A Reminder to All Parents of Kids With Special Needs That You Are Not Alone

In 1997, when Caleb was about six months old and had just undergone his second heart surgery, I decided to attend a support group for special needs moms. The first speaker was the mother of a 19 year-old son with Down Syndrome. She stood behind the podium, tightly gripping the edges. Anger creased her face before she spoke her first sentence.

“People keep telling me that I got my son because I’m such a good person,” she began. “If this is what you get for being good, then next time I’m coming back as a bitch.”

The room hushed in a communal breath. I have thought of that woman so many times. That cold night in 1997, she frightened me. I ashamedly thought she must not love her child, certainly not as much as I loved the sweet little bundle I was missing as I sat in that conference room. Now I know better.

That woman was dealing with the cumulative effects of caring for a critically ill child. It had been 19 years of hospitals, IEPs, sleepless nights, exclusion and isolation. It had been 19 years of pouring every drop of her love into every breath her child took. It had been 19 years of living with a broken dream, even if she didn’t realize that.

We all have dreams for our lives. For some it’s a happy marriage, for others a fulfilling, satisfying career. The truly brave shoot for both. Often built into those dreams is the assumption of healthy children. How many times have you heard “We don’t care if it’s a boy or a girl, as long as it’s healthy.”

What if it’s not?

I’ve said this before, but there are more individuals with special needs living now that at any point in the past. Medical advances have far surpassed community and education needs, let alone the financial challenges of raising a child who needs to be supported from every angle.

I wish Doctor Who’s Tardis could land in my front yard and take me back to that room in 1997 so I could hug that woman. I wish I could tell her I understand and that she’s not alone. I wish I could tell her to seek God’s grace in her darkest moments because I know there were so, so many.

Just last week in a neighboring county, there was yet another story of a mother with an adult daughter with special needs. The mother was old and feared for who would care for her daughter when she died, so she attempted to kill her daughter and then herself. This happens way too often. Thankfully the plan was interrupted and her daughter is fine, although she is now without her mother who is in jail. This story speaks to the deep well of fear that so many of us live with, about what will happen to this precious soul we have loved. We have cared for them through the hospital visits, the IEPs, the sleepless nights, the exclusion and isolation. It’s hard to imagine who will provide that level of care when we are gone.

The words of that woman from the meeting have hung over me in ghostly vapor for my own 19 years. She was part of the inspiration to write this blog, to reach out to others who are worn down. Other people’s misguided words had given her the thought that she was being punished for being good. It was pain heaped on top of pain.

Last night I had the privilege of watching the movie adaptation of Don Piper’s nonfiction book 90 Minutes in Heaven. I won’t spoil it for you, but the book jacket will tell you that in 1989 he was in a horrific automobile accident and declared dead for 90 minutes, during which time he went to heaven, only to return to a broken body and months of soul-testing recovery.

Part of Mr. Piper’s recovery was a tortuous device called an Ilizarov frame which is designed to help pieces of bone grow together in an effort to fill in the empty space created by trauma. The device is simultaneously a miracle and evil. Regrowing bone is so excruciating that we don’t have a word for that level of pain. It takes almost no imagination to completely empathize with the depression that swirled around Mr. Piper during his recovery.

In one of the final scenes of the movie, I finally saw the closed parentheses of that woman’s statement from so many years ago. Don Piper spots another person in a crowd who was wearing an Ilizarov frame. He crosses the crowd to tell the young man, “Well, that really hurts, doesn’t it?”

The young man replies, “Yeah. It hurts very much.”

Mr. Piper responds, “Yeah, I know. Believe me, I know.”

In the film, the young man recoils at first from Mr. Piper. Then he looks cynical. Then Mr. Piper explains that he was in the same device for eleven months.

“It’s horrible. It’s just horrible. It’s awful.”

“Nobody ever understands,” the young man says.

“They can’t. It’s not something you can talk about and have anyone understand your pain.”

They introduce themselves and Mr. Piper says, “You’ve just met someone who understands.”

That is what Neverland is. This was the end parenthesis to that woman’s cry that she was being punished. We are all in the same spot. We all live a pain that no one outside can ever fully understand.

Yet I would cross a room for you and I know you would cross a room for me.

Let’s look at parenting our wondrous, special needs children not as a punishment or reward. Let’s accept that God chose a reason we aren’t able to understand. In preparation, he gave us others along our journey. We can find each other and simply say, “Believe me, I know.”

If you’ve read my bio, you know that Caleb is not actually my son’s name. He can’t consent to my writing about him so it’s not ethical for me to use his birth name. I chose the name Caleb because after 40 years of wandering in the deserts, out of all of the Israelites, only Caleb and Joshua actually saw the promised land. I know that my son will stand proudly in the promised land one day. Caleb is unaware that I even write about him but after I chose this name for him, his favorite prayer partner became Moses, which is beautiful in a way that only Caleb could create.

Caleb is the hero in this tale. He is the one who has overcome and continues to overcome so many obstacles that would truly floor almost anyone else.

Just this week, my sweet giant of a boy needed to have a sedated cardiac MRI. Something is going on that routine testing is not able to tell so his cardiologist ordered this test. What should have been a 45 minute exam swelled to well over two hours. Caleb was allergic to the Tegaderm holding the IV in place. Several other medical missteps occurred which I was fortunately able to address and redirect. I know I was annoying to the doctors and nurses but two of the missteps literally could have killed Caleb so I am completely unapologetic.

After the exam, Caleb was moved to a recovery room while we waited for him to wake up. I was stroking his hair and telling him what a great job he did. Soon his eyes fluttered and he looked right at me.

“Hi, Mom. What’s for lunch?”

When this life as Caleb’s mom becomes overwhelming, I need to stop and remind myself that Caleb is doing great. He’s happy and he loves the life I’ve helped to create for him. He trusts that God is with him and that his needs will be met.

I’m the one who needs to learn from Caleb. I need to model my choices on those that he makes. I need to trust that God loves Caleb even more than I do and that he will watch over everything for this amazing young man.

In the meantime, anyone out there who is feeling like they are on the other side of the promised land, remember this: we are all here in this virtual version of Neverland. We can support each other online and through prayer. We don’t need to feel so alone.

My favorite quote from the book 90 Minutes in Heaven is this: “Sharing my experiences is my way of crying with others in pain.”

That’s it. Let’s not be isolated and angry and scared. Let’s share what we go through and cry together and work through that pain. Like the great Don Piper, let’s be here for each other.

If we meet others who are in anguish like that poor woman in 1997, let’s simply say, “That really hurts, doesn’t it? Believe me, I know.”

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

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

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

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

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

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

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

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

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

I wish you all a very merry and peaceful Christmas.

We Need to Change How We Treat Anyone With a Disability

Last week one of the American presidential hopefuls publicly mocked Serge F. Kovaleski, a NewYork Times reporter who, despite a diagnosis of arthrogryposis which restricts his joint function, has made a career at one of the top newspapers in the world. I’m not a fan of anything this presidential hopeful says. I find him racist, misogynistic, arrogant, and worst, of all, uninformed. This latest action upset me deeply, on behalf of the reporter and all of the other disabled people in the world.

My mind works like molasses. I remember reading my favorite Little House on the Prairie book where Laura talked about pouring molasses on snow and waiting while it became a sweet treat. Even at the age of eight years old, I remember thinking: that’s how long it takes me to process anything. My thoughts are molasses, slowly seeping through the snow until they are absorbed. It’s still the same.

So it’s taken me a few days to examine this latest buffoonish action. It’s taken me a few days to build up my heart’s suit of armor to watch the endless video clips of the exchange. And then it took much longer for the emotions to percolate from the place where they normally securely reside securely deep, deep in my well-protected heart.

From the day my precious son Caleb was born in 1996, there have been whispers. There have been curious stares. There have been unasked questions in people’s eyes about whether, perhaps, I caused my child’s disability. In the case of 22Q Deletion Syndrome, neither I nor his father caused the genetic blip. But I have come to believe that even if we had, it wouldn’t make a difference. Parents of a child with any disability don’t need any more emotional garbage than we already heap upon ourselves.

As a young child in the 1970s, when I wasn’t pouring through the Little House series, I remember very few instances where I saw anyone with a disability out in public. There was a little boy in a drug store who I unforgivingly followed from aisle to aisle, trying to figure out what made him different. There was a classmate whose brother had autism—she rarely had friends over because, well, just because. There was a neighbor down the street whose brother had gone from genius-level to mentally retarded because his parents had given him a new drug to stop bedwetting.

Today there are more people living with special needs than at any other time. We all need to change how we treat them.

My molasses mind is also not the best at memory. I pray that I never acted cruelly to anyone who was different. I pray that I never called anyone the R-word. I pray that, aside from that young man I stared at, I didn’t make any other parent or child feel even more exposed than they already felt.

But I’m not perfect, so I pray for forgiveness if I did do any of these things. As my daughter Sophie and I have said so many times, I hope I would not act like so many of the people we have encountered in Caleb’s life who have been cruel. But without Caleb I will never know for sure.

The main reason I write this blog is so other parents like me realize that they are not alone. Sometimes knowing that has been the sole reason I could get through a day. The other reason I write this is to give a glimpse to those who don’t have a special needs child. I want everyone to know that we parents of special kiddoes love our children as much as they love their children. We don’t see disability when we look in their eyes—we see our babies and the love is just as powerful and soul-soaking as the love any parent feels for their child.

When viewed through this prism, I hope that typical parents may choose to not stare when one of our special kids acts up in the grocery store. Or when they walk through the hallway at school. Even if it’s a typical child having a tantrum, it does no good to stare or whisper. We’ve all been there, so either smile sympathetically or walk away.

So much awareness has flooded the culture that I really hoped we were making strides at accepting everyone regardless of anything that might make them different.

Then this man not only called out the reporter, he also made mocking hand gestures. He altered his voice. He contorted his face. The man he so callously and ruthlessly mocked was so high-functioning that he became a reporter. He deserves infinite respect, not derision, and certainly not condescension from someone who is seeking to be the leader of one of the most powerful nations on the planet.

Like I said, my brain functions like molasses sinking into snow. It took me three full days to understand why this event upset me so deeply. It took days for me to burrow into my soul, find the thorn of insult and, pull it out and examine it in bright sunlight.

I learned that what hurt the most was the knowledge that this man’s view of a man with physical struggles was not unique to him. There are ignorant, uneducated and cruel people out there who will judge another living, breathing human being based on their differences. These shallow beings want to reduce my son and anyone who is the slightest bit different to an inferior species.

In college, I took two courses on the Holocaust. I studied slavery in America and the civil rights movement. I studied domestic abuse. In my continuing studies, I’ve listened to and read stories from gay and transgendered individuals. One consistent theme in all of those studies was man’s inhumanity to man. I am constantly floored by how deplorable we can be to each other. The underlying theme, weighed down by shame like a broken muffler dragging underneath a car, is the immense hurt that people can inflict upon their very own kind. Those classes changed me and gave me a soft heart toward anyone who is belittled or badgered or excluded for being different.

I am not claiming to be more enlightened or more sympathetic than anyone else. I’m simply the mom of an extraordinary young man who was born missing a tiny piece of his 22nd chromosome. He did nothing to cause this. He knows no other reality. I am awed by his mental, physical and emotional strength every single day.

I am disgusted that anyone, presidential hopeful or not, could not only not value others but also degrade those who deserve enormous respect. I am reminded that there are horrible people who pride themselves for making snap judgements and view themselves as somehow above anyone else. There are people who truly believe they are better than anyone else.

I am profoundly grateful that my son is pure, undiluted light. My son is strong. He’s the strongest, funniest, most introspective man I’ve ever known. He has had to learn to live in our world, when his world makes so much more sense to him. He’s overcome challenges and trials that would fell a weaker person. Everyone who meets him is entranced by his smile and his deep grizzly bear giggle. I am fortunate to bask in the light of his soul.

People who choose to focus on anything any of us is missing have no understanding of all that we are. They are the ones who have the real handicap.

There Really Are Angels Among Us–We Need to Allow Ourselves to Let Them Help

One of my favorite Bible quotes is from Psalm 103:20: “Praise the Lord, you his angels, you mighty ones who do his bidding, who obey his word.” One of my favorite lines from a worship hymn is from Chris Tomlin’s Whom Shall I Fear (The God of Angel Armies): “I know who goes before me; I know who stands behind; the God of Angel Armies is always by my side.”

I need to preface today’s blog with some information on me. I’m 46 years old but somehow have such debilitating arthritis in my neck that I need a neurosurgeon to remove one ruptured disc that is leaking into my spinal cord and also the one above it, which is basically dust at this point. Somewhere between them is a bone spur.

I haven’t been able to feel most of my right arm and hand since January, which makes caring for Caleb excruciating at times. Surgery is in a few weeks, but until then, every movement is pain. I’m tired all the time. I hate pain meds and even though I specified non-narcotic so I’m always able to care for Caleb, they make me feel, to quote my favorite Friend, Phoebe, floopy.

Last Monday was Caleb’s 19th birthday. He spent Saturday with his dad, so I took the opportunity to walk around our gorgeous downtown with my daughter Sophie and her sweet boyfriend Al. We didn’t get very far before both of my legs went numb and tingly. This had never happened before so we sat down and waited for it to pass. When I called my neurosurgeon on Monday, I was told this was the bone spur acting up. I’m not quite on bed rest but all of my activities need to be extremely limited because if I fall, I will need a completely different kind of surgery.

When I picked Caleb up on Sunday, I was super excited because I had rented a red SUV for two days. Whenever Caleb meets someone new, he always asks: “When is your birthday? What color car do you have? What kind?” He has hundreds of car brochures neatly filed in three bookcases in his room. On his walls, he has old-fashioned tin car signs and a brand-new Ford poster his grandpa gave him for his birthday. He can identify any car by their symbol.

Caleb was a little in shock about the car but then he began his happy growl. It’s a deep laugh, almost a purr, that crescendos into a high giggle. It is one of my very favorite sounds. He talked the whole way home about different parts of the car that he liked. He begged me to buy one in the future. Mostly he was just so happy sitting in the car.

So, here’s where the angel part comes in. On Monday morning at 10:15 I was supposed to arrive in Caleb’s class with cupcakes for everyone. I usually bake them, but with all my physical limitations, I ordered them from my favorite grocery store, Publix. I should mention one of the worst parts of not feeling my hand is that I’m clumsy. Exceedingly clumsy.

I went to the bakery, picked up two layers of confetti-covered cupcakes perfectly packaged in hard plastic so they each had their own little space. I couldn’t wait for Caleb to see them. I paid and made my way out to the parking lot. I was looking for my regular car, and holding the keys for that car in my hand. Duh. I put them back into my purse, then, carefully balancing the cupcakes, I searched through my purse to find the rental car key. I found it but I had to look at it to remember which button unlocked the car.

Door open, I set down the vanilla tier on the floor of the front seat. Because I can’t feel my hand, the keys fell on the ground so I stooped to get them and in the process dropped the chocolate tier of cupcakes. They landed with a soft thud. Not one of them managed to stay in their happy little cubicle.

I wasn’t able to form a thought. I wasn’t able to cry. I was staring at the mess, calculating that I needed to leave right that minute to get to Caleb’s class on time. I just kept staring.

That’s when I heard the sweetest voice ask from somewhere behind me, “Do you need help?”

My knee-jerk reaction to this question is always, “No, thanks, I got it.” But as I stared at those cupcakes I knew I didn’t have it.

I turned back to see a woman with a confident smile. I trusted her right away and I knew she could help me.

“I don’t know what to do,” I said. “I can’t feel my hand, that’s why I dropped them. I need surgery. These are for my son with special needs who turns 19 today. I have to get them there.” (Sophie will back me up here; I always overshare on first meetings)

“Let’s take them back inside. They’ll re-frost them and you’ll be on your way.”

“I’m Kate,” I said.

“I’m Kelly,” she said, and pulled me into a hug.

“Why don’t I carry those?” she asked. I swear, her eyes sparkled and it was like there was this heavenly glow around her. She was just that kind. In my cynical world-view I can only see her as an angel, though I know she’s real because we emailed and we have plans to meet.

Here’s where the story turns. Kelly politely explained what happened to the woman at the bakery. The poor decorator had just gone on break but they went and found her and she immediately fixed all of the cupcakes.

While we were waiting, Kelly told me that her son has high-functioning autism. She told me she’d been having trouble finding services for him. This is a subject I can discuss in my sleep so I instantly changed from the pathetic woman who dropped the cupcakes in the parking lot into someone who could help this darling woman. I rattled off a few agencies and doctors names that were new to her.

By then, the cupcakes were finished. We thanked the decorator profusely and Kelly wisely carried the cupcakes to my car. Then she said, “Hold on,” and went to her car to get a bag we could set the cupcakes in so I could carry them to Caleb’s class without further calamity. Pre-injury me would have done the same thing, but I’m just not me right now. And that’s a great thing because if I had been the regular me I would never have met Kelly.

I turned to hug her again and thank her for saving the cupcakes. “You’re an angel,” I said. “God knew I needed you right then. Thank you so much.”

And she said, “No, you’re an angel to me. I’ve lived here about a year and haven’t found anyone who knows as much as you do.”

When Caleb was growing up, there were, and still are, many dark days. I often wished that I could meet someone who’d been there before, who could lead me out of the dark days. I wished there was an Angie’s List for special needs doctors and schools and therapists. Like any other businesses, there are good places and not so good places.

I am not saying I’m an angel in any way, shape or form. I am ridiculously human and I mess up all the time. But I do have some knowledge that I pray will help Kelly. And it is my sincere hope that those who read my blog, even if they’re really far away, will find hope and the courage to go through another day. If they can see that Caleb and I have made it this far, maybe we can leave behind enough breadcrumbs that they can follow us through the crazy forests of Neverland.

Here’s an Invaluable Tool For Identifying Anyone With Special Needs

QR-code-id-shoe-smlAll parents are partially ruled by fear for their child’s safety. Every special needs parent shares a unique fear: what would happen in an emergency if I wasn’t there to assist my child and spout off the two pages of medical facts that are constantly updated and stored in my brain? I can only imagine that Caleb would be terrified and that his fear would compound his low verbal level and lead to either a meltdown by him or utter helplessness for those trying to help him.

Years ago, I purchased an alert bracelet for Caleb with a phone number someone could call to learn all of his medical information. The bracelet mentioned that he wouldn’t be able to communicate his pain level or any of his medical history. Sensory issues made this, and the following necklace, unbearable for Caleb to tolerate.

I started keeping a two-page document in my glove box, but that assumed that the glove box would be searched or that my incapacitation would be limited to a car problem. Caleb doesn’t carry any identification, so he is vulnerable wherever he goes. What if something happened on the bus home from school? Or on a field trip? Or if we were separated somehow in a crowd?

In the interim, I have lived with the fear of what could happen to my precious son if I wasn’t there, or wasn’t conscious.

A few weeks ago, a friend re-posted a Facebook post by a woman named Denise Beasley Carter who runs a Facebook page called And Then They Grow Up. Ms. Carter had actually gone through the nightmare so many of us fear. She was in a car accident with her adult, non-verbal son who has Down Syndrome and Autism. Ms. Carter was trapped in the car and was unable to speak for her son right after the accident. Thank God they were both okay, but the incident led her to consider designing a product that could help in similar situations.

Then she found ifineedhelp.org. This 501c3 non-profit organization was founded by Bruce and Erin Wilson, parents of a 13 year-old son with moderate to severe Autism and very limited language ability. Their son had been lost a few times and they knew they needed to create a product that would help him and others like him. They are both wonderful to work with.

Through the years I have met several families whose kids with Autism will suddenly bolt from home. These kids are lightning fast and often run through the backyards of neighborhoods, not along sidewalks or roads, so they can be lost in an instant. One friend found her son several blocks away in an unlocked car he had found. He promptly locked the car and fell asleep. Another friend’s daughter left their home one day, trying the front doors of all the homes on their street until she found an unlocked one, entered the home and went through the house and entered the backyard pool. She couldn’t swim, but thankfully she was found before any injury occurred.

The beauty of ifineedhelp.org is that they offer many different products, such as t-shirts, patches, pins, clips and shoe or dog tags. Each item can be personalized by the purchasing caregiver. I bought the shoe tags because they will pose no sensory issue to Caleb. The metal tag has his name, my phone number, his father’s phone number and a code that can be scanned by any smart phone equipped with the free app QR Reader. If someone doesn’t have the reader, they can go to the website and enter the numeric code on the side of the tag, which will pull up all relevant information. There is also the ability to send an emergency email if necessary from the site.

The site also features car decals, key chains and a wonderful two-sided door lock that would foil the most skilled of our incredibly bright children.

For Caleb’s shoe tag, I entered the highlights of his medical conditions, including the fact that he wouldn’t be able to communicate how he’s feeling. I also included allergies as well as current medications and dosages. With my password, I can edit the information at any time so it will always be the most up-to-date.

I have been talking with so many families since I found out about ifineedhelp. There are so many more implications for this groundbreaking product. A preschool teacher of typical children told me she wants to share the information with the parents of her students. A woman whose husband is in the advanced stages of Alzheimer’s disease said she wants to order tags for his shoes. The tags would accelerate help for anyone with non-obvious medical needs such as diabetes or seizure disorders. I’m remembering a fifth-grade field trip for my daughter’s typical class where the tags would have been incredibly helpful.

I am hoping that, through the generosity of Huffington Post and other websites where I post this blog that we can encourage all first-responders to automatically look for these tags.

I have always told every doctor who has treated Caleb that I am his voice. Now there is a wonderful array of products that will be able to speak if I cannot.

The Saddest Part of Being a Mom To a Young Adult With Autism

There is a very lonely part of being a mom to a young adult with autism that we don’t often talk about. I am very down as I write this and it is my hope that if you’re reading this, and you are also down, we will still be sad, but sad with company, which somehow makes it better.

Caleb has been struggling with a few new things this school year. I am limited in how I can help him in so many ways. I don’t know everything that happens in a day, despite wonderful communication with his amazing teacher. Someone might look at Caleb wrong or a fellow student may bang a desk and send his day spiraling. The tiniest infraction that no one else caught can absolutely ruin his day.

Like many typical boys, Caleb doesn’t want to talk about what’s bothering him. He will hold it in for days, weeks, or longer, often divulging things to his marvelous therapist that happened a while back. His therapist and I will scratch our heads, wondering how awful it must be to have pain nestled like a thorn in your foot for months at a time. If it were a physical thorn, the damage could be as extreme as a gangrenous infection. I believe the emotional equivalent is just as devastating.

I can tell when Caleb’s suffering and I do all the things that worked with my 20 year-old typical daughter. They don’t work with Caleb. He barely tolerates touch on a good day, so offering him a hug when he’s upset is like offering someone hot coffee on 100 degree day. Blame his innate temperament, autism, being male—whatever. It all leaves him sad, angry or frustrated and it leaves me devastated.

One of the most difficult things special needs kids face as teenagers is that they have mental, physical and behavioral challenges and they are still physically teenagers. Even with awesome teachers, therapists and in Caleb’s case, a wonderfully supportive public high school, it’s still high school. High school is challenging to almost everyone—I can’t imagine how Caleb balances all of his regular challenges, plus hormones, plus being around other teenagers. It must be unbearable, and that is what I’m focusing on as I’m trying not to cry as I write this.

Every night at the same time, we eat dinner together. This means I prepare everything, cut it all up and serve it with his favorite plastic-handled spoon from when he was a toddler. Metal spoons aggravate him. Then, because Caleb is completely exhausted, I help him prepare for bed. This means crushing his nighttime meds and sprinkling them atop a shot glass full of chocolate milk so he can swallow them.

The next steps are washing his face, brushing his teeth, flossing them, applying an enamel-restoring rinse, then applying prescription acne medication and popping his retainer in his mouth. Then he selects one of his many books and we read a bed-time story. He will be 19 this month, but the story is his decision—he looks forward to it and if we have company over, he loves to have someone else share in this ritual. It’s almost always a happy occasion, with laughter and bonding and all the lovely things a good story can bring. We close with bedtime prayers, then I turn on his nightlight and quietly leave the room.

To someone who doesn’t have experience with autism or profound special needs, I can imagine that Caleb’s schedule reads like I am a controlling mom who won’t allow him to be independent. Nothing could be further from the truth. Over the years, I’ve worked with occupational therapists to help him gain independence, but the physicality and skills just aren’t there.

Caleb is blessed by a truly remarkable dentist who has treated him since he was two years old. A few years ago, she pulled me aside and asked if Caleb had been brushing his own teeth. When I answered that we were trying that, she gently told me that his teeth were being affected and I needed to perform his oral hygiene for him. I have received the same advice from other doctors about his basic hygiene.

So, back to the bedtime routine and what happened today. Caleb came home from school unusually tired. I asked him if he wanted to talk and he said, “Leave me alone.” That sounds harsh, but it’s actually the result of years of really hard work. When he was younger, he would hit himself in the face or scream or just run out of the room. When he says those words now, I understand and let him retreat.

In the last two years, Caleb has created a new sentence which he uses when he is particularly upset: “I be big boy.” This means he doesn’t want me to assist him in getting ready for bed or reading a story. It seems to me to be a form of self-punishment; he’s in pain which he doesn’t understand and he simultaneously somehow blames himself for the pain, so he takes away all nurturing. He takes away his favorite ritual.

I listen from another room as he brushes his teeth and puts in his retainer. This happens so rarely that I allow the slight disruption to his otherwise extensive hygiene. Something much deeper and very painful is happening for him and with all he has to deal with, I step back.

On nights where he’s partially upset but able to tolerate some of my attention, we get through all of the hygiene, but when we’re reading a story and I laugh, he will say, “Don’t look. Don’t smile.” I’m not sure what is going on when he says this, but it’s a boundary he has created and I respect it.

When Caleb says any of these statements, I quietly retreat and give him space because that is what he is telling me he needs. As I wrote above, I can’t imagine what one minute of Caleb’s world is like. His entire body hurts. His language tests around age five, but it is so disordered that many people can’t understand him. He lacks the basic ability to communicate. His heart doesn’t function properly. His balance is not good so every step takes meticulous planning. Gross and fine motor movements are difficult.

Caleb’s geneticist once told me that in Caleb’s brain, there are cul-de-sacs where healthy brains have freeways. This is a hallmark for 22Q Deletion Syndrome, but that doesn’t make it any easier for Caleb to live with. He has words, feelings, opinions, complaints, thoughts, daydreams, real dreams, cravings, longings, memories and hopes that can’t find their way out of what I know deep in my soul is a gorgeous mind. Everything gets stuck. He gets stuck.

After dinner tonight, Caleb stood up and said, “I be big boy.” It was an hour earlier than his already extremely early bedtime, but I said, “Okay. I love you.”

Fifteen minutes went by and I could hear him listening to something on his iPad. I stood outside his door and could tell from the space under the door that his overhead light was off and his nightlight was on. I hesitantly knocked three times, just like he likes.

“What?” he asked.

“Can I come in, sweetie?”

“No.”

And that was it. There was no screaming, no major blowup or incident. It was a quiet slice in a mama’s heart. I was standing on the other side of that door with a floppy metaphorical blanket of love that I wanted to drape over his shoulders and he didn’t want it.

This is the silent pain that everyone who loves someone with autism quietly bears. The emotional skills we have spent a lifetime acquiring and perfecting fail us. Our children suffer. We suffer because they suffer.

And there is nothing anyone can do to fix it.

It’s Called Handicapped For a Reason

Seriously, Modern Family?

Your show has given me great empathy for gay couples who want to marry. You have given me compassion towards families who are blessed by an interracial adoption. Your show makes me laugh and cry with its painfully accurate, often hilarious takes on what a family looks like in 2015.

Yours is the only show that my disabled 19 year-old son and I can watch together and both laugh. It is one of very few things we enjoy together. We both understand the humor, the characters and the Emmy-winning writing. Your comedy is so well-written that it is universal.

Will you try to imagine my outrage at September 30th’s episode? Luke is wearing fake glasses as part of the uniform he and his teenaged friends have chosen.

Alex says, “As an actual glasses wearer, this is offensive. It’s like non-disabled people who park in handicapped spots.”

Claire responds, indignantly, “I was in and out in three minutes, young lady. And it was your stye medication I was picking up.”

News flash, Modern Family writers: three minutes is too long. Why is it that you have opened the hearts and minds of millions to so many social situations yet you are trashing one of the few rights that belong to the disabled?

I’ve written before about how my family has been accosted for using our perfectly legal handicapped permit. A man went after my 19 year-old daughter who had taken her brother to the grocery store and parked in a handicapped spot. He followed her through the parking lot and ended up banging on her windshield demanding to know what the handicap was.

When my family and I exited a restaurant in Brandon, Florida, someone had taken the time to go into the restaurant, request a cocktail napkin and write a note to me, the driver, which essentially said that my only disability appeared to be mental retardation.

No one ever thinks a handicapped placard is for a kid. Maybe it’s too painful. Maybe it’s easier to think that someone is abusing the right to park in a handicapped space. Trust me, it is not, in any way, a privilege. In order to receive a legal placard, you need a doctor’s signature on a state-issued form, and you need to take that form to the DMV, and wait in whatever long-line hell is before you. There’s no special line for the handicapped.

My friends and I have been in countless situations where someone thinks it’s okay “just this once” to park in these spaces. No one who does this ever stops to think that maybe they took the last space. Maybe they took the space from the mom who has had to drag her disabled sick kid out to get acetaminophen. Maybe they took the space from the elderly man whose pain is so great that he risks the nerve-assaulting steps into the pharmacy just so he can get medicine to help with the pain.

It doesn’t matter. If you don’t have a permit and the handicapped person isn’t with you, it is illegal for you to park in that space. There’s no “it’s okay because it’s only three minutes” space. There’s no time it’s ever okay.

Here’s the raw, uncomfortable truth: handicapped spaces should be the least of our concerns. Our kids have pain and challenges that most of the population can’t begin to even want to understand.  When I requested Caleb’s doctor to sign for the form, he qualified in so many areas that she didn’t know which to fill out.

“Take your pick,” I said, trying to keep my chin up so I wouldn’t cry.

Here’s the bottom line: let’s all stop acting like it’s okay to ever, ever take up a handicapped spot if we don’t have the placard and the handicapped person in the car with us.

Trust me. You most likely would not want to trade even three minutes of our lives for three minutes of the blessedly uncomplicated lives that you live.