.  You may be at a playground or a doctor’s waiting room when you notice, without even trying to, that a baby of a similar age is doing three or four more things that your child can’t.  You look down at the baby you love so much that your heart is leaking all over your insides.  You don’t want that precious child to even know they have missed something.  So you switch him to the other hip, gently turn your back on the others, and suddenly find the wall or window or any other place to be fascinating.

Still, at every doctor visit, there is a list.  When Caleb was very young, some of the doctors tried to treat him like every other patient.  They would get out their list with a big smile and say, “Okay, what are we doing now?”  After several shakes of my head (even then, I didn’t want to verbalize and answer, which could make Caleb feel bad about something over which he had no control), they would stand up and cheerfully say, “Well, maybe by the next visit.”

Fortunately for Caleb, we attended a clinic at the Children’s Hospital of Philadelphia when he was around six months old.  After seeing what felt like 40 specialists over two days, those doctors were able to get the ball rolling with Early Intervention, a term that is both wonderfully hopeful and sadly draining to most of us.  At one point we had 9 therapists in the house every week, doggedly working on speech, movement, attention, eye contact.  I was still desperately clinging to the thought that all of this intense help would help Caleb propel into preschool with all of the other neighborhood kids.  Until one day his physical therapist said to me, “How many other people on this street have PTs working in the home with their toddler?”  Harsh words, but harsh words became benchmarks for me.  Like a punch to the gut, if you can tighten your abs ahead of the blow, it is much easier to take.

Caleb has now been in school, in special, self-contained classes for over 16 years.  I can’t calculate how many IEPs we’ve attended.  I can remember the name of every teacher, especially the ones who are as entranced by this young man as I am.  I have become close friends with several of them.  When Caleb was in first grade, the wonderful, energetic and completely accepting young woman who taught him would come to our home and help us work out some behavior problems.  He melted into her one afternoon, and I could see the gratitude on his face that she understood him, and had helped me to as well.  Another teacher whom I now regard as an angel on earth became certified to work in the home with Caleb after an accident left him homebound for three months.  She worked so diligently with him and told me that she wished she could always work this way with him—he made so much progress.

Which brings me to the point of this particular entry:  Caleb’s milestones, missed and achieved, have been analyzed and catalogued ad nauseam for his entire life.  In several evaluations, he has been reduced to numbers or conditions or medical diagnoses.  I have been told by several specialists that he has plateaued, that where he is is where he will remain.  That is what their tools tell them.

But Caleb has his own tool box.  Along with the wonderfully affirming people in his life, he is able to pick out a tool and use it to access areas in his brain that I used to see as closed-off construction zones.  I have no measurement available to evaluate this dynamic, so I am calling it “Unmeasurable Progress.”

I’ve mentioned Caleb’s therapist before—this man has found a way to ask a question and receive a clear attempt at an answer from Caleb.  We can walk into his office with Caleb slightly slumped over, a frown tugging at the corners of his mouth, and when we leave 30 minutes later, Caleb is back to bouncing on his heels, and doing what the family calls his happy dance (waving his arms and leaning forward in a way that is just pure joy).  This therapist makes Caleb feel heard and even if I don’t fully understand the exchange, I rejoice in the metamorphosis.  This very kind man also told me that he thinks everyone underestimates Caleb.  He says Caleb could not have his very infectious and clever sense of humor if there weren’t intelligence to back it up.  I can’t measure that statement in codes, but it made me feel about three feet taller.

For the past two years, Caleb has attended a school with a very dedicated teaching team of three women and he absolutely adores all of them.  At some point in the first year, he began asking me to email his teacher in the morning before he left for school.  Caleb loves to quote TV shows or movies and he uses those quotes as communication.  His language is delayed and disordered so if he can mimic what someone else said, sometimes it makes sense and he can have a real conversation and know, like with his therapist, that he has been understood.  So every morning, after shower and medications, while waiting for the bus, he will ask me to email his main teacher, who has a laugh that warms my heart while I’m just sitting here thinking about it.  One day this week, he wanted me to tell her that he and I were watching the “Friends” episode where Joey, Chandler and Ross go to a hockey game and Ross gets hit in the face with the puck.  Caleb was laughing so hard that we had to rewind the scene a few times.  Without context, maybe his teacher would not have been able to place “Ross gets hit with hockey,” but with the email, Caleb and she were able to laugh about it as soon as he got to school.  This teacher, another angel on earth, has repeatedly told me she loves the emails because she knows they help foster this communication.  By reading the email first, she can catch what he is saying when he arrives in class.  I don’t think this technique even has a name, but it has created huge leaps in Caleb’s language skills.

After Caleb goes to sleep, I check on him at least once before I go to bed.  He’s almost always asleep but remembers this and almost always thanks me in the morning.  A few nights ago, he was wide awake so he asked me to sit with him for a few minutes.  For some reason he started remembering a “Berenstain Bears” episode where Papa got the hiccups.  In real life, if my daughter or I get hiccups, I can almost hear air raid sirens because Caleb becomes extremely, profoundly upset at hiccups.  So when he stated the line from the TV show, he ended with Papa having a hiccup.  The next time he said the line, I jumped in with a (blessedly) fake hiccup and Caleb emitted a laugh that began deep in his belly, and worked its way up, until he almost had happy tears in his eyes.  When he stopped, he said, “Again,” then repeated the line from the show and I jumped in with the hiccups.  This went on for 9 minutes.  I don’t keep records like this, but I do believe that is the first time in 18 years we have had a back-and-forth conversation for that amount of time.  We were both tired when it was over so I kissed him on the head and told him I would see him in the morning.  He talked frequently about the experience for a few days, and still asks me to jump in with a hiccup now and then.

These Caleb milestones wouldn’t fit on a chart and could not be graphed or diluted into numbers.  What tools can show a leap in conversation skills and the demystification of something that used to frighten him?  Still, these steps propel me forward with hope, because this child has not stalled.  He’s still growing.  I asked one doctor years ago, if typical adults still can grow and change, why can’t he?  The doctor said it would be different for Caleb, but I am ecstatic to shout that he was wrong.  Watch your kids.  Try to remember where they were a few months or a year ago.  Even if it’s something little, there might be progress.  You probably won’t be able to show it off at the playground or doctor’s office, but you can tuck it into your heart and it will help melt away the sadness that might be left over from missed milestones from someone else’s agenda.