This has been an emotional week and the frustration has been building for some time. So here goes...
I'm tired of it. I'm tired of pretending to not be offended by people's comments of "retarded," "the short school bus," "those people," the "retarded" hand gestures. Why do I always have to be the bigger person and ignore such ignorance? And why don't others around me stick up for Maxwell in his defense? I often will speak up but others times I am caught off guard. And even other times I have basically been recommended to not say anything because it was harmless.
Yes I know people "don't mean it," but that doesn't mean it hurts any less. I'm sure that "pre-Max" I used the word retarded and as a child I remember doing "the gesture." Am I horrified that I was so callous and ignorant? Absolutely. For the most part though, I was a child and simply didn't know any better. But boy I wish I had. Oh how I desperately wish I had known better.
And the staring? Tired of it. So my kid uses a walker, please observe quickly and move on. If you have questions, inquire politely. Not "what's wrong with him" and please no whispers or pointing. Parents, the syndrome is not contagious...don't worry. If your children ask questions or talk with Max, you don't need to hush them. Let's teach them at an early age that disabilities are natural...a part of life...and nothing to fear. Encourage interaction. Trust me, they will learn and be inspired by my amazing son.
Simply put, Maxwell is an incredible human being. So are his other friends with developmental or physical disabilities. They are perfect in God's eyes...and in mine. This is exactly how they were intended to be. Oh how I wish the entire world shared this belief...and didn't just pay lip service about taking care of "those in need."
Come on people, don't lower your standards for those with disabilities. They deserve a life filled with love, joy and success just as much as every other individual. They simply might additional support to reach their potential.
I feel like people find it "ok" for everything Max has to endure because that is part of his life. Surgeries, illnesses, therapy appointments every day...it's a lot for a little guy...with or without disabilities. It's not ok, ok? Even though this has been our life for the past 2 1/2 years, it still can be emotional, scary and frustrating. But I simply choose to keep those emotions inside for the most part. But trust me, they are still there and shouldn't be shrugged off because we are "used to it."
And speaking of lowering standards, I might as well mention another frustration. It drives me nuts when I have a concern about Max's progress and mention it to someone else. Do you know what I get most of the time? "Oh but he is doing so great" or "but he's so cute....look at him." SERIOUSLY? That's all you got? I'm sorry, I know people are trying to be nice and cheerful. But I and other parents sometimes simply need to express ourselves honestly and not always have to paint pretty rainbows for the world...just so we don't make anyone feel uncomfortable. Would parents of typical children be happy if their child was considered "globally delayed" yet was really, really cute?
Of course not...you would be sad sometimes that your child faced such an uphill battle and you would desperately wish it was easier for him.
I don't need to be convinced my child is amazing or making great progress. I am head over heels in love with Maxwell...but my heart still aches at times. I ache that people don't take the time to learn his language, better understand his challenges, or communicate with him at his level. I ache about the future and what further challenges await us.
When it is me and him, I don't stress about his challenges...we laugh, we play, we giggle and we live our lives as proud mommy and adorable son. The sadness or frustration kicks in when we are with friends, family or strangers and he is treated differently...somewhat of an outsider. So many people just don't get it or don't want to take the time to get it...and honestly I am tired of it.
Just tired of it...
23 comments:
Amy, I am not sure what exactly to say except I love you and I think about and pray for you and little Max a lot.
OMG AMY YOU HIT THE NAIL ON THE HEAD!!
Pretty much everyone I know, knows not the use the "R" word around me and if they do slip they say sorry 500 times.
I have one friend that when she is with me and other people she knows uses that word she tells them how I hate it, well I do not need her to explain to the world why I hate it, sometimes I think it makes matters worse.
I know I say things like "MAx is doing so great look at him" I mean he is far ahead of Eva and I just am amazed at his progress.
I know its hard and I am right there with you babe!!
Hugs,
Crystal and Eva
With my son being born prematurely and needing therapies, etc., the one thing I was thankful for (other than he was making progress) was that thru his therapies, he was exposed to children and adults with varied disabilities, so even now at 10 years old, he takes it in stride if someone is "not typical". And,I got an education along the way, too.
All I can say is...Amen, Sister, I hear and feel every word you're saying. I guess it's why Arlin, Katie, and I have become somewhat hermits and keep to ourselves most of the time. I know that's not healthy in a sense, but it's the only time we feel truly comfortable and happy...in our own world, where no one judges, ridicules, or says ignorant things. Sad, but true--and I don't have the answer on how to change it. :-(
Love you guys,
Leslie & Katie
Amy, I'm sorry to read that you hit the emotional wall this week. I don't know how to make the world a more friendly place to people with special needs. Maybe it's a "one person at at a time" thing. And it sucks that we have to be tougher than tough at times in the world when people stare or say stupid things. At times it's almost impossible to bear, but we keep going. Trying to predict the future is a scary thing to do because we don't really know what's going to happen and yet as humans we want to know so we can plan. I feel your frustrations. Even the prophets every now and then complained about the task God had given them. Keep up the good fight my dear!
Amy- I just wanted to let you know I am thinking of you and Max.
Amy,
I know that I haven't posted for awhile but I UNDERSTAND where you are coming from.
Just about a month ago, I was walking around a restaurant with Lauren and a lady yelled out, "Oh My G**, What did you do to her head?" I said, "It's a birthmark." She then said "Oh my, I'm sorry." I just shrugged it off but deep inside it hurts.
I know people don't see huge tumors hanging off a child's face everyday, but come on..be polite.
I am just amazed that you held off for so long.
Hugs
Dana
to add to post....I only feel like "Home" when I am in NYC where there are other mothers and fathers that are going through the same thing. You can walk in and not feel like people are STARING at your child or whispering.
You never know what someone else is going through even if you are going through the same thing. Everyone feels emotions differently. I think that is why people try to say things that are helpful when you are talking to them about MAX but they don't always come out the way you would hope them to.
Dana
As a mother I cannot imagine the hurt you must feel when people are less than kind to your adorable amazing child! I lost a child at birth and on a very SMALL scale, experienced all the 'wrong' things people can say...my son was a twin and you don't know how it hurt when people said to me 'at least you have another baby'..UH? So on some SMALL level, I get what you are saying...
Having said that..I do not have a child of my own with disabilities..but I have tried to learn how to 'react' or not 'react'..and I have to say, I have learned ALOT from you and Max! But please, always post things that will teach us further. Is it ok to ask you what his condition is? (I have never said to anyone, what is WRONG with your child..instead I say, what is their condition?) is that ok? We need to learn.....I don't want to say or do the wrong thing..but then, I don't feel comfortable ignoring a child either! I DO look at them and I DO tell my children that they just 'learn things differently' but I also make sure I tell them that they are just like all of us...we all have different ways of learning different things..is THAT ok to say? I genuinely want to be educated about this! :)
On another note, I pray for you and Max all the time..I cannot imagine doing what you do as a single mom...you and Max ARE amazing...and I am sorry you feel hurt and frustrated..I wish I could wave a magic wand and take it all away..but I can't...so I offer my thoughts and prayers..not enough I know...but very sincere!
Hugs
Jaye
Amy, I echo Jaye's comment that I want to learn, so keep this honest & good advice coming. Also, I enjoyed the article about you & Max in the WCEL newsletter, and it inspired me to help with what I could. Finally, I was so disappointed to have to miss your class last night, but I hope to make it next time! In the meantime, I hope February brings more little victories for Max, and I look forward to reading all about them.
Heavy sigh.
Couldn't have said my last few weeks of emotions any better than you just posted. This is so much more of an uphill battle with people's perceptions than I ever knew (prior to Tommy).
And looking into the future it seems only harder as our kids grow older. I learned there is a 70% unemployment rate in the disabled community, most of us worry when the national unemployment rate gets close to 5%. This world has much to learn from a family like yours!
My heart has been heavy with the same things you mention in your post.
ok one t;hing i allways say hes doing good hes soooooo cute but ATHATS COZ HE IS AND HE IS MIGHTY MAZX FOR NOTHING LOL i get that stuff all the time i dont know if u read my story i sent to the charge list that i did for a thing out here i will email u it personaly basicly ull get a lol out of it coz the stuff i said bout school people is what i fea could happen to max what i fear for all our little chargers love u
Amy please accept my deepest appologies if I have ever offended you, max, kristy, or dylan or anyone else for that matter with a comment or email that I left to you. I don't pretend to know all that you are going through..I do though understand your frustrations and angst with society..and your post brought back many memories of when dragonboy was first born. The pointing and accusations.
Again, if I have hurt you in anyway that was never my intention and I am truly deeply sorry.
Hugs and much love.
Amy I think everyone can learn something from what you just posted. I'm sure I've said the wrong thing but since learning more and more about Max and just what I've learned throughout life, we live in a society that has blindly become oblivious to being offensive. I hope lots of people read your post and will think before they speak. I agree 10 million percent to not withhold children from interacting with other children just because they have a "special need". We all learn from each other and it's so special to see that interaction between kids AND adults! God created everyone exactly how He wanted for a specific reason and part of respecting that is exactly how you have stated so wonderfully! Thanks for holding us all accountable!!!
Amy, thank you for saying so well what so many of us feel. I've never been exactly sure what causes that uncomfortable feeling when we're around people sometimes, but I think you just shed some light on it. And I'm with you, I absolutely DESPISE the "R" word, as Crystal puts it. It's terrible when kids say it but when adults don't even know better... Come on!!! Anyway, I hope you have a better week and I'm thinkin' about you and Mighty Max.
Shelly and Luke
Amy - Thank for your raw honesty. I know that I cannot understand on a personal level exactly what you experience everyday. Nor can I say anything that is the least bit appropriate here except that, from the bottom of my heart, you are one of my personal heroes, as is Max. The dignity and grace with which you face struggles that would shatter a person with less faith in themselves, their God and their child, is truly an inspiration. I never want to minimize anything that the two of you face by trying to be profound or pithy here. But know that you and Max are always, always in my thoughts and prayers.
I can't believe people can be so rude!
I am so sorry. I have to admit that I often read your posts and look at pictures of Max and think, "But he's doing so well!" It's easy to forget that for you, it's a daily struggle to keep up all that wonderful progress. So I'm sorry for my ignorance because I know I would be one of those people who seems to minimize the situation if we met in person, not realizing how offensive it actually is.
Lara in WV
Amy, You have just put into words the feelings I have struggled to communicate. I'm sorry you had such a hard week. Mine came last month when I went to a "mother's night out" with my friends and a newcomer started to ask about birth stories and "my child is doing this, what is your child doing"...you know... As soon as I said that my son had special needs I was outcast from the conversation. I didn't want to be the downer so I kept my feelings to myself but came home and cried. A lot of times I do feel like a social outcast. My friends want to know what I am going through but how can I tell them? How can they know what it is like to fear for your child's life every day? How can they know what it is like to watch every other child shoving cheerios in his/her mouth while your child can't even eat baby food. I never knew life could be so hard. I would give anything for Jack to avoid the hardships he will face in life but I can't. Sometimes I feel like kids can be cruel but adults can be worse. They should know better!!! I wish there was an easy way to deal with it. Well, as long as we're wishing....I wish none of our precious babies had to go through what they do. But then we would not have one of the most amazing children in the world.
I hope you have a better week this week.
Who can read these words: "Of course not...you would be sad sometimes that your child faced such an uphill battle and you would desperately wish it was easier for him." with a dry eye Amy. You speak for everyone of us exceptional parents and yet I've never seen such words so eloquently put. You astound me how you feel like this and yet have time to help someone like me in the process. And Max is incredible as you know and we'll keep telling you that and wowing at what he does. He's incredible becausee of his mentality. There was a post on the listserv today expressing your feelings and it made me think, I'm still at the stage where people will stare at Reu (being suctioned or fed etc) and I'll just bla bla bla about where he's come from to the extent that their typical baby's story doesn't get a look in and each time I walk away so proud. I know this will get harder as time goes on as you experience. It stinks. We have no choice. It makes us weeker. It makes us stronger. It's the 1:10,000 ticket we won. Love and always inspired by you both despite what you say...
I hope you don't mind... I've reproduced yr words on Reu's blog because your message is so universal and needs to be shouted
I have never commented on your blog and you don't know me, a good friend who's daughter was born prematurely told me about your blog and Might Max. I must say he is addicting and I don't go much more that a day without checking his progress and looking for new pictures and praying for each milestone.
Your message "just tired of it" hit a cord with me. It made me think about how I react to children and adults with special needs. For that I thank you. Then I had the opportunity last evening at swimming lessons with my 4 year-old son who has a new student in his class who has Down's Sydrome. This little boy is 6 and he and my son had quite a discussion in the locker room, I pray that Cameron will continue to enjoy every person just as they are and not judge. Your statements made this experience so much more special. Again, Thank you.
Amy,
I wish I lived close to you so I could give you a hug. Although Max is adorable I know you go through heartache for him. I know you wonder about the future. That is why we, as a nation, have to get alot better at offering services. And making it easier to access services. And insurance......again another nightmare. I will never know what you're going through but as a mother I am on your side and right there with you, even though it's across the miles.
I'll tell ya what, I better NEVER catch my kids ever using the "r" word. Or their friends, cause all he** will break loose. And I'll go off. It's just that way with me. There's too much info out there for people to STILL be so darn oblivious!
We are all here for you and Max.
Your friend across the miles,
Shannon in Austin
PS: I had one man tell me that I should have had 2 boys cause girls are trouble. I wished I had a laser beam thingy so I could have zapped him!
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