It is no secret that my son Daniel is developmentally disabled as a result of his extreme premature birth. I have blogged about his physical, emotional and mental struggles and his triumphs all the time over the last four years of blogging. He has come a very long way from that day when he fit from head to rump perfectly in my right hand and he has much more of a difficult, incredible journey to travel. I can’t be prouder or more nervous for him as he faces each day of his amazing life. I imagine any parent of any child with special developmental or medical needs feels the same way that I do.
Recently I overheard a conversation between two young mothers about their reasoning for not expanding their own families…okay, I was eavesdropping! Anyway, the young ones both concluded that although they love being mommies and would love to have more babies they just can’t because what if the next one is (cue soap opera tense moment music) “damaged in some way like retarded or something?” They go on to agree that it is just too hard and too much for any family to take on this responsibility of a damaged child and since there are no guarantees…
Oh yes they di-id!
Believe me, I so wanted to whip around and offer more than my 2¢ worth. These dumb bunnies desperately needed to receive some of my mind’s spare change whether they wanted it or not. But I reigned myself in. I remained silent in the knowledge that, like my t-shirt that I was wearing stated, I was blogging this!
Really, people like this can’t be judged too harshly. They are clueless because they haven’t lived anything but their own sheltered life. They have no idea of anything other than their own meager existence. Permit me, if you will, to offer a glimpse into the life of just one family raising a school-aged child with developmental disabilities.
We have our bad days as we see our child struggle with dressing and other, more personal self care activities that most kids his age accomplish without any help. We have the days of total, complete frustration just trying to complete the weekly first grade homework packet. Those days we also have a moment or two of gratitude that someone at his last IEP meeting had the foresight to suggest homework expectations be amended to allow for a slower, self-guided pace on an as needed basis. We see how hard he struggles to “keep it together” when he is sensory overloaded in the chaos that is the school playground before and after school. Some days we aren’t sure how we feel when we come to learn that his struggles and triumphs are fodder for yard duty moms’ gossip on campus. Yeah, he is amazing in spite of all his obstacles but stop talking about him like he is a freak of nature, I want to rage at them.
We have the good days too. When he asserts his preference for how he wants to wear his hair or what shirt to wear we are proud that he knows what he likes and can voice it. One day he very quickly reads through his weekly sight words with no prompting at all and we just squeal with delight on the inside. He confidently figures out his math word problems and we are amazed. As he bravely takes on the arduous task of spelling and writing his surname we quietly cheer on his determination. It is a freaking long name for any first grader to learn how to spell and write…just ask his four “normal” sisters. When we hear his teachers describe all the things he is accomplishing in the classroom we just want to jump up and down and cheer. Sure he has miles and miles to go but just look at him.
What an amazing boy he is!
This week, even more amazing to me is his compassionate heart. At the end of the school week last week I found in his backpack this award.
According to his teachers, Daniel took the initiative to reach out to a friend in need. One of his classmates had gotten into a bit of trouble and was disciplined. His teacher tells me that the poor boy was devastated that he had gotten into trouble and was on the verge of tears. Daniel, witnessing this, walked over to his classmate and put his arm around the boy’s shoulders and whispered, “It’s okay friend.” He then walked his friend over to a free play area of the classroom and got his classmate engaged in a new activity. The classmate’s transgression was forgiven and forgotten. Daniel reached out to reassure his friend of this Room 1 absolute truth. Mrs. L reported that Daniel’s reaching out to a friend in need touched everyone. As she said to me, we all should have the compassionate responsibility Daniel has.
What an amazing boy he is!
Make no mistake, life with a child with special needs is filled with good days, bad days and truly amazing days. This was one of those amazing days. My son taught an entire classroom, teachers included, compassionate responsibility. What family wouldn’t celebrate a day like this?
Want to know more about life with children with special needs? Take five minutes.
9 responses so far ↓
Chris // September 9, 2008 at 8:57 am |
Well, I guess we can chalk up their lack of smarts to age? No? LOL. Daniel, like all kids with special needs, to me, are just that: special. Sure, it’s darned hard, but I like to think that God picks only the most special of people to be parents or caregivers to these kids.
My son’s elementary school has a special education program and I just love it because all kids are intergrated together for all activities, recess, school functions, plays, etc. I volunteer there all the time and i just LOVE hanging with those darned cute kids. They are so the BOMB!
Oh, and by the way, Daniel ROCKS in those shades!
jen // September 9, 2008 at 11:04 am |
Great post! There are alot of people out there who, luckily, don’t have the insight into the life of a ’special needs’ kid and fail to even try to learn about the life they are and can live.
Last week, at the playground with Arianna there was another mom – a ‘coach bag with matching sunglasses’ type of mom… while I’m in my spit up stained t-shirt hehe. Her son was just 2 weeks older than Arianna but looked like he was AT LEAST 2 years older – he was just huge. He was running all around and going on ‘the big kid’ playground equipment while Arianna was struggling to even climb the steps on the toddler equipment. I still have to pretty much guide her around all the playground equipment – but of course, don’t mind.
Anyway… ‘coach’ mom started asking me about Arianna and started with the usual questions of ‘what’s her name’ and ‘how old is she’.
Then the comments started: “Wow – my son is the same age and he has no problem going up the stpes”… “She’s pretty clumsy huh?”… “It must be so nice to have such a petite girl”.
It stung, bad. I tried my best to be civil in my responses to her but eventually got fed up. Little does she know that my 2.5 year old has lost weight yet again for the 3rd consecutive month and will be wearing the same size 12 month clothes she wore last fall… and little does she know how much it pains me to know that her little sister will out weigh her at a year old and how much I can imagine that will affect Arianna’s self esteem.
But what hurt the most was that she didn’t even TRY to understand or empathize… didn’t even try.
The entire world should be that lucky I guess… but can you imagine a world without ’special needs’ kids in it? The compassion that Daniel shows is the reason why these kids are so ’special’ – we need them to show us how to win those awards too.
jen // September 9, 2008 at 11:07 am |
Oh ya, meant to ask… how does Daniel like the transitions lenses on his glasses?
We’re tempted to get them for Arianna but my mother’s experience with them leaves us a little weary.
At the rate she’s going through frames we’ll be looking at new glasses soon and I’m tempted with the sunshine in the winter here (the glare on the snow is something to be reckoned with!).
Laura // September 9, 2008 at 11:24 am |
daniel loves the transitions lenses because they are “just like dad’s”.
his opthmalogist wholeheartedly recommended them saying they were definitely to his benefit status post ROP Plus disease surgery.
Paul // September 9, 2008 at 11:55 am |
Wonderful post, Laura.
shonda little // September 9, 2008 at 2:42 pm |
My mother had a cousin with Downs Syndrome. I remember that my mother really had a bond with him and she would always say that, in a way, she envied this blessing in always seeing the world through the eyes of childhood. She would say that his envied his ability to always focus on what’s important. In other words, he wasn’t consumed with name brand clothing and material things. He was happy when his family was around and he was having fun. She would say he was closer to God.
And, for those girls, just like we have no guarantees for birth defects and what not, we also have no guarantees for physical health as well. We have no guarantees that our children won’t be drug addicts when they are adults. We have no guarantees they won’t be killed in a car accident.
I am not ready to have more children because I don’t want to be pregnant again, but no matter who the child turned not to be, I know the risk is worth the reward.
Diane Davis // September 9, 2008 at 9:33 pm |
it’s not often a blog makes me cry. the “it’s okay, friend” just reduced me to a puddle. he is amazing.
Jenni // September 10, 2008 at 8:17 am |
I agree with Diane. My eyes were welling up throughout your whole post, but when Daniel loved up his friend with those beautiful words, I lost it. What a wonderful gift he is!
Carnival of Family Life | Colloquium // September 19, 2008 at 11:25 pm |
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