daily Hazel #55

Somehow, some way she will grab a hold of one of those birds circling above her!

compassionate responsibility

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.