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Sick Daze

Kate Welch1 Comment

Caleb got very sick this weekend and quickly reminded me of two things: 1) the only time he will cuddle with me is when he’s sick and 2) the minute he’s sick I scramble all of my medical knowledge and treatments with the dizzying speed of the Avengers assembling.

I’ve written before that for the first two years of his life, Caleb was sick for at least two weeks of every month. I mean 105-degree-fevers-that-sapped-all-of-his-energy sicknesses. The hallmark of 22Q Deletion Syndrome is a missing thymus, which is 1/3 of a healthy immune system.

Without the thymus, Caleb is extremely vulnerable to viruses, but any illness can typically attach and hang on for much longer than it would in a healthy person. Because he can’t communicate well, I have to pay close attention to whatever symptoms are obvious and try to treat them.

Every illness takes me back to those two years and I find myself bracing for the worst news. I never want Caleb to feel anything but protected and safe, while I crumble inside fearing what is next.

Caleb’s language is extremely delayed and disordered—most people can understand a word or two that he says, but he also speaks like someone who is native in another language. He leaves out articles, only knows male pronouns, and usually only knows one tense of a verb.  With me, because we are together all the time, I can understand almost everything he says.

It sucks when any kid is sick. Every parent feels that helplessness and that unfulfilled wish to take their kid’s place when they are in pain. But with Caleb, each illness could potentially put him in the hospital. Each illness stirs up fear and dread, and I know from its onset that I won’t sleep until he’s better.

This language barrier makes it extraordinarily difficult to treat Caleb when he is sick. Even though he is 6’2” a doctor has to treat him like he is a toddler, who can’t say exactly where they hurt or what is wrong. Caleb is the antithesis of Dr. Theodore Woodward’s precept of:  “When you hear hoofbeats, think of horses not zebras.” Dr. Woodward wanted to teach his medical interns that a simple diagnosis is more likely than a rare one. This is not the case with my sweet Caleb. He is always, always a zebra. What may present as an ear infection in a neurotypical kid will likely be a urinary tract infection in Caleb.

The way Caleb’s medical history has worked out is that he gets a pediatrician, it takes them a year or two to understand the zebra approach, and then, for various reasons, we have moved. He has seen his current pediatrician, whom we both adore, for almost two years now, but she informed me on a recent visit that he will age out of her practice next month. I understand—there are one day-old babies, toddlers and elementary school kids, and then my gentle giant and I walk in. I’m hoping to get one more visit with her tomorrow because she totally and completely understands how to approach any illness with which Caleb presents.

Last night, Caleb developed a cough in the late afternoon and asked to go to bed a half hour early. This morning, he woke after sleeping 15 hours with glazed eyes and a voice which my daughter lovingly likened to the late Joan Rivers. At that point, his fever was 98.9 (his normal is 97.5), so I gave him breakfast, lots of water and tucked him back into bed. He slept a few more hours then came down to eat lunch and have more fluids pushed at him. A little while later, on my millionth hand-on-the-forehead of the day, he was burning up with a temperature of 101.6.

Because he can’t regulate his body temperature on a good day, this climbing fever is bad news. I am fully anticipating a 2:00 AM wakeup call where his fever is over 103. The immune system shuts down a bit during the night and this scenario is all but guaranteed.

My arsenal of treatments for Caleb is extensive. Whenever he enters our home from anywhere, he washes his hands. I sterilize door handles, faucet handles, remotes and light switches once a week. I have backups to already-full containers of acetaminophen, ibuprofen and Benadryl. I have unopened containers of cough medicine. There have been times where I couldn’t get him to a doctor or urgent care office, so I have to be prepared to nurse him through a day or two without formal treatment.

Today I had an epiphany that makes me want to slap my forehead like those poor people in the V8 commercials. Caleb can’t swallow medications so for 8 years I have run to the computer for every fever, trying to calculate the correct dosage by weight of children’s liquid pain relievers. These are gloppy, heavy liquids and sometimes Caleb would need 6 teaspoons or more of one, then 6 or more of another (ibuprofen and acetaminophen don’t work on their own against Caleb’s inability to regulate his body temperature, so I have to alternate doses every two hours).

Today, voila, I finally figured out I could crush the adult pills, like I do with his other meds, and put them in a shot glass of chocolate milk. He was incredibly relieved to take meds this way and I sat there scratching my head and wondering what took me so long to come up with this one.

About 98% of the time, when we do go to the doctor, Caleb has a viral infection. He receives regular flu and pneumococcal vaccines, and he received one for meningitis. Without these vaccines, Caleb’s weak immune system would be far too vulnerable. With them, he still gets sick, but it seems to be a less life-threatening illness for him. I expect when we see the doctor tomorrow she will tell me it’s viral, but on the microscopic chance that it’s bacterial, we have to act early and get ahead of it so that it doesn’t become too strong for Caleb to fight. A few years ago, Caleb contracted a virus that lasted 21 days. I never want for him to have to go through something like that again.

Caleb’s been sleeping beside me as I write this and I marvel at how well he listens to his own body. How many of us, when we’re sick, tough it out or act like we are so strong we don’t need to rest? He is so much wiser than me and I’m sure if I had posed the problem of liquid medication dosages to him, he would have figured it out 8 years ago.

For now, I am praying that all he is doing to take care of himself works and that he is back to his happy, joking self very soon. The house feels way too quiet without his laughter.

I Want to Outlive My Child (and 3 Other Horrible Truths About Being a Special Needs Parent)

Kate WelchLeave a comment

We all know the brave, strong, inspiring images of parents of kids with significant special needs who wear their challenges like a suit of armor. I have been that parent sometimes. I have also been the parent who is crying so hard that I can’t speak because I don’t know what to do. There are also several dark truths that we all feel, but mostly don’t discuss.

I want to outlive my child.

We live in fear of what will happen to our son or daughter when we die. Where will they live? Will anyone care for them like we have? I know there are excellent group homes out there and I know that I can’t afford any of them. I know there are compassionate, wonderful people who work in state-funded homes but I don’t know how to find them. These are thoughts that steal sleep or wake me in the middle of the night.

Most of us dread summer.

The majority of special needs kids need routine like the rest of us need air. School provides the structure these kids need and the break or daycare the parents need. It is an awful misrepresentation to call school daycare, but it’s a harsh reality most of us face because after middle school, it is exceedingly difficult to find a daycare that will accept our child. Some states have excellent summer school programs. In most, however, there is so little funding for special needs summer school that the slots go to those who are close friends with Harry Potter.

I am fortunate to be able to stay home full-time with my son, Caleb, but it makes summer drag out like endless loops of fishing wire. The first month of summer we usually search for routine with  lots of swimming (which results in several ear infections), lots of visits to the library, maybe a movie or two and my feeble attempts to emulate the educational models Caleb’s teacher flawlessly presents every day. At some point in those four weeks, Caleb begs out of these activities. He wants to be at school with his teachers and his friends. Their routine trumps anything I could even attempt.

By the time school resumes, I am weakened and depressed from the toll of long summer days. Caleb’s health issues make summer even more challenging because he can’t regulate his body temperature and will die if he gets too hot. Summer camps are usually not an option for him because of his specific temperature needs. Aside from swimming, we are restricted indoors and that takes a toll on both of us.

Worse than summer, we dread the day our child turns 21.

Federal law requires that students with disabilities can attend public school until the year in which they turn 21. It is amazing that education is extended for these students, but it ends there. After age 21, parents are left scrambling to find programs for their young adults. I have visited several day programs that mimic school for young adults. Some are really structured and provide wonderful outlets for young adults with special needs. These are usually the ones that cost the most, excluding many of the people who need these programs. Some of these programs provide services for a few hours a day, not a full day, which leaves parents who work with untenable choices.

Because our kids are mentally much younger than age 21, many of us are reluctant to start the search for a group home until we are physically unable to care for our child. At a time when our friends are either enjoying or dreading an empty nest, we are left with no choices.

We often have to take away our child’s rights to make their own decisions.

When our special needs child reaches age 18, many of us have to file for guardianship. This is a complicated process which involves attorneys (and their fees), court appearances and letters from doctors. The premise is that because the child is chronologically an adult, they have the right to refuse medical treatment, including things like an ambulance ride, necessary medications or surgeries. An ambulance could show up at the front door and if the young adult doesn’t want to get on it, the ambulance drivers have to respect their wishes, unless guardianship is in place and the parent can demand that the young adult be treated.

Guardianship may be necessary, but it is one of the hardest things I have ever had to do for Caleb. It boils down to petitioning the court to acknowledge that he is an incapacitated person. It is effectively taking away his right to make his own decision, and that is a very sad process. I walked out of court the day guardianship was final with my head down and my heart heavy.

I believe these are universal unspoken truths for special needs parents. They weigh us down even when we’re not thinking of them. So if you see one of us on a good day and we still seem a bit down, it’s because the future looms like a black cloud that fills the whole sky. We all want the best for our kids and many of us fear we may not be able to provide it.

These are ugly, frightening thoughts. I spent the majority of Caleb’s childhood trying to avoid them and the guilt they impose. As time does, it has brought these issues to the surface, which requires action. I am leaning heavily on my friends with older kids, listening to what they have learned and watching what they do. I hope by the time Caleb is 21 that I will be able to help the parents coming along behind us.

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?