I remember exactly where I was the day “it” happened — the first time someone referred to me as a “special needs mom.” I had just walked over to a group of women who were chatting in a semi-circle when one of them casually introduced me to the others. “This is Ali,” she said, “She’s a special needs mom.”
I paused for a moment. My chest tightened. I forced a smile.
Maybe it was the easy way her words seemed to float out into the air around me, or maybe it was the way in which her simple phrase seemed to fill every empty space in that semi-circle. Maybe it was the lack of reaction from the others, or maybe it was the simple fact that hearing those words connected with my name — for the first time — was something I hadn’t prepared myself for.
An uneasy feeling settled in my stomach. I never had envisioned that parenting a child with special needs would define me in the minds of others. There was a lot more to me than being a “special needs mom.” For example, I’m an Aquarius, I like Thai food, I enjoy shopping for sunglasses, I can’t catch a ball to save my life, I hate the way suede feels and I love a good show tune.
I walked away from that experience confused. I wanted to hate what she said, and yet, another part of me desperately clung to her words. As much as I detested the phrase “special needs mom,” I surprisingly found some comfort in it. For the first time since my daughter was born with hypotonia, I almost felt a sense of belonging.
Maybe I had finally found people who could understand me — people who understood the struggle of shopping for shoes that can fit over braces, people who shared my frustrations about wait times for neurology appointments, people who could celebrate with me the “inchstones” in our lives. Maybe I had finally found my “village.”
Slowly, I became accustomed to the introduction, to the conversation, to the title — to being a “special needs mom.”
But that all changed the day a woman insinuated I didn’t belong in the special needs community. “Well, your kid has some struggles,” she stated, “but all kids do. At least your kid walks and talks. She doesn’t really have special needs.”
I didn’t know if her words were meant to be encouraging or exclusionary. My mind raced — almost as fast as my heart — but all words escaped me.
Despite her hypotonia, my daughter functions well in many environments. But her hypotonia is still there. It’s hidden deep inside her muscles, causing her to have trouble walking up and down the steps or keeping up with her peers. It’s the reason she was delayed in all of her gross motor milestones. It’s why her fine motor skills are still a year behind her actual age.
Just because her hypotonia isn’t always readily visible to the untrained eye, it doesn’t mean her hypotonia isn’t there. But does the invisibility of her disability mean we don’t belong? Does the fact her disability is mild in comparison to some children mean that she doesn’t have special needs in other people’s eyes?
I pondered these questions and many more, and I came to one conclusion: Maybe I really don’t belong in just one specific mom circle.
I am a mom in the middle.
A mom of a child without a diagnosis but with delays. A mom with many worries and with little answers. A mom who feared her child may never walk, but who now chases her child in the backyard, through the grocery store and around the house, especially at bedtime. A mom who spends her days at the park playground and her evenings at physical therapy sessions. A mom of a child who appears typical to some and anything but typical to others.
I exist in a sort of limbo — between two worlds, both of which meet my needs and yet, could never really understand what I experience.
I am a mom in the middle, and I know there are other moms like me. Moms who are searching for their place in the murky waters that exist between the typically developing world and the special needs community. Moms who are trying to figure out just where they fit in.
To other moms in the middle, on days when you feel lost, when you think no one really understands what you’re experiencing, when you are left questioning where exactly you belong, please know this: You are not alone. I will always have a spot right by me for you — right in the middle — and everyone is welcome here.
Article originally posted on The Mighty
Having a sibling with special needs is a reality many children are born into, including my three typically developing children. Of all the things my children experience that I never did, their experience of growing up with a sister with significant disabilities is something I struggle to understand, even as I watch it unfold daily.
The advantages to having a brother or sister with special needs are numerous and include being more empathetic, more responsible and more resilient. However, these typically developing siblings also shoulder tremendous burdens that are not often or easily discussed.
Documentary filmmaker Rachel Feichter has a typically developing 11-year-old and a 7-year-old, Talia, who has special needs as a result of a neurological autoimmune disease, Hashimoto’s encephalitis. Feichter discovered that there is a lack of information regarding the full experience of having a sibling with special needs when she searched for information to help her older daughter. She wanted to better understand the needs of her typically developing daughter, as well as help her daughter connect with other siblings with the same struggles, so Feichter began interviewing siblings of individuals with special needs for her in-progress documentary, which has the working title “Not Typical.”
While every sibling — and every family — is different, Feichter found some common experiences, many of which my children are having.
Feeling like they need to be perfect. Siblings of individuals with special needs know how hard their parents work to ensure all of their sibling’s needs are met, and often see their parents struggle to meet these needs. Many feel like they can’t make mistakes because that would add to their parents’ burden, so they believe they must be perfect at all times. This is an impossible standard to meet, and can lead to stress and feelings of inadequacy. One girl said she felt like she “had to be Ms. Perfect and not have any problems for [her] parents to deal with.” Another said that she felt as though she could never be “enough.”
Feeling like they can’t express their feelings. Most typically developing children love their sibling with special needs. Yet they may also resent how much of their parents’ time is taken up by caring for their sibling or feel embarrassed about their sibling’s behavior. One girl said she “was never allowed to mourn openly or to be mad or sad about [her] brother” and another said her friends thought she was being mean if she said anything bad about her sister, even though friends with typically developing siblings often complain.
Having a different idea of family and home. For most children the concept of family is based in togetherness. But when a sibling has special needs, family quality time may look different. One girl recalled that her mother was “assigned” to her sister with special needs and her father was “assigned” to her. The family often spent time apart, especially when it involved leaving the house. In many families, the sibling with special needs may not be able to attend certain events or go certain places for a variety of reasons, including therapy and medical appointments, physical barriers to access, or sensory issues. In some cases, the presence of caregivers and therapists may redefine what a family home is for children. In my home, for example, our child with special needs is normally fed by a personal care attendant. A therapist is often present at our family meals as well. Nonfamily members are typically also present even during lazy weekends at home. Some siblings said that places outside the home, such as school or a relative’s house, are more of a refuge for them than their home.
Feeling as though their problems are minimized. Sometimes a sibling with special needs has complex and even life-threatening problems. An issue faced by a typically developing sibling, whether it is a problem with a friend or an academic struggle, may seem small compared to having limited mobility, learning difficulties or sensory issues that require intensive care or prevent a child from attending the neighborhood school. One girl said her parents rarely dealt with her problems, instead telling her to be “strong.” Another felt her parents never took her problems seriously because they considered her the “lucky one” for not having a disability.
Feeling isolated. Typically developing siblings may be lonely because they don’t have peers who have siblings with special needs. So they feel different when their friends ask “what’s wrong with your sister?” Some children also feel self-conscious about their sibling with special needs, and aren’t sure when or how to tell their friends about him. Others feel uncomfortable inviting friends over because they are unsure of how their friend or sibling will react.
Dealing with intolerance early and often. Children learn early that there is not universal acceptance for individuals with special needs, and that their sibling is not welcome everywhere that typically developing children are. This can be deeply disappointing to typically developing children who want to have shared experiences with their sibling. They regularly encounter individuals who refuse to move from seats designated for individuals with disabilities, and those who make unkind comments about other accommodations their sister needs. These early lessons in intolerance, and even hate, can affect their world view and make them cynical or resentful of the limitations placed on their sibling and themselves as a result.
Feeling like they are asked to help too much. Some typically developing children are expected to help care for their sibling with special needs from a young age, even if that sibling is older. One girl said that she felt like the “attention police” at home since her mother was constantly telling her that she had to pay attention to her sibling with special needs. Others are expected to push wheelchairs, participate in therapy sessions, or attend to their sibling’s personal care needs by feeding them or helping to get them dressed. Many are told early on that they will be expected to care for their sibling when their parents are no longer able to do so. This puts enormous pressure on them.
Feeling like they must grow up quickly. Because of the sum of their experiences, from feeling as though they are on their own to handle their problems to feeling pressure to be perfect to being given responsibility for their brother or sister, some siblings of children with special needs feel as though they are forced to grow up too quickly.
Most typically developing children love their siblings with special needs beyond measure and are close to them. But to better understand and support them, it’s important to acknowledge their struggles. There is a need for more information about the experience of growing up with a sibling with special needs. While there are a few places the stories of these siblings are told, such as the fictional book “Wonder” by R.J. Palacio, hearing from the siblings themselves in “Not Typical” will help many feel less alone and better understood.
Jamie Davis Smith is a Washington-based mother of four. She can be reached at firstname.lastname@example.org. Follow her on Facebook and Twitter @jamiedavissmith.
I don’t remember having to be told that my brother was disabled, but I have to break it to other people all the time.
When people ask if I have any brothers or sisters, I tell them I have a brother. They ask how old he is, and I say he’s my twin. This immediately gets them excited. They want to know if we went to the same school, if we look the same, if we can communicate telepathically. I feel like I’ve made the conversation awkward when I tell people that he’s severely disabled. (I wish there was a better word for “really disabled” than “severely”.) Teachers go quiet and walk away, casual friends apologise as if it’s their fault, and people look embarrassed to have asked in the first place, as if I’ve confessed a deeply personal family tragedy.
The best kind of person asks lots of questions. They’re insatiably curious. Their desire to know more outweighs any embarrassment. I know if the situation was reversed I would be too shy to be this kind of person, but they’re brilliant because they keep the conversation going. I’m normally a little bit intimidated by extremely confident people, but not when they’re brave enough to ask me about my brother.
His name is Jack, and we were born 11 weeks early. Jack weighed 3 pounds 2 ounces and I weighed 2 pounds 10 ounces. A few days after we were born, Jack had a brain haemorrhage. He was left with cerebral palsy, hydrocephalus (water on the brain), and epilepsy. He can’t walk, talk, or interpret images that he sees.
While I’m aware that finding all this out must have been awful for my parents, I don’t remember any of it. I’ve never known anything different. We’ve always had a disabled parking space outside our house, always jumped to the front of airport queues, and always had silly family traditions to keep Jack entertained.
When he was little, Jack would scream when the car stopped at a red light, so we would chant “Red light Jack! Red light Jack!” until he laughed. Right before he’s about to cry, he sticks his bottom lip out for at least a minute, giving us time to sing the “Put that lip away, Jack” song. During mealtimes we have quizzes or play alphabetical word games so he doesn’t get bored. Relatives and friends who come to visit are swept up into it. One minute someone is a total stranger to the house, the next they’re trying to come up with a fictional character beginning with Q. I think it’s safe to say that our interactions with guests would be a lot more boring if we didn’t have Jack. We’ve always had a disabled parking space outside our house, always jumped to the front of airport queues, and always had silly family traditions to keep Jack entertained.
As a child I read a couple of books from the point of view of children with disabled siblings. Neither of them reflected my experience. In one, the disabled little brother died at the age of 2. Obviously this happens, and it could have easily happened to me. The only part that didn’t ring true was the main character’s school friends, who immediately made fun of her brother when they found out he had been born with impairments. I don’t know if times have changed since 1988, when the book was published, but since 1992 my childhood friends have been, at best, kind to Jack and, at worst, indifferent.
In another book, the main character was embarrassed to invite friends over to her house because she didn’t want them to meet her disabled sister. This didn’t seem right either. The disabled sister was older, so the main character could never have known anything different. Nearly all of my friends met Jack so long ago that I don’t remember it, and by the time I introduced my university friends to him I knew everyone was an adult and would be mature about it.
None of this is to say that I had no negative childhood experiences because of Jack. I was often jealous when I saw friends playing with their brothers or sisters. When I was 10, I kicked a friend at a sleepover after watching her kick her little sister in the face, because I couldn’t understand how anybody lucky enough to have a nondisabled sibling would want to hurt them like that. I know better now. I’ve never had the same reasons to fight with Jack; we’ve never had to vie for our parents’ attention, never had to argue over whose turn it was to use the internet when we only had dial-up, never fought over possessions or who got the best GCSE results. Jack is not comparable to me as we cannot be measured on the same scale. I’m confident that our parents love us equally (or at least, that’s what my mum said when I asked her). My achievements are not his shortcomings.
I’ve been lucky. When Jack has become dangerously ill, so ill that he could have died, I was either so young that I had no idea what was going on, or so young that I was deliberately kept in the dark. The shunt in his head that drains out the brain fluid has blocked twice: once when we were 3 (I have a vague memory of knowing Jack was “poorly”) and once when we were 13. At 13 I knew the medical situation, I knew that he was in and out of hospital. But nobody told me he could have died. Looking back at my diary from the time, it’s pretty horrifying how quickly I jump from a casual mention of Jack’s hospitalisation to a lengthy paragraph about someone saying something mean to me at school. I didn’t find out how much danger he was in until afterwards, when he was out of the woods. They didn’t want to worry me.
The greatest emotional distress Jack has ever caused me is worrying that I’m not worried enough, which is a luxury problem. Jack is fine. He lives in a house with four other young disabled people, and 24-hour care. The people who look after him are almost supernaturally lovely. For our birthday they arranged for four actual owls to visit his residential home and fly around landing on his knees. I would not be able to do what those professional carers do. Jack needs constant attention: He needs people to read to him, talk to him, feed him, change his clothes, wash him. As his sister, I’ve never done anything beyond what I would consider to be the normal sibling call of duty. I’ve not done anything shower- or toilet-related, apart from when we were so young we would share a bath. I’ve never fed him more than a mouthful. The most I do is read to him and sing to him, which I see as the equivalent of the conversations we would have if he wasn’t disabled. And really, I benefit from this too. He’s the only person who appreciates my out-of-tune rendition of every song from The Sound of Music.
Jack is different from anyone else I’ve ever met; he remains the most purely good person I know.
The only thing I feel that I miss out on is the twin-ness. I’ve never spent much time around other twins, particularly not boy-girl twins, and I suppose if I did it would make me sad. There’s a whole parallel universe that I try not to think about where everyone knows Jack and me as “the twins”, where we went to the same school, where he’s friends with my friends, where we argue about things. I can’t fully imagine what Jack would be like if he wasn’t disabled. I don’t know what his political affiliations would be, or his annoying quirks, or what else might have surprised me had he grown up like everyone else.
As Jack is different from anyone else I’ve ever met, he remains the most purely good person I know. I sort of believe that everyone (including myself, and everyone I love) is a bit of an arsehole. Jack can be irritating. He shouts, he’s grumpy, he won’t be satisfied with any song on his iPod or any book you read to him, but he doesn’t have the intellectual and emotional capacity to be mean.
It’s not a good thing that Jack’s disabled, but it feels like the sad bit happened a long time ago. I was born two minutes after him, so I didn’t have the opportunity to build up alternative expectations. I missed out on all the regular twin stuff, although sharing a birthday is still pretty great, but I know that if it wasn’t for Jack I would be too shy to be comfortable in the presence of other disabled people. I flinch at the word “spastic” in a way I might not do otherwise.
Although I don’t always see Jack’s disability, this doesn’t mean that I don’t see any disability. I’ve got more used to other disabled people now, but when I was younger and would go to Jack’s school with my mum to pick him up I would see a crowd of people with unfathomable impairments, and Jack would look like the odd one out.
So when I tell people I have a disabled twin brother and they’re uncomfortable, I feel like I’ve misled them. What I really have is Jack, my twin, who happens to be disabled. He’s not a sob story, he’s just Jack.
Written by: Anne Suslak BuzzFeed Contributor
Rebecca is an independent publisher working to help siblings of children with emotional challenges.