What Defines Us

I once had someone ask me if we didn't, perhaps, identify too much as the family of a child with special needs?  I remember feeling bewildered. I didn't answer.   How could I answer?   How was I supposed to answer?  I wondered what our life looked like from the outside.  However that was, it probably didn't accurately reflect our reality anyway.   There's a reason parents of kids with special needs tend to hang out together.  Nobody needs to explain anything.  How could we not identify ourselves as the family of a child with special needs?  How on earth would it be possible to do less of it?

We try very, very hard to do things with M. on his own and encourage his own interests.  Sometimes our efforts are more successful than others.  We don't expect him to be responsible for his brother too much in the short term, and while we hope he will want to in the long term, that's not something we dictate to him. (Though I will freely admit that any significant other he brings home will be scrutinized, especially how they interact with P.)  But doesn't his brother's existence, his very twin-hood, define M. to a certain extent?  In the same way that my having nine siblings defines me and my husband's strong Italian heritage defines him, the way we grow up shapes the people we are. To what extent do we define ourselves and to what extent is that definition thrust upon us, either by circumstance or accident or luck?

P. has spent the last 10 days at a local camp that serves children with special needs and those who are economically disadvantaged.  Amazingly, this is his 5th year attending.  That's hard to believe when I think of how we chickened out and decided not to send him at the eleventh hour the first year he was eligible to go. We only agreed to let him go the following year because our amazing friend K. volunteered for the week and was able to send us daily reports.  I remember being amazed at the "veteran" parents who threw a sheet on the bed, kissed their kid on the cheek and left.  They just... left.  We stayed far longer than we should have that first drop-off and M. begged to stay because "who will take care of P?"  For that entire week we didn't dare move very far from the phone in case he was miserable and needed to be picked up right away.  We talked about him constantly.  The second, third and fourth years he attended, P. jumped out of the car when we got to camp.  We felt more comfortable leaving him, though we still cried on the way home.  Still, we ventured farther afield with M. and were able to stop worrying for longer and longer periods of time.

This year P. was excited to go, he started bouncing in his seat when he recognized the road.  But he didn't leap out of the car.  He treated it more like home.  He waved hello to everyone, strolled into his cabin and picked out his bed (top bunk, of course).  After we put the sheet on his mattress, he shooed us away.  He climbed up and set it all up himself -- pillows and blanket and Barney and Blue and Woody and Buzz and water cup just the way and where he wanted them.  When it was time for us to go, he didn't cling even a little bit.  I was happy about it in the moment.  "Look how mature he's getting!" We were different as well. We knew he was in good hands and that he would have a lot of fun. We chatted to the counselors we knew.  But instead of instructions about P. we asked how their year had gone and what were they doing now?  The walk to the car was easier and we didn't cry.  M. had a camp the same day and we had to get him where he needed to be on time. We couldn't dally. It seemed we had matured as well. We had become the parents I marveled at the first year.  We just... left.

Without having to get up for summer school, we all indulged our night owl tendencies and slept in later.  It was very quiet. I felt more successful in my attempts to meditate.  We spent all day gardening or at museums or fossil hunting or visiting Toronto.  We even saw a movie that wasn't animated.  We ate out at restaurants without caring whether pasta was on the menu.  We shopped for furniture without worrying about whose patience was waning.  There were no complicated vitamin regimes to prepare (and consequently, none of us took our vitamins either).  My husband and I each went to events without in-depth discussions of schedules. We didn't think about therapies. I went to work and didn't panic about being home in time for the bus.. No one's bowels were the topic of conversation. No one needed their meat cut or help getting their teeth brushed. I didn't have to translate anyone's communications.  I almost never had to look at someone's clothes before they left the house to make sure everything was on right. We were able to take long showers without making sure someone else was watching to be sure P. didn't wander outside in his underwear or decide to sit in the hot car or eat the entire contents of the cold cut drawer or try to turn on the stove or drape the waiting laundry over the furnace and hot water heater.

That's not to say we didn't miss him.  Of course we did!  When it rained, we worried he wouldn't be able to swim.  And when it was sunny, we worried he was giving the counselors a hard time getting out of the pool.  We hadn't sent as much food with him this year, was he eating most of what they served?  In the past he has gone to the Christmas in July session -- was he wondering where the tree and the decorations were?  Perhaps there was a theme for this session that we should have known about and talked up.  I noticed that M. was sleeping in his brother's bed.  He didn't want to do some of the things we suggested because he wanted P. to do them too.  He invented a new game that he couldn't wait to show his brother how to play. The large hole in the day was more than just P.'s absence.  I found myself constantly analyzing thoughts and emotions. What exactly was different this time?  And why was it different?

And then as we were in the kitchen last night, making P.'s favorite pasta salad for his welcome home meal and talking about what time we had to leave this morning, my husband hit the nail on the head.  "This week has been too easy.  It feels wrong somehow."  With just M. to worry about, everything was easy.  Had we been experiencing life as a "typical" family?  Is this what family life feels like for most people?   That's not good or bad, just something we have never experienced. It felt like we were coasting through life. If we had this existence all the time, we might forget to be grateful. We might forget to strive for someone other than ourselves. We might forget to be cheerleaders. We might forget to be who we are.

As I am typing this, the television is blaring, and the rhythm of lots of little figures being dumped out of their bucket and put back in resounds through the house.  I've had to negotiate snacks and supervise wiping and cut up meat.  At least ten times, I have said "Leave your brother alone!"  I've packed the backpack for school tomorrow and made sure the speech device is charged and that we have lunch supplies ready.  I have washed all the bedding so that Barney and Blue and Buzz and Woody can go back to their normal places.  The vitamins are laid out.  Everyone is where they should be and everything is once again as it should be in our world.  And to my mixed feelings of gladness and regret, P. has signed "more" and said "more camp" and "go camp" several times since we arrived home.  He is trying to get used to the normal routine again too.

This year, camp gave us a taste of what life might be like when M. and P. don't need us on a daily basis. Children grow up and move on and parents learn to redefine themselves in the wake of those milestones. We expect our typical children to do that.  We're proud of them when they do.  But our children with special needs?  We set up trusts and we arrange for guardianship and we put them on a waiting list for an independent living situation when they're 11 because those lists are so very long.  We never talk about our fears that it might never happen. And maybe if we're totally honest, we're equally afraid that it will.  And yet our children mature and grow just as others do.  They become more independent in their own ways and eventually they begin to build a life away from us, even if only an internal one.  Even if it is inch by inch over a long period of time.  Sometimes it begins with the return to a place they feel at home in, with people they feel safe with.  And we have to let them do it.  Even when it's hard.  Especially when it's hardest on us.

I am the parent of a child with special needs.  That role does define me. I am the parent of a typical child. I am the parent of twins.  Those roles define me as well. But now, maybe, as time goes on... I see that other things, some long-forgotten, and some new, can define me as well.  And I will need to sit in the noise with these thoughts until I become used to them.

We Need to Talk About This Again?! Stop. Using. The. R-Word.

Ann Coulter's recent uses of the r-word have been in all the mainstream media, twitter users are retweeting, bloggers are posting... and I'm saddened that we still have to have this conversation.

Let's be very clear, using the r-word is hate speech.  It insults an entire group of people, many of whom are unable to speak up for themselves.  It is hate speech just the same way that the n-word is.  It's not acceptable anymore to use racial slurs or pejorative terms about a person's sexuality.  But somehow this one still hangs on.  Why?  John Franklin Stephens is fortunate enough to be a voice for his fellow Special Olympians and responded with An Open Letter to Ann Coulter.  He's also said this.

Maybe you know that my son Paul has Down syndrome.  He also has severe speech delay.  What he is able to express verbally or even with the help of an augmentative device is far far less than what is going on in his thoughts, his emotions, or his cognitive ability.  I know this because I see his frustration when I don't understand what he is telling me.  I see how he plays with his Disney character figures and know that he is telling amazing stories in his head about them (Scar and Cinderella having a picnic?) and I want to know the story too!  I also know, as every mother does, that he does not like being left out and he most certainly does not want to be made fun of.   And since he can't say it for himself, I am here to say it for him.  He'd like to be friends with everyone, even those who give him the side eye.

Our culture has become one of bullying and aggression.  There are campaigns against bullying and everyone is on board.  Absolutely.  Bullying is bad and should be eradicated.  Can you not see that using the r-word is also bullying?  Go back up there and read John Franklin Stephen's words again.

Does our country support free speech?  Yes.  Can Ann Coulter or you or anyone say whatever they like under the First Amendment?  Absolutely.  But that doesn't make hate speech acceptable.  And I am going to use my First Amendment rights to call you on it.

Every. Single. Time.

I Hide, You Seek

The other night P. wanted to play hide and seek before bed. "No way, " I told him, "it's already very late! Get in bed!" I turned around from putting clothes away, turning on the fan, confiscating the books, etc. and there he was under the covers. "I see you! I know you're under there!" M. cracked up laughing. "That's not him, Mom. He's in the bathroom." Sure enough, I go in the bathroom and there he is, laughing at me. You can trick Mommy sometimes!

This Morning I Came Downstairs

to find P. getting breakfast in bed ready. (M. who is usually the mastermind at shenanigans like this was still fast asleep.) He had the baking sheet we use for a tray out on the counter (I really need to buy a bonafide serving tray), a coffee cup with an inch of water in it and some leftover ravioli and a fork. Such a smile when I asked him if he was making breakfast in bed. He even got it off the counter and over to the stairs without spilling. Then he yelled "Help!" And when we got upstairs he climbed back in bed and ate it. Wouldn't share with us at all. Is this kid too much or what? The wheels are turning in there, P. I can see them turning...

R is for Respect

There are a lot of lovely words that begin with R: rain, radiant, read, reassure, recipe, reconcile, recycle, reflect, refuge, rejoice, relax, remember, rescue, resilience, reunion, reverie, revive, rhapsody, rhyme & romance.  

There are also a lot of ugly words that begin with R: racism, rage, rancid,  rat, reek, reject, renege, reprehensible, repress, repugnant,  revenge, ribald, ridicule, rigid, rotten, rubbish, rude & ruthless.

It's time to ban the ugliest R word from our vocabulary: retard.  

President Obama appeared on the Tonight Show this week and compared his bowling ability to the Special Olympics.  He apologized for the remark before the show aired and Special Olympics Chairman Timothy Shriver called it a teachable moment for the entire nation. Should the President have known better?  Sure.  Was he trying to be purposefully hurtful?  I don't think so (because those folks don't apologize).  Was he insensitive?  Sure. To me, it just shows how commonplace statements like this have become. The majority of people who use the word "retard" or "retarded" probably aren't even hearing the word when it comes out of their mouth, never mind connecting it to a real live person.  It's become a synonym for ignorant or doofus.  You hear this word every day, everywhere, from people of all ages. I'll admit that I used to say it when I was much younger and much much much stupider. I never gave a thought to what it really meant and I'm ashamed of that now.  It's a slur, plain and simple. And it hurts.  

It's also very inaccurate.  People with special needs are not retarded in their capacity and capability to love just like the rest of us. They are not retarded in their ability to learn, just like the rest of us.  They can function in the world and be productive members of their community, just like the rest of us.   However, people with intellectual disabilities and other special needs may not always be able to articulate their feelings. When they can't, it's up to us, the ones who love them, to say it.  It hurts everyone in our society when you use this word or otherwise treat them as 'less than.'  

From now on, let's use all the lovely R words more often.  Help eradicate one ugly one.  

Recognizing a Kindred Spirit

Last night we were at a Halloween party. Another of the guests was a 7-year-old boy with Down syndrome. P. ran by him, stopped, and came back. He looked up into the boy's eyes, smiled and patted him on the chest. The other little boy smiled back. Then they ran off in separate directions. Once, walking through a mall at Christmas time when the boys were toddlers, an adult man with Down syndrome gave P. that same kind of smile.

Witnessing exchanges like this remind me that some cultures believe that people with Down syndrome are the closest beings to angels here on earth. They recognize that in each other. I wish we all could.

The Little Things Are the Big Things

We realized the other day that life around here seems a lot easier and calmer. A lot of that is due to the fact that P. has shown a lot of progress since school started.

He is starting to tell us when he has to use the potty, often getting out of the bath or bed to go again before he goes to sleep. This week he kept his pants dry for a 40 hour stretch! And I don't really want to count the accident, since he was sitting on the potty at the time, he just forgot to take his pants off first.

If he needs medicine, he drinks it right out of the little cup, no more holding him and forcing it down with the little dropper.

This morning he insisted on eating his yogurt all by himself. This doesn't sound like a big deal unless you know that all his vitamins, ginko, fish oil, iodine and flaxseed are mixed in there. (Would you eat it on your own?) He can help himself to a snack or drink if he wants one, though I have to check to make sure the refrigerator door gets closed. He's trying new foods voluntarily. All the fruit in the drawer has little bite marks. More food is going in his mouth than on his shirt, lap, or the floor. Last week he got the step stool out of the bathroom to get the cup he wanted from the back of the counter. Then he got a drink of water from the refrigerator door dispenser and put the cup in the sink when he was done.

He puts his dirty clothes in the hamper or down the laundry chute. He tries really hard to get dressed and brush his teeth by himself.

He knows how to use the remote to turn on the tv and the DVD/VCR and get the movie he wants to watch in the right slot.

He gave M. a hug and kiss this morning when M. was upset over a bad dream. He says thank you to the bus driver when she brings him home and yesterday he attempted to say "good weekend."

When we go to the store I don't have to put him in the cart as a means of keeping him with me. He stays next to me and half the time I don't even have to hold his hand. If we're taking a walk, I don't have to hold his hand to keep him out of the road. And if he gets too far ahead, he stops and waits when we ask him to.

The past few weeks he's been spontaneously running around the house pointing at things and naming them. He's much more willing to attempt new words. He's not snorting all that much at school. He knows about 20 sight words.

He's making good progress at coloring in one area rather than all over the page and he can say all the colors (orange is his favorite).

In swimming class he is moving to the belt with only 1 floaty and the instructor says he doesn't even really need that but they have to follow all the levels.

Yup. Things are going good here.

Blogging for Justice

Please read this story. Spread the word if you choose. I don't know this family personally and I don't know any more details than what I have read here. I do, however, feel very strongly that their story should be told. Why would anyone believe that having a sibling with special needs would be detrimental to a typical child? I thought by now, in the 21st century, attitudes had caught up to legislation. I guess we still have some work to do. No family should be penalized because they choose to adopt a child with special needs. No child should be penalized because they have a sibling with special needs.

Before having children I worked briefly at a non-profit dedicated to publicizing the need for adoptive homes for children with special needs. The children ranged in age from newborns to teens. They had a variety of special needs such as Down syndrome, autism spectrum disorders, and Fetal Alcohol Syndrome. Some of them were considered hard to adopt because they were part of a minority group or had siblings they hoped to stay with. I remember wondering how caring for a newborn with special needs was somehow different from caring for a typical child who was later injured in an accident? What would make a parent ok with one situation but not another? Now, I want to make it very clear that I am not against adoption nor do I think people choosing to give their child up for adoption are doing the wrong thing. On the contrary, I think that is one of the bravest things a parent can do. Without adoption I wouldn't have a wonderful nephew. My husband and I talked a lot about adoption before we got married and we may still decide to add to our family in that way someday. But to me, making that choice only out of fear of the unknown or fear of a disability seems misguided. For a variety of reasons I eventually left that job, but I often wonder if God didn't bring me there to think about things like that knowing that P. was in my future.

When I talk about my kids and mention P.'s Down syndrome I often get what another mom referred to as "The Look." People don't know how to react. You see their interest slide away and they change the subject. Should I not mention something that is just as much a part of him as his hair color or his love of ice pops? If I'm not uncomfortable, why are they? If they stick with the conversation, many people comment that caring for a child with special needs must be difficult. It must be exhausting. Yes, it is those things sometimes. They sometimes say that God only gives special children to special parents. If that were the case, He surely would have chosen someone with more patience and more money. I'm not any more special than you are. In fact, if God had asked for volunteers to raise a child with special needs, I would not have been jumping up and down yelling "pick me! pick me!" What these folks cannot know unless they have lived it themselves, is how (for lack of a better word) special having a child like P. really is.

Before having P. we didn't know that much about Down syndrome. When he was diagnosed at one day old, we were frightened. Frightened of all the unknowns: what kind of medical issues would there be, what would he be able to do and not do, would he be able to live on his own, who would take care of him after we're gone? Some of those things are not issues anymore, some of them never were. And for the stuff that's still unknown, we've learned to wait for the answers and take them as they come.

Here is what we do know without a doubt: P. is a participating member of our family. He is not "less-than" his unaffected twin. He's different from his brother, just as he would be if he was a typical child, with different likes and dislikes and different abilities. He has taught us more about life than we can ever hope to teach him. Our marriage is stronger than it might have been otherwise. His brother is more compassionate and empathetic than he may have been otherwise. We all are. His enthusiasm for life and excitement to see what each day will bring are things I am trying very hard to emulate. He will be a contributing member to society in whatever capacity is right for him. He is loved by a large number of family, friends and caring professionals. He loves us all back. He is entitled to all the rights and privileges any other child enjoys, not the least of which is a loving, safe home.

Do I sometimes wish that P. was not disabled? Sure. Do I wish he was anyone else but exactly who he is and who he will be? No, not ever in a million years.