Thursday, March 15, 2012

Special treatment for kids with special needs (and the fine line we walk as their parents)

I want my child to be treated like every other child.

I want my child to get special accommodations for his disabilities.

These two things may seem contradictory. Actually, they're not. Like many things in life, they don't fit into neat, defined approaches. I'll try to explain.

One of the things I most desire for Max is for other kids and adults to look past his disabilities and see the amazing child that he is. I'd like them to treat Max as a kid—someone to play with, joke around with, enjoy activities with. More often than not, kids are wary and adults treat him with kid gloves. And so, when I can, I bridge the gap and forge connections and get people interacting with Max.

Meanwhile, yes, at times I give Max special treatment and accommodations or expect them because they enable and empower him, or just make him happy. My M.O. goes roughly like this:

• When Max is around other kids with disabilities I'll sometimes give in to his wants and needs, because these are children who accept Max for who he is. So, for example, I let Max be the only kid to make a purple project at his birthday party, which was mostly frequented by kids in his class. Plus, it was his special day.
• When Max is around so-called "typical" kids, I try not give in to his quirks so he'll fit in, like that day last spring when I didn't buy the purple crocs at Target because I thought they'd make him stand out. Mostly, I just try to get kids to see Max as the fun-loving kid he is, like with those boys in our 'hood and the trampoline.
• When we are in a public situation and family peace is at stake, I will ask for special accommodations, like seating us in a closed area at a restaurant because it's quiet and Max won't get upset by the hustle and bustle. We often go to places where everyn
• When we are in a public situation and Max's comfort is a concern, I'll ask for special accommodations. Go through the employee line at airport security when there's a throng of people waiting and Max is screeching because he's afraid? You betcha. Get a special needs pass at Disney World so we can move to the front of the line and Max won't get wigged out by the crowd? Of course. Membership has its privileges.
• When Max's quirks disturb other people, like his habit of kicking the seat in front of him on airplanes, we emphatically tell him that it is not OK, apologize profusely to those in front of us and do everything short of sitting on him to get him stop. (We also vow to book the seats in front of us and let Dave and Max sit there as Sabrina and I sit behind, but somehow that never pans out.)

This is basically how I roll, but there's always some new situation to address. Sometimes I just throw my hands up and let things play out as they will, because I am human (shocker!) and I need a break from being so on top of it all.

And so there you have it, my Special Needs State of the Union.

How do you handle this, friends?


  1. Thanks for continuing the conversation begun with your post and comments yesterday, Ellen. You've given specific examples of situations and accommodations for us to consider.
    But I especially appreciate your simple statement about being human. We're all members of that club.

    And it seems the children among us have a lot to teach about acceptance and compassion. When kids are well-loved and safe, they ask questions -"what's up with him?", "why does he get to go to the front of the line?" When these questions are answered in a simple, honest way - children understand - they really do. The concept that "fair doesn't mean the same, but fair means we all get what we need" is a concept children understand - as long as we answer their questions simply and honestly.

    One more thought - let's give our kids PLENTY of opportunities to CONTRIBUTE to the needs of others. Our kids need to be needed. When they contribute to the common good or help an individual person - they experience what it means to be who they are in the world.

    My mom raised 6 of us - and she always said "Everybody brings a different gift to the party". Let's model for our kids an appreciation of everyone's gifts.

  2. Good post Ellen.
    We go through this dilemma often.
    We want the best for Ashley to help him with his challenges and forgive him some of his noisier messier habits.
    But we want him to fit in with every other child so we do focus on discipline and reinforcement when necessary.
    Finding that balance is a tough but I think we're getting there.

  3. Seat kickers are the WORST I am glad you try to make him stop, some parents don't even care.

  4. My Max can be a seat kicker but almost always stops right away if I take his shoes off. I always feel awful when it happens, even once.

  5. It is a very fine line we walk, and I hate to say that, when my daughter Leslie was growing up, I made a lot of mistakes in this area. Leslie has severe cerebral palsy, and it was quite obvious that people assumed that she was severely intellectually disabled, too, and they would just ignore her or would talk to her as if she were a baby. So I would go out of my way to make sure she wasn't ignored. She was totally mainstreamed, with her own aide, and the teachers also went out of her way to make sure that Leslie was included, and helping Leslie was presented as a special treat for her classmates. Well, the upshot was that Leslie grew up believing that she should always be the center of attention, and that her needs came first.

    We did her a great disservice. She is now a very self-centered adult, who only thinks of her own wants and needs. She decided to get pregnant, even though she knew she couldn't take care of a baby...what could be more selfish?

    So I hope other people can learn from my mistakes. I think kids need to learn that, yes, they are special, but no more special than every other child. They need to learn to think of other people's feelings and needs. And they need to learn responsibility and need to learn that they are not entitled to whatever they want. We need to teach them, so that they can be happy, responsible adults who can get along with other people.

  6. Ellen,

    The description you gave at the time of the plane kicking incident indicated that while you tried to do something about it, your husband didn't care if Max was bothering people.

    I know you also said you wanted to get Dave on the same page as you. has this been successful?

  7. For me, what it comes down to this: I want my son to be treated like everyone else as far as he is able. My son can play with other kids (sometimes needing some help from adults), so I want him to be given opportunities to play with other kids. He is capable of learning not to misbehave, so when he willfully misbehaves I address that (throwing toys, hitting his brother, etc.).

    But, autism means that sometimes my son just ISN'T like everyone else and he can NOT help it, so yah, I'm going to use accommodations then. Examples include picture schedules and boarding the airplane first. There is nothing to be learned from forcing my child to sit in a line that irritates his senses to the point where he can not act rationally or willfully. All that does is cause a meltdown and make the other passengers mad. And no point in punishing him for not following directions in class when he's too overstimulated to comprehend the directions. These accommodations will hopefully fade over time.

    Fair does not mean equal.

  8. Hi Ellen -- I'm glad you wrote about this. Ben is about to turn 18and I still find myself twisted in knots at different times about what is appropriate and what I have to be hardline about.

    And the bottom line I've come to is there are no black and white answers. Our kids ARE different. They do have special needs. Meeting those needs sometimes involves providing something that a typical child wouldn't need.

    I think what you are after is for other kids/people to take the time to know Max for who he is and value that person. Which is different from demanding identical 'treatment.'

    Sometimes I feel we harm our children when we put sooooooooo much focus on 'fitting on' -- which must, sometimes, for our kids, translate into "I'm not good enough." Or "I'm not okay the way I am."

    I address this in this post:

    Would love to hear your thoughts.

    Hugs to you and Max! That's one happy kid you got there.

  9. I think it's important to make accommodations because if we don't we won't be able to do anything. Sometimes though it is good to make disability "fun" by playing inclusive games and things like that. When I was a kid I could have 1 person stay in for recess with me. I basically picked the same people, it wasn't a big deal. But I also understand not letting Max kick seats, etc.

  10. As a young adult with disabilities, I'm beginning to understand how difficult it is for parents when it comes to things like this,

    I want to be treated just like everyone else, however I also want others to understand that at times, things need to be done differently.

    Now that I am older and in control of my own life, I tend to tell people to do their thing and treat me as normal and if any issues arise, I will approach them and let them know so that together we can come up with a solution.

  11. I actually find it easier to book the two behind two than to get a whole row. And even if I don't, I find it necessary. It's too hard to keep him from kicking, but is unfair to the person in front if there's anything at all I can do about it, and this is it.

    In general, this whole "treat him normally" thing often doesn't pan out. You wrote in your post the other day about Max that "his personality isn't disabled." But for some kids, it kind of is. I have a kid with wonderful interests, a fabulous memory, and so many beautiful strengths, but it is often all hidden behind the autism that hijacks his ability to productively share it with anyone else because he lacks the desire or skills to do so.

    So in the end, you usually can't approach him regularly, because there are too many adaptations. Most prominently, you have to account for many things that would otherwise be considered rude but are simply social incompitence coming from my kid. And if I'm going to ask someone to view an entire interaction with my child differently so as not to feel slighted or upset, I cannot expect that person to treat him like a "regular" person.

  12. Mary and Galen, it is really good to hear your words of wisdom, perspective and hindsight. (And Galen, wow on your daughter, I owe your blog an overdue visit.) "Fair doesn't mean the same, but fair means we all get what we need" are words to live by. Mary, YES, it's great when our kids can help others. Max helps another girl in his class learn the iPad and he's loved that.

    Annie, yes, Dave came around. He had to on this one.

    Maya, I'm with you: I want Max to be treated like other kids as far as he is able to. But like Louise says, there is no black-and-white here.

    Hyper Aspie, well said.

    Staying Afloat, I do want Max to be treated "normally" in that I want kids to be friendly with him, talk with him, not be afraid of him or wary of him. I don't think that's too much to wish for, for Max or for other kids like him. And, yes, Max is a friendly, social kid. I realize, of course, that's not true for all kids with special needs, I was talking simply about Max.

  13. I guess I am just a weird guy. Ya think? But I consider this, by far, one of your best posts of the year, maybe in the last 12 months? I dunno, maybe because it addresses something so fundamental to every single one of us.

    Most parents, well many maybe, don't recognize the conflict within over wanting both types of treatment simultaneously for their kids, but you summed it up really well.

    I've been trying to for a long time, but...well...I can't SUMMARIZE, don'tcha know... :P

  14. I hear you loud and clear. The thing I have issue with is when we are in public and I'm trying to set some boundaries or limitations ("No Mary you can not have another coke, you've had 3 already") and some kind hearted person gives her the coke anyway. When I tell them 'no' it's as if I'm depriving them of something and I'm looked upon as the meanest person that ever walked the earth. Consistency is so important with Mary. I've always vowed that I will not set any rules that I'm not willing to follow in public as well as in private, but the public won't always let me follow through. But, I would rather they be too kind to her than to be mean to her.

    Over the years I've had a lot of interactions with curious children. The latest was when we went swimming at the Boys and Girls club. A whole group of girls and boys surrounded us and bombarded me with questions. I always try to answer all of their questions as honestly and straight forwardly as I can in terms they can understand. When little ones are staring at Mary I have her wave or shake their hand and say hello. I want them to see her for the kind and gentle soul that she is. It is the adults and the older kids staring that I have problems with, but we don't encounter that very often. I have always felt that one of Mary's and my purposes in life is to try to educate the public that imperfection is neither wrong or scary.


  15. I don’t have kids, so please take my comments as well-intentioned thoughts from an outsider.

    There’s a difference between accommodations and treating a kid like Max as if he were no different than any other kid. Of course he needs accommodations—he doesn’t have the physical, cognitive, or social development of an NT 9-year-old. Accommodations should be a non-issue, like having wheelchair ramps in public buildings and Braille on elevator buttons. But, sometimes this blog seems to suggest that if people could just look past Max’s superficial physical differences, they’d see a kid “just like any other kid” who’s no different inside. He IS different inside. He may be a charmer with a great personality and infectious smile, but it takes more than that—and more than sharing a favorite movie or ice cream flavor—for a peer-to-peer friendship with an NT 9-year-old. A friendly “hello” may break the ice—but then what?

    To all you parents of cognitively impaired kids who long for them to have mainstream friendships, I ask: How many of you have genuine friendships with SN adults? Not just neighborly interactions—but actual friendships? The woman with Down Syndrome who bags your groceries, the man with the odd gait who sweeps up at the pizza parlor—do you invite them over for dinner? Gossip to them about your in-laws? If not, why? Aren’t they adults “just like any other adult” because they like to watch movies, drink a cold beer, earn a paycheck, and enjoy companionship?

    My point is that it’s unrealistic to expect peer friendships, whether for kids or adults, between people who aren’t peers. But, Max deserves a place at humanity’s table, which includes respect, kindness, acceptance—and involvement. I once observed an impromptu ball game at a campground in a state park. Kids—and a few adults—of all ages, sizes, and abilities joined in, each contributing what they could, bigger kids encouraging littler kids, and all having a great time. (Spontaneous splinter groups formed for those who weren’t gung-ho on ball games—some little girls drifted off to have a tea party under a nearby tree.) In this happy mish-mosh, no one would care—and maybe would hardly notice—if any particular kid’s size or ability was out of synch with his age. I like to think that Max would fit right in.

  16. Dear Anonymous,

    I am curious as to why, if you are so well intentioned (albeit misguided) in your question to not have those with disabilities counted as your peers, WHY didn't you leave your name???? This way, we can all steer clear of you, as you obviously do not value individualism.

    Quite frankly, people like your are hardley worth the effort to educate anymore, IMHO. You will always find some excuse to set yourself apart.

    Newsflas: your inability to accept others differences IS a disability. So, I guess you are right.

    You are not somebody I would WANT for my son's peer. His peers would value him as a person, respect his feelings, and believe that he is worthy.

    Thank you for that.


  17. @anonymous, with no children-it's people like you that will poison your children's thinking. It is absolutely possible, and likely, for Max and children like Max to have relationships with his peers. It may take parent facilitation for their initial interactions, but there's no reason his best friend won't be captain of the football team. We should encourage their interactions. Each child will learn from the other, and that's the basis of a great friendship, people that complete each other.

  18. In response to Anonymous... "My point is that it’s unrealistic to expect peer friendships, whether for kids or adults, between people who aren’t peers"...

    All I have to say is that I invite you to do so, be a friend: invite that person with Down Syndrome or with physical disabilities over to dinner.

    I have many friends with disabilities, intellectual and physical, and being their friend (sharing dreams, gossiping, going out to wherever we want, traveling together or right now planning a party on the chat window) is a blessing to my life.

    They remind me every day of the most basic elements in frienship: trust, openness and unconditional love.

    True, as society we need to get close and overcome fear and ignorance. I would maybe have never been friends of a person with disabilities if I hadn't volunteered at Unidos before, but 17 years after my first day as volunteer and friend, they are part of my life and I am blessed by it.

    I have no relatives with disabilites, my school was not inclusive, so I was simply not aware. Now I am and I can tell you, friendship is possible, but you need to challenge your own assumptions and beliefs.

    Hope you can do it soon!

  19. @anonymous- I am an adult with friends who hav SN. I have been friends with ppl from many different walks of life since I can remember. I know many other adults who are friends with people because of who they are, not bc of what challenges they face or don't face. If you don't know that relationships like this exist I would try to get out a little more and maybe make some new friends. You may be missing out on some great life experiences because of what seems to be some pretty narrow minded thinking.

  20. Wow, Anonymous. While I don’t think you really understand what you’ve implied, I felt the need to respond. While I don’t know anyone with down syndrome or autism outside of my family, my son does have autism, and I can assure you that children do not see him as not worthy of their friendship. If you can’t get past the physical appearance of a person or someone’s disability, then you don’t deserve to know someone like our children.. I promise you, that you will probably never meet a more caring person than our children- they could teach you a little something about compassion and acceptance. Thank you so much for your comment- as soon as I start thinking that people are better than the stories that I hear, I get proven wrong- AGAIN.

  21. Wow. Anon, you seem to believe the term "peers" means "identical". One isn't friends with someone because they are the same. It is our own individual differences, differences we all have, that make us unique and individual. You commented "he IS different on the inside". Ummmm, I hope so, just like I'm different on the inside, just like we all are. That is what makes life so interesting. Instead of letting our individual differences separate us, why not have a world where the differences do not define us?

    It wasn't that long ago when it was believed people of different races weren't peers. How could two people who are so....different....possibly be peers? It amazes me that for as far as we have come, physical disability and cognitive differences still marginalizes people.

    To your question asking how many people have "special need" adults friends: I sure do. Our circle of friends covers a vast array of people, ALL different on the inside and outside. Some of our closest friends are people who have the same condition as my 33 month old daughter. We don't considere what their physical abilities are, or what they may have scored on an intelligence test. We consider how kind they are, how polite, funny, loving, sincere, and real they are. These are the same values we find in all our friends. It is the same values we expect our daughter to find in her friends, and expect her friends to find in her.

    Perhaps, it would behoove you, to sear h outside your sameness and make some new friends...

    People are peers when they have a mutual respect and appreciation for each other.

  22. Anonymous- I may not be friends with "the man with the odd gait who sweeps up at the pizza parlor", but I AM friends with my co-worker with CP. And I DO have several Aspie friends...and I DO maintain relationships with my friends who have had brain injuries. I understand that you were trying to convey a point and introduce an angle that may be new. But...well... you're wrong.

    Ellen- This is such a good point. It's such a delicate balance, and I have to assume that it would be slightly different for everyone. My friend decided to home-school her daughter because she's on the autism spectrum and she didn't want her to be labeled or have a stigma....but how will that help her function in the future? Another family friend pushed their Aspie son to be completely mainstream and all but ignored his special needs....and now he's a high school drop-out with low self-esteem who's never really found his "place". This is an extension of the questions that all parents do you protect your children while encouraging them to soar? It's tough to be a parent...all we can do is support each other.

  23. Dear Anonymous;

    I wonder if you realize that you completely contradict what you are stating we can’t have by the depiction of your final scenario. Your imagination of how someone with different abilities would fit in is an inclusive environment – where groups of people of all abilities, ages, and genders meet together over common interests. If you can imagine it on a large scale; perhaps you could stretch to see it fits the small scale as well.

    You asked “but it takes more than that—and more than sharing a favorite movie or ice cream flavor—for a peer-to-peer friendship with an NT 9-year-old. A friendly “hello” may break the ice—but then what?”

    How about the discussion of their favourite movie, the excitement of sharing a common interest, the desire to find connections that is normal for all people. It takes nothing more than finding a common interest to create a peer-to-peer relationship; how it becomes a friendship is up to the people involved, which is no different than ALL peer friendships.

    My world, as my children’s world, is filled with friends. I don’t label them typical or special needs any more that I label them liberal or conservative, white collar or blue collar, French or English. I don’t keep score; I keep connected.

    I imagine not having children might make it more difficult to understand. You do not walk in our shoes and your comments come from a place of observation. If I might make a suggestion – instead of observing, next time reach out yourself – you may be pleasantly surprised with whom you may connect.

  24. @Anonymous... I would like to begin by saying it is painfully obvious that you are ridiculously uneducated in the area of special needs children. These kids are a BLESSING to society and other so called "normal" children because they allow us the opportunity to show compassion, love, understanding, and basic human goodness that we all should possess in our core values.

    These children may need special assistance and accommodations to complete tasks that children without SN have no problems with, but that does NOT mean they are not the same as other children. They still have feelings,they still want to have friends and relationships with other people who are both like and unlike them. Just because they may be on a different cognitive and/or physical level than that of "normal" children does NOT mean they should not be included or treated unfairly or unkindly...

    It means that we as parents need to teach our "normal" children to use their minds and their hearts to help make those SN children into friends and playmates. I have two young children and I fully intend on introducing them to children with special needs. I want my children to grow up respecting people from all walks of life and to do their personal best to include and respect everyone, despite their differences or what you see as disabilities.

    Anonymous- You have said "sometimes this blog seems to suggest that if people could just look past Max’s superficial physical differences, they’d see a kid “just like any other kid” who’s no different inside. He IS different inside. He may be a charmer with a great personality and infectious smile, but it takes more than that—and more than sharing a favorite movie or ice cream flavor—for a peer-to-peer friendship with an NT 9-year-old. A friendly “hello” may break the ice—but then what?" And this entire piece infuriates me to my very core. How small minded can you be??!?! If we raise our children to look past these disabilities why couldn't a NT 9 year old have a peer-to-peer relationship with a SN 9 year old? I fully believe that our children should be capable of accepting children with disabilities as a peer as long as they have been raised to accept others, to be compassionate and understanding, and to treat others as they wish to be treated.

    Finally, I'd like to say that I will sleep soundly tonight knowing that my children will never be subjected to the ramblings of small minded people like you are Anonymous.

  25. Having a child with SN has made me a better person, so I invite everyone to befriend a person with SN and see how they can and will enrich your lives.

  26. Completely off topic, but I couldn't figure out how to mail you directly.

    This product showed up on my clubfoot mailing list today, and I thought about Max and his night cast. Not sure if it's appropriate for him, but thought you might be interested:

    (I have no connection to the company, nor do I know how well it works -- just thought you might like to know about it.)


  27. Mr/Ms. Anony Mous, I feel badly for you, for the reasons people mentioned above. Your view of life is dangerously narrow-minded. How sad it is to live life with a handicap like that. Which you are obviously unaware of, given that you believe you were speaking with good intentions.

    News flash: Many kids with special needs are friendly with kids who don't have them. Same for adults. Sometimes, it happens naturally. Sometimes with our kids, it takes facilitation. But of COURSE it's possible. And wonderful. These children are all peers. KeicherMom says it beautifully: "It is our own individual differences, differences we all have, that make us unique and individual."

    Anony Mous, you are in greater need of a place "at humanity's table" than any of our kids. Open your mind up, if you can.

  28. Wow. So much pain, anger and struggle in the responses to Anonymous' genuinely stated theories and questions.

    This is never easy, but it's worth wondering aloud if the compassion and understanding we are demanding from Anonymous and others like him/her can start with us?

  29. I had read her comment and I think I did understand what she was saying. My dd with DS is 11, she in the gen-ed class rooms, has been on a typical cheer team for over 5 years now and does have kids who SEEK her out to play with her, come over etc....BUT!! I have also sought out friends for her that also have DS or other disabilities, just as *I* have sought out other parents who understand everything about us with out me having to explain.

    I have noticed my dd is the same. She loves all her friends, but she is more comfortable with those who are most like her. At her same level... and that also means she has a hard time being friends with someone who she has a hard time reaching out to because she can not compensate for their disability.

    I have to come to see that her relationships are just as complex as anyone else's. She has different friends for different reasons. She loves them all, but they all bring different things to her life. Enrich her in different ways. From where I am right now, I say, let friendships bloom where they may, never say never, seek all types of friendships for your children, just as you do for yourself.

    I think this gal was simply trying to say that really DEEP friendships are most often formed between people who have common bonds, common interests, common skills etc... and I have to totally agree with her on that. It's true for Why would people with a disability be any different?

  30. You know, I disagree. If you anonymously come to my blog and inform me that it is "unrealistic" to expect my child to have friendships with kids who don't have special needs because he is not their peer, I consider that both offensive and insensitive. I am not quite clear on why this person felt it their duty to note this. My opinion about my son, happily, isn't going to change. Max is like other kids in many ways. And he is fully capable of having friendships with his peers. Because he is a CHILD. He is not another species.

  31. I didn't read any of those thoughts into her comment. Unless she responds with some clarifications, we will never know what she meant to say.

  32. There was nothing to "read" into this person's comments. She point blank said friendships are "unrealistic" and that kids with special needs are not "peers" of other kids.

  33. My Mary is basically nonverbal and never complains about anything . . . . well, she does have her ways of letting me know she isn't happy about things I've done. I've always appreciated the fact that Mary doesn't whine, because my nerves can't take a whining child. But, the problem with this is that Mary doesn't complain when she is sick or hurt and I have to watch for symptoms like you do with an infant. That sometimes gets us into trouble because things can become serious by the time symptoms show up. Although, this past weekend Mary had a stomach virus and she suddenly started crying, and Mary never cries. Scared me to death. When I asked her what was wrong she looked at me pitifully and said & signed "Coke". I could hardly keep from laughing. She knew we had coke in the fridge and I hadn't provided or offered her any. I told her she could of course have coke and she didn't need to cry to get it. All was then well with the world.


  34. I still work so if I'm tired during the week I just have to power through it. On the weekends Mary and I pick one day and have a "pajama day". I am an avid knitter and Mary has created her own game of solitare so we sit on the couch I knit, she plays cards we have coffee and usually breakfast and lunch on the couch. I will watch TV or listen to audio books while I knit. Sometimes we even take a nap in the afternoon. By suppertime I usually get motivated enough to fix a meal and we venture into the kitchen to eat. It's very rejuvinating to take a day to do nothing and never get out of our pj's.


  35. I loved your potty training boot camp story. I remember it well. Back when Mary and I were doing it (remember she was 19 at the time and just moved out of a state institution) we would do a 24 hour time study over several days (too long ago to remember how many days)to determine what times she went most frequently. I was glad when that was over. Now that she is heading toward being a senior citizen we are going backwards - she is now in depends most of the time because she can't walk to the bathroom alone and she doesn't ask for help. I am very proud of her today, though. She has made it through 3 nights in a row dry and didn't even have to get up during the night. I know that it probably isn't going to last, but we appreciate the good days when they happen. I was praising her this morning and she looked at her depends and said "Oh wow!" A friend of mine told me how lucky I am to have that kind of sunshine in my life. I am thankful every day for her.


  36. First of all I would like to comment on Galen's comment about disciplening her daughter. I adopted my daughter, Mary, when she was 19 years old. She had lived in an institution since she was 2 months old (she had Down's Syndorme). I have always been very strict with Mary and had very high expectations of her. I always felt that I not only had to teach her how to be social in the outside world, but had 19 years of institutional behavior to help her get rid of. People used to get really angry at me because I was so consistently "hard on her", but consistancy is what got us where we are today. I always wanted her to be as responsible for her actions as she was capable of being. So, Galen, I agree with you that it's a fine line of keeping your child from being excluded or spoiling them into believing they are the most important person in the world. I was never able to get Mary to understand about crossing streets and what would happen to her if a car hit her. That is partly because she thinks the whole world will, and should, stop for her to pass through. (Gave up on teaching her to cross streets).

    Secondly, I want to comment on holidays. Mary is a very calm, layed back person so holidays aren't really a problem. She loves all of the good food and that is pretty much what holidays mean to her. She loves the presents at Christmas, but once they are openned she is through. It's more the number of packages she gets to open rather than what's inside. As far as birthdays go, she only likes her own. She doesn't get the joy of watching someone else open presents and usually won't partake. I wouldn't necessarily say she is selfish, just watches out for numero uno.


  37. Loved your vacation/shower story. I love reading about Max's adventures. People at work think I'm crazy because I start laughing out loud sitting all by myself reading the computer. Max is a great way for me to start my day on an upbeat note.

    Mary and I just bought (or actually in the process) a new house! So excited. The wonderful thing is that we aren't going to need our wheelchair ramp because there are no stairs anywhere - inside or out. We are going to have to make the bathroom more handicap accessible, though. My dream is to get her one of the walk-in tub/showers. She has a bath chair lift that lowers her into the tub, but she can't get deep enough in the water to help soak her arthretic aches and pains. My real dream is to get a slipper tub or a soaker tub, but I think as she ages more and her arthritis gets worse the walk-in tub/shower will be more practicle. Fortunately, she is covered by Medicade waiver (which also provides her respit care so I can go to work)and they pay for such renevations.

    I love Max and your wonderful stories. Thanks for sharing.


  38. I am commenting on today's blog regarding the "R" word. This is my biggest pet pieve and I never let anyone get away with using it around me. I remember back in the '80's when it was a popular kids' word, but here in the 21st Century there seem to be more adults using the word in a derogatory manner. I had a doctor's office receptionist say it the other day then realized who she was talking to and asked me to "excuse her language". I told her I couldn't excuse her and that she needed to find a different word. I've told people they might as well go all out and use the "N" word because to me they are equally offensive. The funny thing to me is that people get all sensitive about me speaking up to them, but don't think I should be sensitive about their choice of words. Fortunately I'm old and I don't care what they think. It is my personal battle to make people aware of how it makes me feel, especially when they say it in front of my daughter, Mary. They all think that since she is nonverbal that she doesn't have the sense to understand what they are saying. I have news for them . . . she understands everything they are saying and she doesn't like it either!!!!


Thanks for sharing!

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