Older and Better

I find that I am becoming more of a homebody than ever. I never want to leave the house, even on the weekends. I do leave, of course, because things like groceries don't deliver themselves and because my kids need to be out in the community. But I am just so freaking tired of all the stares from people.

I don't know if people are staring more than usual, or if I am just more sensitive, or if as I get older I get less tolerant, but I do know that I just don't want to deal with it.

We had some errands to run this past Saturday - the sporting goods store to get lacrosse gear for Ronnie, the pet store to get Cooper a new toy - and then we had lunch at a local deli, a deli frequented by families. I lost count of the number of people who would just stop and stare as we went by. I don't mean just a sideways glance, but just a full stop and stare.

I live in an area of town that is a tad more affluent than some of the inner city areas. Others who live in this area are seemingly intelligent, well-heeled folks (based on their jobs, their clothes and their vehicles). But I swear, polite, positive behavior does not seem to come with education, money and big houses.

Parents stare, their children stare and are never corrected for it, shop people stare, waiters and waitresses stare, even police officers sometimes stare. But you know who almost never stares at my unique family - elderly people. Why is that? Do people just mellow as they get older? Have they seen so much in their lives that a beautiful young girl with only one eye and a handsome young man who uses a wheelchair and talks with his hands are nothing out of the ordinary for them? Or have they just learned tolerance and acceptance as they have aged?

I would like to know their magic formula, and then I would like to sprinkle that over the rest of 'humanity' (and I use that term loosely....).

Let Me Share With You

Just because our children have different needs and abilities does not mean we don't like to talk and brag about them. We can't usually talk about the after school activities, the football games, the parties, the sleepovers, or the dances our children attend. We don't often talk about the shopping trips with our daughters or our trips to the movies or the local theme park. And, we don't often talk about the future - what colleges are children are applying for, the type of husband or wife we hope our child will choose, or the number of grandchildren we long for.

Rather, the subjects on which we can speak involve g-tubes and traches, therapy visits and doctor appointments, impacted bowels and catheter sizes, special needs trusts, school struggles and court cases.

In other words, we speak about things most people aren't interested in hearing.

It may make them uncomfortable. I know my co-worker doesn't want to hear why I have to scrub my bathroom three times a week. They may not know what to say or how to contribute to our stories. They may even think we complain too much or make too big a deal out of things.

With a few rare exceptions, they don't 'get it.' They can't imagine living the life we special needs parents live, and they can't imagine having a child for whom end-of-life planning happens before the child is 5 years old.

But it doesn't lessen our need to talk and share. What can I do to make these non-special-needs parents and caregivers be comfortable when hearing about my life and the life of my children?

Knowing The Difference

Ronnie loves the Three Stooges. He loves anything where people fall down, trip, get hit, stumble, etc. He will burst out laughing whenever he sees that on TV or in person.

One of our favorite interpreters told me that such is common among people who are Deaf. She said that almost every Deaf person she has ever known finds physical acts such as those very funny.

I get it but there are some times that Ronnie's laughing seems really inappropriate.

Falls are not always meant to illicit laughs. Stumbles are often accidents and the person doing the stumbling doesn't like being laughed at. A person fainting usually finds nothing funny about their situation. But it seems Ronnie can't tell the difference sometimes - or at least he isn't distinguishing when it is appropriate to laugh and when it's not.

I have often corrected him when his laughter isn't appropriate, but he seems hurt when I do that. (I don't do it in front of anyone.) I'm really not sure he is getting the message.

How do I help him distingush a pratfall from an embarrassing or hurtful fall? Any suggestions?

In On The Secret

I stumbled upon a story the other day which is written by the mother of a child with very significant disabilities. Her story put to paper the thoughts that have been tumbling around in my head ever since adopting my daughter, Ashley, over 13 years ago.

Here’s a short excerpt:

Not everyone is so nervous around disability, of course. On that same walk with Clemmie one woman asked what condition my daughter had, stroked her hair and told her she was gorgeous. The woman told me she used to work with disabled children. Ahh, now it's clear – she knows what the others don't; she's in on the secret. She knows that the profoundly disabled can change your life and whole world view not through achievement, not by doing, but just by being.

If you want to brighten your day, take a few moments and read the entire article.

Love Can't Always Conquer All

Last Monday I wrote about the child whose adoptive mother sent back to Russia. I tried to explain how everything being written and heard in the press might not really be 'everything.' Today I found an article in the New York Times that does a much better job of saying what I was trying to say:

In Some Adoptions, Love Doesn't Conquer All

Some of the most telling quotes in the article are:

“You can’t ever think you are getting a clean slate,” said Victoria Barrett, who lives in Tiverton, R.I., and adopted two children from orphanages in Siberia, a boy and a girl, now 8 and 7. “You can’t think that all you have to do is love the child and everything is going to be fine. It’s not like that. It takes specialized parenting.” And...

“Most of these parents are grossly, grossly ill-prepared,” said Ronald S. Federici, a developmental neuropsychologist. “Agencies saying they do all this training and support — that’s a bunch of junk. Some do, most don’t. A lot of families are uneducated at huge levels about the psychological trauma of being deprived and neglected, of under-socialized children who have had profound developmental failures.”

“I felt that I was a failure and that I condemned her to a life of hopelessness,” she said. “I knew I couldn’t help her, but I knew I didn’t want to throw her away. But sometimes as a parent you feel like you have a lot more power than you do. You say to yourself, ‘Can I make a difference in this child’s life?’ And if the answer is no, you need to walk away.” And...

“I don’t agree with what Torry Hansen did,” she said. “But I almost think there’s a certain little part of me that says, ‘You just saved yourselves nine years of torment.’ Knowing what I know now, I would have given up sooner because a lot of people got hurt.”

These quotes that I pulled out are the ones that spoke to me - a parent of a child like those described in the article. I didn't give up on my child, but I came close. Please read the article and try to understand how difficult these situations can be for families - not just the parents, not just the children - the families.

Teenagers!

Teenagers are such complex creatures, aren't they? Most of the time I can almost figure out what is going on in their minds and their reasons for the things they do. But every so often, they throw me for a loop. Ronnie, with us for just a week now, has already done that. And Ashley, well we all know what a smart little thing she is. But she still never ceases to amaze me.

Here are some observations from this week...

Ronnie

I noticed a couple of days ago that when Ronnie was getting dressed for school, he kept his pajamas on under his clothes. He actually went to school that way a couple of days. I asked him why he was doing it, and he just shrugged and didn’t seem to want to share an answer. This morning I told him that it was going to be a very warm day, and that wearing his pj’s probably wasn’t a good idea. He didn’t wear them today, but I am still really puzzled why he wanted to.

Does anyone have any ideas why he might want to wear his pajamas all day under his clothes???

Ashley

Ashley has tendency to get up several times each night. Actually, it’s a good night if she only gets up twice. Because she is blind, I worry about her wandering around the house at night and perhaps getting hurt. So, for many years I have put a baby gate at her bedroom door. However, even though I have put it up, for the last 3-4 years, she has been quite adept at taking it down. The noise was enough to alert me to get up and steer her back to bed before she started wandering.

But just before Ronnie joined us, I decided to have a dutch door installed at her bedroom. I thought that I could leave the top part open at night so I could still hear her, but the bottom part could be closed and locked so she wouldn’t wander. Seemed like a good idea – at least until she figured out how to unlock the door.

Last night, or early this morning actually, I was sound asleep. She walked into my room and turned on the overhead light, smiling all the while. So much for the lock….

What interesting things have you observed about your children this week?

I Am The Mother

If you are fresh out of college with a degree in education, social work, medicine or something similar, please do not pretend to understand my child’s needs better than I understand them.

If you have been a practicing professional for many years, and your practice has included children with special needs, I am interested in your advice and opinions. However, the ultimate decision on how to raise my child rests with me.

Just because you have a cousin who has a child with Autism, you do not know what is best for my child with Autism.

If you have raised no children of your own, don’t act like you know how to raise mine.

Unless you plan to support my child as an adult, you have no say in the choices my child and I make concerning his/her future.

It’s kind of you to try to understand the worry, the guilt, and the all consuming love I have for my child with significant special needs, but you really and truly cannot understand. Please do not judge me based on your limited understanding.

Just walk beside me – hold my hand when I need to feel someone’s touch – hug me when I am down – cry with me when I am overwhelmed with worry.

Don’t lecture – don’t judge – don’t pretend.

Rejoice with me in my child’s every accomplishment, no matter how insignificant it may seem to you.

Respect the choices and the decisions I make. Respect me. Respect my child.

I promise I will do no less for you.

Easier Because of You

I’m a glass half full person, but that has not always been the case. I mentioned a while back on my blog that I used to be a police officer. For 5 years I worked in the worst areas of my city and witnessed things no one should see. One of the many things that broke my heart were the children that had been abused by their parents. But that was just one of the many horrors that I saw every week as an officer.

Living that day in and day out began to turn me into a very cynical person, and I really did not like the person I was becoming. It was that reason I decided police work was not for me. And ever since then I have made the commitment to myself to have a more positive outlook on life.

It’s not always easy. I am not a Pollyana/Stepford person who turns a blind eye to the suffering in the world, the negative situations that all of us face at times. Stories of child or elder abuse still disgust me – natural disasters and the effects they have on hundreds of thousands of people make me want to jump a plane to go help - news of the poor economy worries me greatly – and the increasing violence in the world scares me more than I can say.

But with maturity I have learned to balance the bad news with the good that exists in the world. And while I don’t ignore that which is negative, I have made a conscious decision to live and project a more positive life. To accomplish that, often I must distance myself from people who have chosen a more negative approach to life.

I continue to surround myself with other glass half full people, people whose approach to life mirrors mine. I had a difficult time finding people like that until I became the parent of a child with a disability.

With a very few exceptions, I have found that parents of children with disabilities approach life with smiles not frowns. These are people who have every right to be negative, but they too have chosen to walk a positive path. I don’t know why this seems to be true. Maybe we feel we need to be positive to balance all the negative comments and low expectations we fear our children will face. Or maybe we realize that we can’t navigate this world of disability alone and we choose community over isolation. Whatever the reason, I want you all to know that you lift me up – you provide the inspiration I need to continue when life gets difficult – you link your arms in mine when I stand on the cliff of despair.

So thank you Lynnette, Jane, Jackie, Bradford, Heike, Emily, Carl and Elaine. Thank you Mommy Dearest, Attila, Marla, Mama Edge, Corrie, and Azaera. Thank you Mike and Dawn, Terri, MMC and Terena. Thank you Queenbuv3, and thank you everyone that I missed.

You make being a glass half full person much much easier!

You Know Who You Are

I know you don’t understand the choices I make. You can’t imagine why I would want to get up at 4:30am each morning, make multiple breakfasts, get kids dressed, make beds, do one load of laundry, administer LOTS of meds, and get Ashley on the school bus…all before 7am.

You can’t put yourself in my place and feel the joy I do each morning when Ashley wakes up,smiles that dazzling smile of hers, and I know that I have just witnessed a miracle.

You don’t understand why I would second mortgage my house to fight my school district to make sure Ashley gets the education to which she is entitled.

The thought of three to four doctor visits each week makes you shake your head in disbelief.

The roll of your stomach whenever you think about having to change a G-tube convinces you that you could never do it.

I know you get tired of me complaining about places not being accessible, about businesses not having enough handicapped parking places, and the way that people stare whenever Ashley and I walk by.

You’ve asked me how I keep going each day when I am up 4 or more times each night with Ashley.

I see the confusion on your face when I get so angry whenever you say ‘poor Ashley’.

I know you could almost understand when I adopted Ashley, but I know you thought I was crazy when I adopted Jessica after that, and then Corey after that.

You were absolutely baffled as to why I felt like a failure when Jessica broke two of my ribs during one of her rages.

I know it frustrates you when I have to refuse a night out because I am too tired and/or I don’t have enough money.

And I know you think I have absolutely lost my mind because I want to adopt another child, a child with significant disabilities.

You are my co-workers, my neighbors, the staff at school. You are the people who think you know me, but really you don’t.

You are the people who won’t take the time to try and understand.

But fortunately, there are people who do understand. Mothers and fathers like me. People with disabilities who understand the value of life and applaud the people who have stood up for that value. You know who you are, and you really do understand. And I am so grateful that our paths have crossed.