He’d just spent three weeks at the Yale Children’s Psychiatric Center. He was so excited to come home. He’d been there over Christmas break. It was a little disappointing, but we made the best of it.
When he finally walked through the door, carrying bags full of donated gifts, he looked at me and asked, “Can I dye my hair blue, Mom?”
I thought for a moment.
First, of all the reasons I should say no. What would his school say? I was pretty sure it was against dress code. What would other parents say? Would it damage his hair? Would it set a bad precedent? Would he ask for piercings next? Tattoos?
Then I looked at him — really looked. He was 8 years old. He had just been discharged from his seventh psychiatric hospitalization. Life is hard for Mateo. So little makes him happy. So little brings him joy. BMX bikes, the arcade, the rare movie he connects with… Was a little package of hair dye and some disapproving looks from strangers such a big deal if it gave him a moment of sheer joy? His friends at school knew he’d been to the hospital. They’ve seen him kick the wall in the hallway. They’ve seen the ambulance come. If I sent him back to school after winter break with blue hair, maybe he wouldn’t be known as the weird kid. Maybe he could be the cool kid — the cool kid with the cool hair.
This week has been a week of feeling, well, different from the rest of the moms. Of being acutely aware that Rufus is different from the rest of the toddlers. Of feeling like we stand out and wishing just for a second we could blend in.
I realized early in life I stood out from the crowd. As literally the only person in my primary school class with curly hair, I was brunt of all the curly hair jokes. As a teenager I did everything I could to change my hair so I could just blend in. Despite all my efforts, it kept growing back curly. It seemed there was nothing I could do to stop it
Maybe I grew tired of trying or maybe I just grew up. Whatever it was, one day I just decided I would fully embrace my curliness. I’m glad I did.
Fast forward to present day. I live in a vibrant, diverse community within a huge and creative city where having curly hair is completely normal and no one really stands out from the crowd. There are so many versions of “normal,” no one looks twice at anybody. Finally, curly-haired me blends in.
But, recently I’ve noticed that old, familiar feeling of being desperate to blend in creeping back in. Only it has nothing to do with the way I look anymore. It’s about the boy I spend all my time with and the increasingly obvious syndrome he carries around with him.
When Angelman syndrome officially entered our lives 9 months ago, blending in ceased to be an option. Life became about standing out, feeling different and unusual. It was pity-looks, the questions and then The Conversation — explaining the ins and outs of the syndrome and what the future holds for him. There’s no more blending in now.
The morning I got in the car after Rufus’s first trial swimming lesson, I felt a big old lump in my throat. The instructor and I realized early on the group wasn’t right for Rufus. Not only did his tiny, wobbly body look so different to the other normal-sized boys who were also nearly 2 years old, they could all follow instructions, walk, talk and were beginning to move towards independence in the water.
Don’t get me wrong, Rufus had a wonderful time. His continual beams, giggles and face grabs reassured me that he was having the time of his life. Anyone who knows anything about Angelman syndrome knows that water is a winner every time. But whatever the teacher was trying to get him to achieve, he wasn’t even remotely interested. So at the end of the lesson, as we started making our way out of the water she said, “Just hold on, I’d like a quick chat after everyone’s gone.”
Like any parent who is grabbed by the teacher at the end of the day, I knew he’d done something wrong.
And it was then that she explained she felt it was right to put him into the lower group, the group for 6-18 month olds. He’s 21 months old. Her reasons were absolutely valid and I agreed with everything she said. In fact, I would have suggested the same. He couldn’t follow instructions and wasn’t anywhere near independence in the water. But I felt sad. I felt sad that my boy was different. I think the instructor could tell.
“The last thing we want to do is to make you feel like you stand out,” she said.
I explained away my feelings and responded with, “Oh, it’s okay, I do anyway. We do, I mean. We always will. That’s part of the deal with having Angelman Syndrome.”
My “normal” is actually quite unusual for most moms. Every “normal” thing we try to do will always look different. Here was the rest of my “normal” week: Phoning his pediatrician for a new prescription; racing across town to collect the prescription in time; meeting a mom who looked at me strangely when I told her he was 21 months old; meeting with a health visitor and sleep specialist; racing across town again to deliver the prescription; being kept awake by him for two or three hours every night; meeting with a speech therapist for the first of six pre-language play sessions; collecting the prescription; buying shoes and realizing his feet are too big; feeling annoyed because there’s no point in spending loads of money on proper shoes when he’s not even walking; having The Conversation with a lady in the park and tripping over my words; being seconds away from calling the ambulance after he started going blue from choking on a piece of pear.
Our regular Angelman Syndrome moments are stand-out moments. I know we are different and I know this is the way our lives are, I just wish we could blend in sometimes. How I wish I could go to a swimming lesson and watch my son follow instructions like the other boys. How I wish his pediatrician’s phone number was not one of my most frequent calls this week. How I wish I could experience a regular toddler meltdown while shoe shopping.
But wishing will get me nowhere. Wishing to change genes is pointless.
But Rufus is absolutely pleased as punch to be the person he is. He’s here in the world living to the fullest. As far as I can tell from the ear-to-ear grins he gives us every day, he doesn’t wish to be different. If I’m going to learn from anyone about how to feel comfortable standing out in a crowd, I’ll learn from him. But I think I owe it to him to do better than just feel comfortable. I need to learn how to feel proud to be his mom in every situation, in every encounter with a stranger, every time I receive a pity-look and every time I so desperately feel like blending in. I need him to help me wear my Angelman Syndrome Mum badge with pride. I need to feel at peace with the way I am, the way we are and the way we’ll always be. And maybe, if I let him, this could just be the making of us.
We just came back from our family vacation. While we were very excited to go on vacation, I knew it would be a little difficult with our monkey. As special needs parents know, we have to pick and choose our battles.
For example, when we went a restaurant, we allowed my monkey use a tablet. We ended up getting a lot of stares. Other families weren’t very supportive of our son using a tablet during what is supposed to be family time. I understand. I used to be that mom. The mom who constantly compared other kids to mine. When I saw someone throw a tantrum, I would think, “My daughter would never be allowed to pull a stunt like that”or “I would never let my daughter tell me what to do.”
We did have a small dilemma in one of the restaurants when the waitress tried getting my monkey’s attention. When she realized he wasn’t going to look up from his tablet, she told us we shouldn’t be letting him use the tablet.After all, she said, this is family time. I explained to her that my son has autism, and this is the only way we’ll be able to have a nice dinner. The tablet will let us all eat in peace. This way, my husband, daughter and I can have actual conversations. If it weren’t for this tablet, we would be apologizing to the family behind us because our monkey wants to sit with them. Or we would be looking for his shoes under the table because he threw them. Or we would be running down the hall after him, hoping he won’t bump into someone with a tray stacked with plates.
My son doesn’t have a sign that he carries so everyone will know he has autism. Because of that, many people assume he is a spoiled toddler who cries when he doesn’t get his way. People don’t see his struggles. People can’t see how frustrated he gets because he can’t communicate with us.
While we were at SeaWorld watching one of the shows, my monkey was everywhere. He just couldn’t sit still. My husband tried so hard to keep him from disturbing the people around us. We tried so hard to get him to watch the animals, but it didn’t work. The show was only 20 minutes in, but it felt like hours. After it ended, an older man came up to my husband, patted him on the back and said, “Great job, dad!” Those words of encouragement were much needed.
Having my monkey has taught me to be more understanding, more patient and not to be quick to judge. We need to remember that everyone is probably going through something even if we can’t see it. So the next time you see a mom or dad struggling with their kids, try taking a different approach. Try giving them a smile. Or if you’re feeling brave, offer to help.Because you never know when something as small as a pat on the back is exactly what they need.
The Mighty is asking the following: What’s one unexpected source of comfort when it comes to your (or a loved one’s) disability and/or disease?If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our “Share Your Story” page for more about our submission guidelines.
Photographer David Jay’s photo series “The Unknown Soldier” takes a bold and unflinching look at the consequences of war.
Jay, a former fashion photographer, spent three years taking portraits of veterans returning from the wars in Iraq and Afghanistan. The photos document the lives and the stories of these young soldiers.
The large-scale photos are part of a nationally traveling exhibition and have been acquired by the Library of Congress as well. A documentary is also currently in production.
“It’s not how a man or woman wants to be seen,” Jay told Time. “However courageous they were on the battlefield, I give them a lot more for just standing in front of me, sitting in front of me, and allowing me to take their picture when they’re very exposed in every possible way.”
“Ultimately, ‘The Unknown Solider’ is not about war,” Jay writes on the series’ website. “It’s deeper message is one of humanity. It’s images transcend the politics, race, religion, greed and fear that drove us here… illuminating the scars that unite us all. Perhaps it’s about peace.”
In her post “The First Time My Son With Autism Got a Birthday Invite I Didn’t Have to Decline,” Tricia Rhynold describes the time another mom took an extra step to ensure Rhynold’s son could attend and enjoy an upcoming birthday party. This got us thinking: What other extra steps have people taken to insure every child, no matter his or her needs, is included? To find out, we turned to you, our Mighty parents. We asked you to share one thing someone has done to help your child with special needs feel more included, and you had some wonderful responses.
Here are 24 simple yet extraordinary stories of inclusion:
1. “A stranger once asked my son Ethan, ‘What’s your name?’ My son’s speech is not clear, but he said his name. The stranger bent down closer asked again and again and again until finally she understood him. Then, she responded, ‘Well, Ethan, I’m Mary, and this boy here is Adam.’ Adam was nonverbal, and his eyes danced as Ethan repeated the name ‘Adam.’ After watching both our sons smile and acknowledge each other in the middle of a hospital corridor, Mary and I are no longer strangers.” — Geraldine Renton
2. “Our friends keep their highchairs, long after their kiddos have grown, so our daughter with hypotonia can eat with her peers at birthday parties and dinners.” — Lyndse Marie Ballew
3. “Our local librarian lets my son with Asperger’s syndrome take home and read new library books related to my son’s special interest before the library puts them in circulation. They go above and beyond to make him feel a part of that place.” — Lauren Cockrell
4. “People sometimes make up special party bags for our lifetime tube-fed son. The bags have no sweets or cake and also no balloons because they’re a real texture problem for him. It’s always so touching when someone goes that extra mile for him — the smallest gesture can mean an enormous amount to us.” — Helen Bates
5. “When our town dedicated the new war memorial at the new park, my daughter’s Girl Scout troop had a part in the ceremony. When the organizers realized the processional route was not wheelchair accessible for my daughter, they changed it at the last minute so she would be able to participate with her troop.” — Sue Rutan Donald
6. “The kids in the neighborhood had a startup kickball game. Some of the older kids wouldn’t play unless my son pitched for both teams! My heart was full.” — Amy Scoggins Laster
7. “Our son is 3 and attends daycare part time. He was invited to a birthday party, which we were undecided about attending. Gatherings are hard enough with family, and this would be his first birthday party. Upon picking up my son from daycare, I ran into the birthday girl’s mother, who asked me in person if we received our invitation. She then told me how much they would love if my son could come. She loves seeing him every time she picks up her daughter — he gives her high-fives and is so always so happy. I loved hearing how she saw him for who is really is: a kind, lovable little boy.” — Carrynn Kels
8. “Our entire little town ensures that my younger sister (who happens to have Down syndrome) is never left out. She was the most popular kid in high school and always performed in talent shows to many cheers. The school administration and her class got together for her last day of school and arranged for a local police officer to come meet her and give her a drive around town (she even got to turn the lights on!).” — Melissa Graham
9. “My son’s mobility is limited to rolling, and he can only eat limited amounts of purees by mouth. We visited some friends for Easter this year, and they were insistent on including him in the egg hunt with the other kids. They set eggs out on a blanket that he could roll to, and they’d put stickers in the eggs. I was so touched, and my son had the biggest smile on his face.” — Kallie Locklair
10. “I took my two little boys to a local carnival with games and rides. My oldest, 3 at the time, has hypotonia and autism, and he can’t stand or walk without help. There weren’t really any games or rides he’d be able to go on because of his limitations. I hesitantly walked over to the bounce house and saw groups of kids going in at a time. Since he couldn’t move on his own, my boy would be trampled if I put him inside. A carnival employee saw me and asked if my boys wanted a turn. I gave her the short version of our story, and she smiled and said her son had similar needs. She let me take both of my boys into the bounce house and the three of us got to play in it by ourselves.” — Megan Hufton
11. “A good friend researched my daughters’ condition and had her children watch videos on it to prepare them before meeting them. The first time they met my daughters after I adopted them, they weren’t scared or left wondering what to do. They treated them like any other children. It was one of the most precious gifts.” — Katie Hurst
12. “A friend’s grandfather sat with my daughter for two hours while she drew drawing after drawing for him. He remained excited the entire time. He made her feel so happy and proud that he was so interested in what she could do.” — Rose Harrison
13. “We were at a Little Big Town concert, and one of the band members came over and gave my brother with Down syndrome a hug. Then she went and got each of the other members to come over and shake his hand. She gave him a guitar pick, too. He was so excited!” — Andrea Anderson Watkins
14. “My son with Down syndrome is learning to swim, so on the day of his school swimming carnival, another parent from the school got in the pool with my son and me to help him complete a race. The whole school came to the pool’s edge to cheer him on. He was so proud of himself. The school kids, that lovely parent and my son are all legends to me.” — Tanya Neilson
15. “My daughter has autism, and a couple years ago, she had a broken leg. We went to a restaurant, and our waiter seated her at a table in her wheelchair immediately. Emma talks quite a bit and asks tons of questions about restaurants when we go in them. Instead of brushing her off or ignoring her, this waiter was kind and patient as Emma stuttered out all she needed to say. He answered all her questions, spoke directly to her and made her feel special.” — April Charisse
16. “Tonight at our church vacation bible school, a new member of our church took it upon himself to slide endlessly down the blow-up slides with my son. He treated him just like his own son, and he did it all with a smile.” — Jill D. Powell
17. “My son was temporarily paralyzed due to a rare muscle disorder, and he was learning to walk again. His teachers made sure he was getting to play with other kids and while at gym time to help him use a trampoline without getting trampled.” — Leidy Jesse Garcia
18. “My 5-year-old daughter with disabilities attended her first birthday party with her typical twin brother. I had to keep her in another room most of the time because she couldn’t handle the chaos of kids running around, screaming, popping balloons, etc. We ventured out when the musician started playing kids’ birthday songs. When she finished, instead of packing up and going home, the musician approached my daughter with guitar in hand and sang ‘Twinkle Twinkle Little Star.’ It made her day.” — Raquel Bercovich Wadler
19. “A sweet family from our hometown invited our daughter with autism to be part of the football homecoming ceremony. They knew she had issues with lots of attention, but they said, ‘We’d love for her to be a part of this. If that means you have to walk onto the field with her, then that’s fine. If she decides at the last minute not to go out there, that’s fine. But she’s the one we want to help us.’ The lack of pressure, the belief that she could do something like that and the acceptance made it possible for her to beautifully break down major barriers that night, and it gave us such hope for the future.” — Erica Nash
20. “My friend’s husband would notice my son off by himself if we were at a lake or park with the other kids. He always made a point to include him or adapt a game the kids were playing so my son felt like he was just as good at things as the other kids. Nine years later, they still have an unspoken bond, even though they barely see each other. My son is a teenager now, so they just give each other a wink and a nod when they see each other.” — Larisa Wood
21. “The leaders in the children’s class at church didn’t bat an eye when my son with autism did somersaults over and over during music time. They even cleared a section of the room so he had a safe place to stim. When the other children asked why he did that, the leaders explained his brain works differently and the only way he could sing was by moving and doing somersaults. Since the adults didn’t make a fuss over it, the kids didn’t either. It was just a normal thing to experience.” — Jenn Kilstrom
22. “My son started playing Auskick football, and he was having a lot of trouble joining in. He would get angry, have meltdowns and run off. One day, another little boy talked to my son and showed him how to kick a ball. Ever since that day, my son loves Auskick. I am so thankful for that little boy.” — Lee-Ann Mitchell
23. “My child has an intellectual disability. A young man in our apartment building, who has a physical disability and is in a wheelchair, showed him how he could operate the brakes in his car with his hands. Just because he was asked. It meant a lot.” — Melody Nance
24. “My oldest son was in a wedding for a family friend. His friends have always treated my youngest son, who has autism, just like one of the guys. At this wedding, there was a girl in the wedding party we’d never met before. [My youngest son] loves music, so he always stands closest to the speakers and dances like nobody’s business. Well, this girl in the wedding party had been watching him all night (stares are not unusual, we just ignore them). Long story short, she came up and asked if I thought it would be OK if she asked him to dance. Of course I said yes. The look on his face when a girl asked him to dance was priceless. One of the best moments of his life.” — Lisa Mabry
*Some responses have been shortened and/or edited.