With Gratitude to Rosemary Kennedy From The Mom of a Child With Special Needs

This week’s People magazine featured Rosemary Kennedy on the cover as well as a detailed story of her life. The article was based on the books Rosemary: The Hidden Kennedy Daughter by Kate Clifford Larson and The Missing Kennedy by Elizabeth Koehler-Pentacoff. One huge revelation regarded her 1918 birth, stating that the delivery nurse, trying to stall delivery, held Rosemary’s head and forced it back into her mother’s birth canal. For two hours. The article makes reference to Rosemary’s later intellectual disabilities and her family’s embarrassment at the time, ultimately leading to a fully disabling lobotomy. I don’t judge or blame the Kennedys—judgement is a cruel trick used to manipulate the past.

The article reminded me of one of my favorite books, Kim Edwards’ The Memory Keeper’s Daughter. It takes place in 1964. The mother’s husband and his nurse assist during a home birth to twins. The first child is a healthy boy; the second is a baby girl with Down Syndrome. The father’s sister died at age 12 after a life in an institution, so to spare his wife, he asks the nurse to put the baby girl in an institution and to tell his wife that the other baby died. The nurse was smitten by the precious baby girl and instead moved away and secretly raised her.

After I finished reading the Rosemary Kennedy article, I said a prayer of gratitude. Life with a disabled child is measurably more difficult, but as I’ve said before, if Caleb had to be born with so many challenges, I’m delighted that I’m his mama. I’m so grateful that today we aren’t pressured to put our children in an institution, as this used to be the heavy-handed instruction posed as a question to parents in hospitals.

What speared my heart about Rosemary Kennedy was reading about her intellectual disability. She was slower than her siblings and her IQ was below what is considered to be normal intelligence, but, for a time, she tried to keep up with them. She was able to do math problems, write and keep a diary. In 1941 at age 23, a lobotomy was performed when Rosemary displayed aggression and mood swings. It left her mentally and physically incapacitated. She became a prisoner in her own body and mind. Today, with proper treatment, medication and therapies, Rosemary may have been able to lead a full, independent life.

I write often of the pain, isolation and stress of raising a child with significant special needs. I will never sugarcoat it or succumb to the often-misquoted platitude of “God never gives you more than you can handle.” God has given me inordinate strength so many times in Caleb’s life and without it I don’t know how I could walk this walk. I am profoundly grateful that even though Caleb is often stared at in public, we don’t also have to suffer the societal taboo and shame that the Kennedy family and others like them faced.

At the same time, so much of this life, and my friend’s lives, are more than we can handle. I understand why Rosemary was institutionalized. I understand how her parents made that decision. I am gratefully awed that by the time Caleb was born in 1996 I was able to take him home with me with no questions asked or even insinuated.

From the time he was a toddler, Caleb has received specialized therapies that have brought him to his highest functioning level, which is still below that of Rosemary Kennedy’s. It’s almost as if entire professions have popped up since babies with special needs have been sent to live at home. By extension, there are so many learning centers and accommodations for children with learning disabilities who can function in typical education classes. So many affected people have gone on to live much fuller lives.

Even with all of these supports, there are still children who are sent to live in group homes at a very young age. I recently came in contact with a woman who was working at a special needs camp. In her group was a 19 year-old man with 22Q Deletion Syndrome, just like Caleb. His family was no longer able to care for him so he was living in a group home. I know this happens. I know there are good places. I know there are viable reasons why families can no longer care for their children. My heart aches for all of them.

For now, and for as long as I am able, I am profoundly grateful that Caleb lives with me and attends a self-contained special education class with wonderful teachers at a great public high school. He loves going to school. He loves riding the bus. His room is decorated with classic car signs, Disney posters and awesome bed linens with trains on them. He loves the freedom and serenity that comes from having his own special place. He is truly the happiest person I know.

For decades, the media has focused on the Kennedy family’s shame about Rosemary. It was alluded to in the article and in so many articles and television shows about her life. I would like to help refocus Rosemary’s story into an impactful one that helped so many future babies, children and adults. I believe her story created great empathy and caused so many people to reflect on and question how the disabled are treated. She certainly inspired her sister Eunice, who wrote an article about her for The Saturday Evening Post. Eunice welcomed Rosemary to her home for visits. She went on to found the Special Olympics, which has brought incalculable joy to millions, both athletes and the families and friends who cheer for them.

I wish Rosemary could be here to see all the good that came from the tragic horror of her life. I like to think that she can.

The Not Quite Empty Nest When You Have a Young Adult With Special Needs

I haven’t posted in a while because, as I’ve written before, summer sucks about everything out of me. Caleb has had a great summer and is excited for school to start. So am I.

This week lots of my friends are posting about their oldest kid leaving for college. It’s a challenge for all parents. The little person you’ve known from birth is now flying off on their own, just as they should be, just as you raised them to do. It’s a phenomenal achievement for both kids and parents, but for parents it leaves a hole in the house. I often say about Sophie that when she leaves, she takes all the air and sunshine with her.

Sophie is a junior now and I should be used to her leaving, but when she left this week with her car heavy with almost everything she owns, I collapsed into a mess of tears. Sophie is smart, incisive, a great helper and one of the funniest people I’ve ever known. I miss everything about her.

Here’s where the not quite empty nest kicks in. For most of us parents with special needs kiddos, our kids will never leave the nest. I’ve talked with many older families over the years and in most of those cases, their special needs adult lives at home until a grave illness or death strikes one or more of the parents.

My goal is to let Caleb live with me for as long as he can. All the things I do to give him a happy life take a great toll on me, but I fully believe he deserves a happy life because he has been through so much. Life is incredibly challenging for him and it’s my duty to make his home life amazing. Plus, he’s a great and funny kid too.

Years ago, when Sophie and I first started talking about college, I realized that her leaving would hit me like an icy wind, reminding me that all is not normal in our family. As difficult as it is to say goodbye to your precious 18 year-old, when you have a dependent kid, it is a painful reminder that one will leave, but the other one never will.

It took me until Caleb was about four years old to fully understand just how challenging the world is for him. At any given time, he has at least 10 specialists who work to keep him healthy. Every visit with these wonderful providers serves to remind me that Caleb is not healthy. It took many more years to realize that Caleb would live with me forever.

As a parent, you work with your neurotypical child, helping to learn their letters, to complete mud replicas of Aztec villages, to practice whatever language they have chosen to study. You help them learn to swim and shuttle them all over the place for sports or music or debate clubs. All of these things, you hope, will prepare them for college. That’s the goal. It’s a natural expectation that your child will one day leave home and use all those skills to become a successful adult.

When your child has special needs, it’s a major upset to that expectation. Aside from missing Sophie, her leaving is also a stark reminder that the natural order has been disrupted. There are upsides to an empty nest, but we won’t experience them.

So, my fellow parents with a not quite empty nest, here’s what we need to do. First of all, it is vitally important that we grieve the loss of a normal transition to adulthood for our kids. You may not even realize that in the way-back of your mind you were still hoping your child might be able to be independent. For many people reading this, that is a reachable goal and I’m so, so happy for you. But for all the parents of amazing kids like Caleb, you have to acknowledge the grief so you can work through it.

I didn’t cry for so many years because I knew if I started, I wouldn’t be able to stop. We need to cry. That grief needs to come out or it will become toxic. As Sophie will tell you, now I cry at almost anything. Songs on the car radio. Commercials. Amazing performances on So You Think You Can Dance. I will tell you that being a crier is so much healthier than holding it all in.

The second thing we need to do is seek out day programs for our kids to attend when high school ends. Caleb has three more years and I’ve already started investigating. If I had the energy, I would write congress and lobby for them to provide extended schooling for our kids, which would be much cheaper than government-funded group homes. My energy stores are bankrupt right now, so I won’t be doing that.

The third thing we need to do is find something that we love to do. This one is really challenging for me because, at least during summer, we are stuck in the house all day because of the heat. So when Caleb wants time to himself, I read, watch tons of HGTV, play Fleetwood Mac on Pandora while I’m cooking. I burn candles after dinner because they just make me happy.

I’ve also found adult coloring books with stress-relieving patterns (there are lots to choose from on Amazon). Caleb and I color together while I play Lindsey Stirling on Pandora. It’s the ultimate in parallel play for him and it’s a great bonding activity for us.

We need to nourish our souls with joyful things so they don’t atrophy. Caregiving is enormously stressful and we need to replenish ourselves. If this sounds selfish to you, then consider it as strengthening your entire self so you are better able to take care of your child with special needs.

I know this will cause lots of eye-rolling but we need to eat healthy and exercise to keep ourselves healthy so we can live long and take care of our kids. I know this isn’t always realistic—so often, I feed Caleb his breakfast, give him his meds for the day and then have to rush out the door with only coffee for me. Just do your best. It’s better than not trying.

We also need to reach out. I don’t accept help easily, like so many parents. When I reach out, it’s to God in prayer. I find saying the Rosary enormously comforting. Sometimes all I can do is chant, “Help me. Help me.” I was doing this yesterday while driving with Caleb. I was in tears and trying to hide them because they upset him. We came upon an empty playground, got out and played for a few minutes. When we left, I was laughing. I got the help I prayed for.

I am not a model of all that I advise. I fall short all the time. I collapse a lot. I am extremely fortunate to have a large network of other moms of kids with special needs. We talk on the phone. A lot.

I wish every parent with a not-quite empty nest the best of luck in this painful transition. I wish that even if you can’t follow all of the advice above, that you try at least one. I wish we could have a worldwide virtual coffee date. I am open to other suggestions of how to cope with this stressful time. We need to lean on each other and learn from each other. That’s why my blog is called Neverland Without a GPS—we are in unchartered territory with no clue how to navigate it. But we’re here together.

helping hands

The Unmitigated Glory of a Reprieve When Your Kid has Special Needs

This morning, when I stepped outside to water the flowers, I noticed a magnificent breeze that reminds the California girl in me of the Santa Ana winds. We reside nowhere near California and where we live, temperatures have been consistently over 95 degrees for most of the summer. The air is so humid it almost feels you are drinking water if you take a deep breath. Because Caleb can actually die if he becomes too hot, the oppressive heat has kept us inside for over six weeks.

The breeze this morning invigorated me. I felt like Sandra Bullock in Practical Magic, when Nicole Kidman wakes her in the middle of the night to tell her that their aunts are making margaritas. The sisters kick their feet, giggle, and scream happy squeals as they totter down the staircase to find their already-tipsy aunts happily handing off two fresh margaritas.

There were no margaritas for me this morning, but as soon as I felt the wonderful outside air, I kicked my feet, giggled and yelled up to Caleb, “Hey! Do you want to go to the swings?”

Caleb answered more quickly than usual with a resounding “yes” so I got him dressed, gave him a water bottle for the three-minute walk and out we went. Today there is lots of cloud cover, which provided a shelter from the sun. That marvelous breeze was still swirling around. I met an awesome new neighbor and Caleb was able to enthusiastically swing for almost five minutes before his hands turned red. We had to immediately get into the car so I could blast maximum air conditioning on him to get his hands to return to their normal color.

This ten-minute reprieve was a delightful gift. It filled Caleb and me with such joy that it will likely carry us through the rest of the day. Reprieves are like precious gems that we are given to hold onto for only a moment, for they will soon turn to dust and life will go back to whatever it was before.

That’s the thing about reprieves: you never know when they are coming. You also never know when they will end with their crisp finality. Reprieves are an excellent reminder that we need to live in the moment, not worrying about the future or regretting the past. While in a reprieve, we need to soak up the solace, joy and giddy invigoration.

Among my friends who have kids with special needs, one of our biggest pet peeves is when people say, “God never gives you more than you can handle” or “God only gave you this child because you’re such a great person.” When people say this it feels like a platitude, like, “I’m so glad God doesn’t think that I could handle your life, because it looks like it sucks” or “Good thing I’m not a good person, because, wow, how can you live like this?”

This exact saying is nowhere in the Bible.  I have searched and searched for it. God says he will equip us for the battle and that he won’t tempt us beyond what we can bear. He promises we will never be alone.

I believe that reprieves, though they occur rarely, are one of God’s many gifts to us. They are equipment for battle and a calm in the storm of our daily lives. They are a reminder of how much he loves us and an acknowledgement that he fully understands how physically, spiritually and emotionally draining our lives are. Reprieves allow us to catch our breath, straighten our shoulders and move on with a smile to the next challenge, because there will always, always be one.

I was enjoying a reprieve on the morning of August 4, 2006, the second day of Caleb’s fifth grade year. I was waiting in my hairdresser’s chair for my first haircut since April. I was just beginning to unkink from the long summer and really looking forward to having my hair cut. My stylist was late that day. Five minutes after I had been relaxing in the salon chair, my cell rang loudly, with the screen announcing it was Caleb’s school. All they would say was that he had hurt his leg and I needed to come immediately.

When I arrived, there were two fire trucks and three ambulances lined up at the front office. Caleb had broken his leg and it would be almost six months before he could go back to school.

A few years later, Caleb was at a summer camp that we just loved. Sophie and I took the opportunity to see The Amazing Spider Man. We made it almost halfway through the movie. We loved it and were so grateful for the time that we could just be just a normal mother and daughter. We didn’t have to do the million things we have to do everywhere we go to keep Caleb safe and calm and shielded from people who often stare too long and whisper too loudly.

My phone lit up so I stepped outside to answer it. A well-meaning young woman at the camp felt bad that Caleb was inside so she took him outside to be with the other campers. He immediately overheated, zoomed past the initial warning sign of red hands, and they panicked. They stayed outside and tried to force water down his throat, which caused him to have a seizure. I told Sophie we had to leave, and, ever the best big sister, she said, “Let’s go.”

Reprieves can take many forms and they can be one minute long or sometimes last a week. Any break from doctor visits, surgeries, endless therapies and even uncooperative weather can calm our souls and allow us to regain our strength. A reprieve can be a kind smile from a stranger at the grocery store or a waitress who patiently and sweetly answers Caleb’s questions about her car and her birthday.

If no reprieves show up when we need them, sometimes we can create our own. Excellent books make for wonderful escapes. Kristin Hannah’s The Nightingale had me believing I was living in World War II in France for an educational and hopeful week this spring.

The ability to record, pause and stream TV is my favorite invention ever. When you are homebound most of the time, Netflix and a DVR can be your best friends.

My daughter and I are binge-watching Parks and Rec. If you know the show, read this next sentence as Rob Lowe: “There is literally nothing in Parks and Rec that could frighten or confuse Caleb if he entered the room when someone is watching it.” Along with anything on HGTV, these are really the only two things we can watch during the day, unless you count all the Disney movies that we have seen over 800 times each.

I’m trying to envision what a reprieve could look like if it were visible. A film of one would show a wilted flower, turning brown at the edges and bending toward the earth. The first few drops of rain wake the flower and within minutes, it is standing tall and proudly blooming again.

Because none of us know what the next minute might bring, and dwelling on mistakes from the past only drags you back there, try to breathe in the beauty of whatever reprieve presents itself to you. It’s not a coincidence, it’s a gift from God who knows exactly what you need.

Summertime Sadness

Today I just need to rant. But first, many thanks to the ethereal Lana Del Ray for giving me today’s title.

I’ve written before about the cumulative effects of taking care of a person with special needs. If we count in the time I cared for Sophie as a baby, I have been wiping bottoms, brushing teeth and reading bed time stories for 20 years.  I’m tired.

Summer is absolutely awful for us. Aside from the lack of school structure, Caleb will die if he overheats. Because he can’t regulate his body temperature properly, his body goes into overdrive when it’s hot out and this process exhausts him. This summer has been hotter than normal and it means we are stuck inside. Errands like grocery shopping  or even a haircut wipe Caleb out.

With the extreme heat, we need to keep our house at 67 degrees (I can’t even begin to think about this month’s electric bill—I see lots of Kraft mac and cheese in our future). I arrived at this number after a few weeks of experimenting with other temperatures. Anything higher makes the indoor temperature too warm for Caleb. This number can only hold if every blind and curtain is drawn. It’s so dark and dreary it feels like we are living in the Addams Family’s house.

In Philippians 4:11, the Apostle Paul wrote about learning to be content in all situations.  He wrote this as an innocent man in prison, so I’m thinking if he can do that, so can I. I am making a conscious effort to be content, but it is really, really hard. This morning, as I was driving Caleb to the pool, I was actively thanking God for all of the blessings in my life. The fog of summertime sadness (AKA seasonal affective disorder, just not the usual kind) was just beginning to lift.

Let me back up a second here. Crowds in a pool are generally not good for Caleb and me. When he was young, a child who just didn’t know any better asked Caleb if he was Frankenstein because of his large open-heart surgery scar.  One time, teenage boys starting throwing a ball at Caleb’s head. Caleb’s unusually high voice and autism mannerisms like hand flapping cause many curious glances.

I’ve heard people who think I can’t hear them asking what is wrong with him. All of these situations are painful so we go to the community pool at 8:30 AM before it officially opens at 10:00 so we can have it to ourselves (don’t worry, Caleb swims well, he’s taller than the deepest part of the pool, there are two phones at the pool,  and I was a lifeguard in my younger years).

Okay, so we get to the pool today. I was getting in some exercise and Caleb was happily floating in the shady part of the deep end. He instinctively knows the sun hurts him so he always seeks out shade.  We have been staying for about an hour each trip and Caleb leaves the pool so happy that it carries him through the rest of the day.

Then it happened. A woman showed up with four young girls (I’m guessing they were around age 8). They looked our way, which was fine. Except Caleb yelled out in his distinctive voice, “Hi!” Caleb is the most social person I’ve ever met on the autism spectrum. I gave a small wave. But not one of these five people said hi or waved back. I’m probably reading too much into it, but 18 years of experience makes me think that they heard his odd voice, knew he was different and, like so many people, act like Caleb’s challenges are contagious so they avoid him completely.

I don’t know what made me think this, but I somehow knew that the woman was going to use the exercise room that is adjacent to the pool. It’s behind glass walls. And I knew she was going to let those girls swim while she was so far away. I both envy and resent people who let their kids swim unattended or climb rock walls or play on playgrounds. None of those are options for us because Caleb needs constant, unwavering watching. The few times I have ever taken my eyes off of Caleb for one literal minute, he has broken his wrist, fallen and broken the braces off of his teeth or fallen on concrete and landed on his forehead. However, as a former lifeguard, I can’t turn off my instinct to watch everyone in a pool.

The woman said to the group of young girls, “You stay in the shallow end so I can see you.” I’m fairly certain she wasn’t implying that I should watch them, but it did seem irresponsible to me that she would leave them basically unattended in a pool. It’s happened before, at therapy sessions or other pool times where people just assume any other adult will keep an eye on their kid. I can’t take my eyes off Caleb so this wasn’t going to happen. Further, without an adult monitoring the kids, the kids were more likely to say something to Caleb or start laughing and pointing.

So we left.

Life at home is very difficult in the summer. I was on the phone with one of my best friends yesterday and Caleb came down four times asking if he could have the car brochure that he was holding for his birthday. This happens an average of about 123 times a day. It’s maddening, but I need to say, in my calmest voice, that he already owns the thing he is holding in his hand.

Another question he asks multiple times during the day is if his regular rubber ducks would be sad if he got a new rubber duck. I have to tell him, repeatedly, that yes, they would be upset. If I absentmindedly say we can get a new one, he lets me know this was the wrong answer and the whole process starts over. Failure to give the correct answer spikes the poor kid’s anxiety so the questions are quadrupled.

I adore my son. I’ve always said that if he had to be born with so many challenges that I am beyond grateful that I get to be his mom. I do my best to keep his life happy and calm and as predictable as possible because that lessens the anxiety that rules his world.

I was really trying to be content today. The one positive thing we had going for us today was that time in the pool, and it was cut in half. Now we’re back in our oddly dark home and I’m on deck for endless questioning.

So here’s my question for everyone reading this: what do you do to find contentment when it’s as difficult as trying to finish a dream that you woke up in the middle of?

Overcoming the Crush of Paperwork When Your Kid has Special Needs

I just had to fill out some paperwork on Caleb and it literally sent me back to bed. At 10:30 AM.

The paperwork was simple enough—it’s an intake form for a summer speech and occupational therapy clinic. In total, it was six pages of questions about Caleb’s functioning at home. I know it will be valuable information to the therapists, and I am so grateful that they are so interested in helping Caleb gain independence and function. I am so grateful that he is able to attend this clinic. I am so grateful that there are amazing, giving, interested people who go to college and study how to help kids like Caleb and then make a career out of it. It’s an abundance of riches showered upon Caleb and, by extension, the rest of our family.

So why did it knock me out?

For six pages, I had to rate questions like: “My child accesses the sink and obtains all grooming supplies.” Caleb knows he has to brush his teeth, and he can move the brush around his mouth, but unless I go back over his work, his teeth are not adequately cleaned. 22Q kids have lots of dental problems so I need to navigate the Sonicare toothbrush around his mouth, floss his teeth and then brush his teeth with ACT Restore because he can’t swish and spit.

Another statement was: “My child chooses clothing that is appropriate for the time of day, season and occasion.” Caleb can dress himself with modifications like draw-string pants and pull-over tops. Without guidance he will choose flannel pajamas in 102 degree heat and a short-sleeved ventilated t-shirt on a 28 degree day. I never thought about him not being able to figure out what to wear based on the temperature. I had thought he was doing really well, but this questionnaire slapped me with the unwelcome realization of all he is unable to do.

At the end of the 20 or so minutes it took to complete it, I was exhausted. It’s taken me several hours to understand why. This is a huge improvement over when he was a very young child. Then, I would fill out this type of paperwork and spend the rest of the day exhausted. I  just kept going, never taking time to digest the toll it had taken. I don’t think I could afford to do that at the time. After over 18 years of practice, now I do take the time and allow myself to break down a bit. It sounds odd, but this is a present to myself.

These types of questionnaires (or IEP meetings or regular visits with the developmental pediatrician) are exhausting because they make me account for all the things Caleb can’t do. They remind me just how far we swing from the typical world. I usually go through a day performing the tasks of several adults in my care for Caleb. From showering him head-to-toe to preparing and cutting all of his food, to his bedtime story every night, I am on automatic pilot. It’s been so long that the only time I realize how much I do is when I catch strangers looking a bit too long as I tie his shoe in the supermarket or order for him off of the children’s menu. The world sees a 6’1” young man. I see a five year-old child.

I have several boxes filled with evaluations, questionnaires and IEPs from almost two decades of Caleb’s life. I know they are useful tools for all of the amazing people who teach and lead my son to the greatest independence he can obtain. When I hand them back to whoever requested them, a tiny chunk of my heart goes with them. Forced to evaluate what he can and can’t do, great volumes of my energy leave my body with each answer.

It’s taken me 18 and a half years to finally recognize this phenomenon. And it’s taken me that long to allow myself to feel the sadness, rest and recover after filling them out. I hope that moms of younger kids with special needs will read this and allow themselves the time to recuperate, instead of always pushing forward and always pushing through the pain. With all of the demands we face as caregivers, we need to care for ourselves in the same way we care for everyone else.

I have decided I will reframe all of these situations. Instead of letting them drain my energy, I am going to visualize myself giving energy to those who requested my answers. There is a huge difference between what is taken and what is given.

Caleb is all set up with a Disney movie in his room. I’ve got a date with a bowl of popcorn and my DVR.

Sully, Captain Jack and the Baked Potato: An Insider’s Guide To Caleb’s Sense of Humor

A friend told me the other day that she likes my blog but it’s so sad she can’t always read through. This took me back a bit, because while Caleb’s is a sad situation, he is one of the funniest people I know. His therapist tells me humor is a sign of deep intelligence, and that Caleb couldn’t be so funny if there wasn’t a lot going on in his head. Let me share a few of my favorite Caleb stories.

When Caleb was five years old, he was in a self-contained class with only three other boys. One of them, Emmanuel, was constantly testing limits and being sent to time-out. Caleb has a heart that hurts when his friends hurt—he was upset for his friend being in time-out and for his teacher being upset because he adored her. So on a December Sunday, when our pastor flung out her arms and proclaimed, “Rejoice! Emmanuel is coming!” Caleb grabbed the arm of my shirt, his face went almost white and he said in a normal voice, not a quiet church voice, “No Emmanuel coming! No!” Caleb was well-loved in that church, so chuckles abounded.

That spring, we were taking a walk in our suburban subdivision, along a path we often walked. There were no farms anywhere near us. Out of one of the bushes popped a rooster. Sophie screamed, I jumped back and Caleb calmly said, “Oh, hi chicken.”

Around this time, we introduced Caleb to miniature golf. Sophie went, I went, then I stood behind Caleb to teach him how to hold his club. He looked at me, looked at the hole, picked up his ball, walked over and dropped it right in. He looked back at me again, like “Why do you make things so hard?”

Caleb loves movies, television shows and music. He memorizes lines and even though it may seem to be above his functioning level, he knows exactly when to use each phrase. When he was in sixth grade, we had friends over for pizza one night. One of them chose a particularly large slice and said, “That’s so big!” Caleb smiled from across the table and said, clear as day, “That’s what she said.” Everyone laughed so hard that he put this phrase into regular rotation. He also picked up “Oh, you gotta be kidding me” from somewhere and that one pops up pretty often too.

We had a pool in the backyard of that house. One day, Caleb was floating around when he noticed the brown house next door was being painted green. His eyes lit up and he said, “Mom, make it red!” pointing to our house. It reminded me of the scene in Sleeping Beauty where the fairies are fighting over a pink or blue dress for Aurora. I would have loved to wave a wand for him and make the whole house red.

Around this time, Caleb broke his femur. He was in a series of body casts for three months and was taking pain medication for a while. Pain meds are notorious for constipation issues, so when his stomach was so swollen it was pushing against the cast, I had to give him an enema. I explained what I was doing, but can anyone really be prepared for those things? As soon as I finished, he looked up at me and said, with perfect diction: “What is wrong with you?” A few minutes passed, the enema did its job and Caleb looked at me and said. “Oh. All better. Thank you.”

Caleb was blessed by a Make-A-Wish trip last year and he chose his favorite place, Disney World. We were walking through Frontierland when Peter Pan came skipping by. Caleb thinks of Peter Pan as a dear friend so when he passed, Caleb just yelled out, “Hey, Peter Pan!” The young man portraying him that day saw the Make a Wish badge in a flash of a second. He stopped hopping and told Caleb where to go wait and he would come see him in a few minutes. Caleb was like, “Yeah, you will. We’re buds.”

My aunt convinced Caleb that he would like the ride Star Tours, which we had never ridden. She said that since all boys like Star Wars, Caleb would love this virtual reality ride. We sat down, buckled ourselves in and in the first millisecond of movement and sound I knew we had made a terrible mistake. Caleb looked at me, eyes afire and clapped his hands in front of my face. I kept telling him I was sorry and that if he closed his eyes it wouldn’t be so bad, but he kept clapping away. I knew he wasn’t in danger of any steep drops and that once the ride was over, he would be fine. His anger was actually a good sign—he focused so much on that that it took his attention off of his fear. As a special needs parent my choice is often either to cry or laugh my ass off and I chose laughter that day. He was totally fine when we got off the ride and to this day, when I mess up or burn his toast or whatever, he says, “Just like Star Tours!” He hasn’t let my aunt live it down either.

Sophie has been dating her boyfriend Al for almost four years. We all adore him. The first time he came to the house to meet Caleb, Sophie primed him with all she could to prepare him for anything Caleb might say or do.  Sophie and Al sat in the family room and called for Caleb to come say hi. He did, wearing only a t-shirt. At 14 years old. To this day, Sophie and Al call Caleb Winnie the Pooh, due to the similarity in their wardrobe.

One of Caleb’s favorite movies is Monsters University. Since Caleb is a giant himself, he identifies with Sully. There’s a scene where all the monsters are at a fraternity party, with loud music, strobe lights and lots of dancing. Sully is standing off to the side when Squishy throws an imaginary rope to get Sully to dance. Sully laughs it off, then sort of side-shuffle-dances his way into the crowd. Caleb does the best imitation of this you could imagine. He also does a mean Captain Jack Sparrow.

The incident that led me to write this blog happened just the other night. I had made chicken and baked potatoes for dinner. I haven’t baked potatoes in a long time, so I dressed Caleb’s with sour cream and cheddar cheese, set it before him and then went to get my plate. By the time I sat down, Caleb had picked up his potato, folded it closed and was eating it like a sandwich, skin and all. I started to giggle and said, “Here, honey, eat it like this,” modeling the use of a fork. Caleb shook his head, said, “No. Like this,” and kept chomping away.

I always say that Caleb has had to conform in so many ways to live in our world. I think conforming some of my ways to his is a better idea, because his world is a much more fun place to be.

Sick Daze

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)

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

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

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.