Saturday, October 15, 2011

The “Special” Lives of Siblings

Chloe held a fat preschool pencil in one hand and a notebook in the other. "Mommy, I have to make a list in my 'Handy-Dandy Notebook!'" she exclaimed. (That's a term from Blue's Clues in case you didn't know.) She can write the letters by herself, she just needs me to spell the words for her.

"Mommy, how do you write the word 'therapy'?"

That's right. My five year old asked me to spell the word "therapy." I spelled it, and she wrote it neatly in her tiny spiral-bound notebook.

Chloe just turned five in September. A few weeks ago, she drew a very detailed picture and presented it to me. "It's Lilli having therapy! See, that's Lilli and that's the potty, and that's the tv and the movies, and that's the therapist saying, "Yay Lilli!" I stared at it, speechless.

When Chloe was three she once drew a picture and held it out to me proudly. "Look, Mommy, I drew Diastat!"

Diastat is Lilli's emergency seizure medication that comes in a plastic box that we carry with us everywhere we go. What three year old draws a picture of seizure medication?

She actually has asked me on multiple occasions, "Mommy, do you have the Diastat? Don't forget it!" She has only seen Lilli have a few seizures. We have tried to shelter her from that because it is scary. One time I was alone and I needed her help while Lilli was having one. After that she started to pray, "God please don't let me have a seizure," in her bedtime prayers and I had to explain that not everybody has seizures.

What a "different" kind of life a sibling of a child with special needs lives. It's not necessarily bad. There are a lot of great learning experiences and opportunities for discussion about differences and helping others. In the past, people have commented to me, "Wow, Chloe is going to grow up with a wonderful sense of compassion and awareness for others' needs. She will have a depth to her that most kids do not have because of Lilli's disabilities." I pray that is true for both of Lilli's siblings, Josh and Chloe. I think anyone could list positive character qualities that a sibling might have instilled in them as they grow. I am not sure I can eloquently sum up this difference. I have actually been writing and changing this particular post for over a month. I have found it very difficult to be succinct because there are so many facets to the sibling's situation. Siblings of children with special needs do have a very different home life experience than children who don't have a sibling with special needs. I am just going to highlight several issues we have experienced personally:

  1. Siblings can pick up undesirable behaviors from their siblings who have special needs.
  2. Siblings are often asked to be responsible for tasks that a "typical" child is not asked to do, simply because the parent needs an extra set of hands.
  3. Siblings often miss out on experiences or activities because of the health, behavior of their special needs sibling, or handicap inaccessibility, or simply lack of childcare or help.
  4. Siblings often endure countless hours in waiting rooms of doctor's offices and therapy clinics.
  5. Siblings sometimes have their wants or needs pushed to the "bottom of the list" because the child with special needs' needs are greater.
  6. Siblings sometimes feel ignored by their parents because their parents are so focused on medical issues, therapy, etc.
I never want Josh and Chloe to feel slighted because their sister's special needs demand so much from all of us. But unfortunately it does happen to siblings in family situations like ours. This subject is on my mind constantly. I honestly ponder it and make decisions based on it every single day. It is by far one of my biggest challenges as a mom.

Picking up undesirable behaviors is at the forefront of my mind right now because I am seeing it every day. Lilli, being the oldest child, is the role model. It is just natural for Josh and Chloe to watch Lilli and see what she does, and see our response to her behaviors. It is a tricky thing to handle as a parent. A few nights ago, 19 month old Josh came over to me and grabbed my hand. He pulled on it until I got up from my chair. He then proceeded to drag me to the television, look at it, and make a "M-M-M" sound by clapping his hand over his mouth. Oh my goodness, that was a total "Lilli move." He also grabbed my hand and pulled me to the cabinet to ask me for a cheesepuff. Anyone who has ever been to my house even once has been pulled to this cabinet by Lilli for a cheesepuff. It has been a hard habit to break and she is getting strong.

Josh watches her all day and copies her. Some things are good. He is learning sign language. But overall, it is not really a great thing. I don't want him to watch her struggle to use a fork to eat, I don't want him to see how she still needs help getting dressed and makes no attempt to bathe herself or use the potty. I don't want him to observe how she drags people to things she wants and whines when she can't communicate. Why? Because he copies her. And we are fortunate. Think of the families who have children that hit themselves, bang their heads on the floor, or run away. What do those siblings think and copy?

In the past two years that Chloe has gone to preschool, I found myself explaining to the teachers that Chloe had a special needs sibling as a role model, and she desperately needed to be around other "typically developing" kids. Lilli ignored Chloe and never acknowledged her, let alone play with her. Chloe didn't know how to eat like a normal kid. She watched us spoon feed Lilli puree food all day long for years. The light bulb went on for her when I sent her to a friend's house and she ate snacks and chatted with other girls her age for a few weeks. After that, her language skills took off and she began to eat better. It is not like an only child who has no other children to watch. It is the fact that Chloe and Josh watch Lilli and copy her, and then we have to try and undo that and re-teach them the correct ways to act. At age three and four, it was difficult to explain to Chloe why Lilli is different, and that she was not allowed to act like that. Now that she is five we have had several talks about Lilli's differences. Chloe is starting to get it. But it is still tough.

Some things are just downright unfair.

I can think of dozens of examples that occur each day, and it hurts my heart to think about it.

Chloe finally realized that Lilli "gets" to sleep in our room with us because of her seizures, while she has to sleep in her own room across the hall.

We go to the library and Lilli starts to wail. I pressure Chloe and whisper urgently, "Hurry UP! Pick out a movie and let's GO 'cause your sister is losing it!"

The living room is a wreck from all three kids, and Chloe is the only one who cleans it up. Lilli won't or can't clean it up, depending on whether you look at her cerebral palsy or her autism, and Josh is too little to really help much. We are trying to teach him, but dropping a few Legos into a container is nothing compared to what Chloe does. It is just not fair and I know this.

I have taken all three of them places and asked Chloe to push Josh in his stroller so that I can push Lilli. Oh my goodness she is barely five. I actually have to depend on a five year old for help, every day. She holds doors open for me while I push Josh's stroller with one hand and guide Lilli with the other.

Chloe asks me if we can go certain places, do certain things. A lot of decisions depend on Lilli. I have too many examples to list.

Guilt? Yeah, I've got it.

We have missed many events because Lilli can't handle certain situations. We have left things early because of Lilli's meltdowns. I almost did not sign Chloe up for dance class because I could not figure out what I would do about Lilli. A few weeks ago I took Chloe to her first dance class. I sat in the second-story hall of the old house and waited while she and a dozen other little girls tapped loudly on hard wood floors and music blared from rooms around us. While I should have been excited that her little four year old dream of dancing was coming true, I hung my head and thought (loudly), "What am I doing? Why did I ever think I could do this?" I was worrying about the possibility that one day I might have to drag Lilli and Josh with us to dance in the event that my husband does not make it home early to watch them. I know Lilli would have a melt-down because of the noise.

The dysfunction of a mom of a special needs child. I think that I can't do things because of Lilli. Tragically, it sometimes keeps me from doing things for my other kids.

So how can others outside the home help?

Here are a few ways:

  1. Ask the parents if you can invite their child to go with you to special events that the family would not typically attempt because of the child's special needs. For example, many kids with autism do not do well at the movie theater or ball games because of the overwhelming sensory experience. Can you believe that Chloe has never been to the movies? (Guilt!) Restaurants are a challenge for many reasons. Plays, concerts, the circus, most of these would be a case that we could not go as a whole family.
  2. Offer to babysit the child with special needs so that both parents can take the siblings somewhere. A parent would be eternally grateful for the opportunity to take the other children somewhere they normally would not be able to go.
  3. Pay special attention to the siblings and their accomplishments. Sometimes parents of kids with special needs are so wrapped up in the world of medicine, hospitals, feeding tubes, therapy and doctor appointments, or they are just plain sleep deprived, they have little energy left to focus on the things that are important to the siblings. Sometimes a parent has to miss big things. Jasen and I take turns a lot, but even that is hard. Jasen missed Chloe's Christmas play last year. Currently we are arguing over who gets to take Chloe to see the Nutcracker this year. I took her last year. We hope we can get the nurse to work so we can both go.
Many people have helped us in countless ways. I could write an endless list of how people have helped us personally with the "sibling" issues so far. I deeply appreciate when others help give attention to Josh and Chloe when I cannot. I hope this post inspires someone, somewhere to think of the siblings of a child with special needs, and their unique situation. Most of the time the focus is on the child with special needs. But the siblings of these children have special needs too.

Some links with helpful articles & ideas about this subject:

Check out this organization:

A wonderful blog written by a mom of a child with special needs with tons of resources. Wow, this blog is a million times more informative than mine. She also has many great links to other resources about this subject. Highly recommended. Check it out:

Article: Group offers support to siblings of special-needs children


Tuesday, October 4, 2011

Why the Word “Retard” Hurts

Everyone says it, right? I used to say it. But after you have a child like Lilli, well, you don't say it anymore. It would be like joking about getting cancer to someone going through chemo. You just…don't.

I want to make it clear that this particular post is not "aimed" at anyone. I have no hard feelings at all. This word is so prevalent that I am not writing about it for a specific person to read and think I am talking about "them." I write this blog with concern and thoughtfulness for others, to help and educate, and to give people a window into the world of what it's like to be a mom of a kid with special needs. I hope anyone who reads it is encouraged in some way.

This is old news, isn't it? Come on, everyone knows they should not use the word "retard," don't they? Well, unfortunately, it's one of those words people still use when joking around. I guess I thought it was worth my time to help others understand, even after all of this time, that yes, this word is still around. I even hear it from friends and family.

I spent time recently with a new acquaintance, a friend of a friend. She was super sweet and I liked her instantly. We both babbled on about "mom stuff." And then she said the phrase "I hope people don't think I'm retarded!" A few minutes later she said, "I feel like a retard!"

I winced a little bit but ignored it.

Moments later, her husband walked over and said something about looking like a "retard." Yikes. I really, really like these wonderful people. I wasn't offended, I just was not sure they knew that "retard" is a hurtful, recently outdated term. They know about Lilli. I guess they just did not make the connection. I just wish I could tell them that they might want to consider dropping that word from their vocabulary, because it's painful to others. I know they just had no idea.

I want to try and explain how it affects me personally. I can't speak for other parents of kids with special needs, but I think it's a pretty safe bet that there are others out there like me. To give an analogy of how it feels, I can only think to compare this to other experiences I have had with personally painful words in the past.

When I was 13 my mom died after battling 5 years with cancer. I was in a world of hurt, and for years whenever anyone said the word "cancer" or "died" or even the word "mom," I jumped a little. It was like it physically hurt to hear those words. I was so sensitive to death back then, I could not stand it when people joked and said "Oh I almost died laughing!" or "I was about to die of embarrassment." Simply because it hurt to hear the word "die." Whenever I heard the word "mom," I would instantly feel hurt in my heart, because I didn't have a mom anymore. It took years for those words to not sting me, but now they don't. Now, I certainly did not expect anyone to stop using the words "die" or "mom" around me. I am just explaining that I had a reaction when they said those words because of my personal experience. I have a similar but more muted reaction when I hear the word "retard." But it is in a different category. That word is not necessary for everyday conversation. There is a difference.

I gave that analogy so that you might understand why a person who has a loved one with special needs might be upset when you use the word "retard." It is a loaded word. It makes no sense to use it when joking around. Doesn't everyone have these words with personal meaning that sit like waiting water balloons? You're having a normal conversation with someone, and they use a normal, everyday word, only that particular word has all kinds of baggage attached to it for you. All of the sudden, BANG! You're hit with it. But you go on with the conversation and shrug it off. Think of words that sting you personally…only for a second maybe, but you still have to mentally shake it off and move on. Racial slurs. Maybe words about crime, such as rape, shot, killed, drugs, prison. Perhaps words about health: Cancer. Heart disease. Surgery. Terminal illness. Maybe words like: Divorced. Widowed. Cheated. Sued. Lied. Robbed. Foreclosure. Unemployed.

I am assuming everyone has a word or two like this. Whatever traumatic thing has happened to you, those words related to that trauma have some degree of hurt dangling from them. Words change too, over time. I can hear the word "mom" and not jump now. Heck, I hear the word "mom" all day long from Chloe and it makes me yell "HANG ON A SECOND!!!" So thankfully our hearts can heal over time.

In the NICU at Lilli's birth, doctors told Jasen, "Your daughter has brain damage." "Well, what does that mean?" Jasen asked. "It means she will never walk or talk and she will need help all her life." I would venture to say those were probably the most life-changing, drop-a-bomb-on-you words Jasen has ever heard. I was not there to be hit with that, I was recovering on another hospital floor. Jasen tried to soften the blow when he told me later, but how do you soften the words "brain damage?" Years later, in a school meeting about Lilli in Virginia, an "autism expert" made a joke before the meeting began. There was a broken chair at the conference table. He said, "Oh, I'd better not sit in that chair, I might fall and hit my head and get brain damage!" Everyone laughed except Jasen and me. Um, did the guy realize that there were two parents sitting at the table, who had a child with…brain damage? What a terrible way to start out a meeting about Lilli. I never forgot that.

As for the word "retard…"

Doctors are not supposed to use that word anymore, it's out-dated. Newer doctors use the term "cognitive delay" or "mentally challenged." That's the PC term. But just a few short years ago when Lilli was born, everyone was still saying "mentally retarded" to us. I can think of 6 different specialists off the top of my head in those first few years who tossed the term "retarded" around when we took Lilli to figure out what was going on with her. Only it didn't feel like a water balloon when they said it. It felt more like a ticking bomb being casually thrown around the room. I remember when one specialist told me Lilli had cerebral palsy. She was 12 months old. He got all quiet, sat down in front of me and handed me a pamphlet while slowly telling me "Lilli has something we call….cerebral palsy." He explained it to me while an intern stood awkwardly in the corner and I tried not to cry as the floor fell out from underneath me. When Lilli was about three, we spent a lot of time trying to figure out what was going on with her. Before she was diagnosed with autism, specialists speculated about different diagnoses. One doctor said, "I don't think she has autism. I think she is just mentally retarded."

See. We parents of special kids hear that term in a not so funny way. I am sure there are still a ton of old school doctors who say it to patients.

Parents of kids with special needs still hear the term "retarded" all of the time from the government, too. There is something called an "MR waiver" – MR stands for "mentally retarded." Pretty much all kids with some kind of mental diagnosis qualify for it. The waiting list in South Carolina is in the thousands. These are all kids waiting for the state to qualify them for benefits. Having the MR waiver helps pay for medical equipment, adult sized diapers, formula for tube-fed kids, etc. Being on the waiting list means you have to pay for it all yourself until maybe you might reach the top in about 5 to 10 years. In the meantime, your kid is on the MR - Mentally Retarded - waiting list. Lilli is on it.

Different words have hurtful meanings for different people. And for us, the word "retard" stings a little every time we hear it. I can't help it. Friends and family who love us and love Lilli will joke and use the word "retard," and sometimes I will have a split second irrational thought: "That person doesn't love Lilli. They don't love me. If they loved us they would be sensitive and not say that word." I KNOW that is so ridiculous! But that is how much it hurts. You might read this and think, "It's just a word. It has no meaning. I don't mean it like that when I say it. I'm just joking around."

I am sure you are joking. But it still hurts.