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Loving the Unlovable

10 May

 

 

I read a blog post recently by another special needs mom I know.  She wrote about her child’s cheerful disposition, and how that helps shape her outlook on things.  I can relate to this – Maura is such a happy creature most of the time, and has such great reactions to things.  One Christmas, she entertained extended family with her sheer joy and excitement with every single gift, no matter how big or small.

It’s easy to be positive about life with a special needs child when they have a naturally cheerful disposition.

But something this mom wrote made me pause, and think.  And it has been weighing on my mind since reading it.

What she wrote was basically this – Because her child is cheerful in disposition, people want to be with her child, help her child when need be.

It is true, people always want to help out the nice kids, the happy kids, the easy kids.  The kids that don’t need as much of an effort from you.

Yet this truth makes me a bit sad.

Maura is an example of the type of child teachers and aides want.  First, she’s a girl, and in the world of special education, girls are the minority.  I’ve had therapists excited to finally have a girl to work with.  Maura is flexible in nature, easy to work with most days, and loves going to school.  Now, she does have moderate cognitive disabilities, which means she requires more input, guidance and supervision. She struggles with basic concepts, staying on task, cannot write, can read only things like her name, which she’s seen a thousand times.

At least she’s good natured about it.  And for that I am grateful.

She’s the child with the cheerful disposition people are happy to help.

But what about those who aren’t as cheerful?  The ones that struggle with sensory issues, who have no way to communicate?  The ones who can’t say “This bothers me.” so lash out instead to make their uncomfortableness known?  The ones who you have to chase down, who scream and flail?

The ones who people don’t really want to be around, don’t really want to help.

If you’re lucky, you get that amazingly dedicated person who sees the child you love.  The one who sees the struggles your child has and is as desperate as you are to help them through that struggle.  The one who greets all her students with the same sincere smile, because she cares about them all equally.

Maura has had a couple of these teachers.  I’ve seen them love Maura lots, and love her more difficult classmate just as much.  I’ve seen them deal with frustrated flailing children and never blame the child for acting out – instead, they say “Oh, it must have been something I did, I missed, I should have known better than to do that around them.”

It is refreshing.

I’ve also seen those who inwardly recoil from the more difficult, less cute child, or give them less attention.  I’ve seen Maura treated with less patience when she was the taller, awkward, more needy student than her smaller, more capable classmates.  And yes, it stung.

But I know that others have dealt with much worse.

I’m finding it hard to put things delicately – it’s easy to talk about being positive when you’ve had positive experiences.  When your child is the one people are bending over backwards to help out.  Because it’s easy to help them out, and then you leave with a warm fuzzy feeling for helping said child in need.

Yet in the corner is the other child – the difficult child.  The one who tantrums and throws things.  Who doesn’t like to be touched, and may be a bit smelly because they’re not toilet trained just yet, or because of chromosomal issues, looks odd or can’t move easily.

A therapist once told me how when you have a child who doesn’t talk, you find yourself not talking to them because you don’t get that input back from the child.   I’m guessing that sort of thing plays a factor here – you’re less wanting to help the more difficult child because you don’t get that positive feedback.

Except these are the children who are in desperate need of help, of positive people intervening in their lives to help them out.  They need the help too, just as much as the cheerful child.  Maybe even more so.

More than the child, their parents need more support as well.  They are the ones in the trenches, day in, day out.  They are their child’s “safe place” and sometimes bear the brunt of the frustrating day.

And they love their child, as difficult as they are.  They love their child fiercely, in a way that most of us cannot begin to imagine.  Because they know that their child is one of the ones that are harder for the general public to love, or even like.  They’ve been told that their child is just spoiled, needs beating, is being a brat.  They’re told that they are the cause of their child’s ill behaviors, that they are bad parents.  Their child is the one the teacher doesn’t want to have, the one the other parents don’t want sharing a classroom with their own child because that child might be disruptive.

Their child doesn’t make others feel good.   Their child is the one no one is rushing to help.

But I know their child is amazing.  Their child is just as deserving of my help as any other.  They deserve your help.  Their parents deserve your help as well.  Being a special needs parent is hard enough – when your child is one of the difficult ones, that makes it harder.  You can’t get out easily.  It’s very hard to find a sitter.  You can’t socialize with parents much.  Other parents may steer clear of you, thinking they’re being respectful, giving you space, when inside, you’re desperately hoping for a friendly smile and “Can I help?”

Anyone can help the cheerful child.  But those who cheerfully help the difficult child – those are the people who I really admire.

 

My shirt from Sevenly, which inspired the title of this post.  Sevenly.org helps charities fundraise via some awesomely designed tees.  This particular shirt helped Reece's Rainbow, a Down Syndrome adoption ministry

 

 

My shirt from Sevenly, which inspired the title of this post. Sevenly helps charities fundraise via some awesomely designed tees. This particular shirt helped Reece’s Rainbow, a Down Syndrome adoption ministry.  Check out Sevenly for a new cause every week!

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14 Responses to “Loving the Unlovable”

  1. noangeilli May 10, 2013 at 6:25 pm #

    This post made me cry. To know that there are people who understand how the parents of the difficult child feel is so wonderful. My son was the one who prompted daily calls home from the teacher – never a positive comment from most of them, although, the few who found the good things in him and called about those are forever in my heart! My son was the kid who looked perfectly “normal,” who could “fool” most people who only saw or dealt with him for a couple of hours or a couple of days into believing that he was “fine” and that we were making stuff up about him. He was the kid who prompted parents of neighboring children to show up at my front door with comments like, “Is there something wrong with your son?!” – to which I typically replied, “Yes, there is. Would you like the long story, or would you just like to tell me what he has done and how much I owe you?” My son is the one who made it in most daycare centers for about a month before being kicked out. He’s the kid who was placed in general education classrooms, self-contained LD classrooms (although, his only learning disability was math – he hated it and never really got it – along with behavioral issues), self-contained Emotionally Handicapped classrooms, collaborative classes, inclusive classes, public school, and private school – and none of them ever really met his needs and he never seemed to “fit” into any of those environments academically.

    Your comment “They’ve been told that their child is just spoiled, needs beating, is being a brat. They’re told that they are the cause of their child’s ill behaviors, that they are bad parents” seriously struck home with me. Even members of our family said these things to us. It always drove me nuts when they started telling me that we just didn’t discipline him enough (if they only knew!). Once these same family members spent extended amounts of time with him, suddenly they saw that maybe we WEREN’T crazy.

    The most frustrating part of the whole thing was that no doctor was ever able to give us one, specific diagnosis. We were told that he had ADHD, ODD, and symptoms of Tourette Syndrome, Bipolar Disorder, OCD, and many other alphabet combinations and emotional and behavioral disorders. He was treated with multiple combinations of medicines as well as behavioral structures and weekly visits to psychologists and psychiatrists. Just when we thought we had a handle on how to deal with the most “severe” of the symptoms, things would switch up, and we’d be on a new roller coaster.

    My son is now almost 23 years old. He has come SO far! And, thank God, he is a resilient kid who keeps trying to make it. Don’t get me wrong.. he struggles on a daily basis, especially with keeping a job (with the employers never knowing that he has legitimate issues – he refuses to make himself “different” in that way – he would rather tough it out and possibly lose the job and try again with another one.) But, he keeps trying, and he has hope. And, that gives me hope for him that he will eventually find his niche. He’s a wonderful young man with an enormous, giving heart. And, my sincere hope for him is that he someday finds a young woman who sees this and loves him for it and a boss who sees this and knows how to use it to his benefit in the workforce.

    I’m so sorry for the long post! You just struck a chord with me today. Thank you for this post.

    • phoebz4 May 11, 2013 at 6:03 am #

      Thank you for sharing your story! And I know with kids like ours, there is no “short” version, lol! Your son sounds amazingly resilient, and I truly wish him the best – I know there will be others out there reading this and given hope from your story.

      • noangeilli May 11, 2013 at 12:18 pm #

        Thank you for continuing to share Maura’s and your family’s story. Your blog always reminds me that we are all in a “special” family. 🙂

  2. Wendy Carroll May 10, 2013 at 6:40 pm #

    Wow. So true. So deeply, tragically true.

  3. Nancy Spivey May 10, 2013 at 6:44 pm #

    No need to put it “delicately”. Most of us are guilty to some degree. It’s like when you pass a homeless person who is talking to herself and flailing her arms, you cross the street to avoid her.

    But no less sad. All humans need love and caring, and from your blog, Phoebe, I think I am becoming a little more compassionate, and I thank you for that.

  4. specialneedsrealitytv May 10, 2013 at 11:14 pm #

    This is so true. But there are some teachers out there who love the difficult children. I worked with students with autism and students with emotional difficulties and I loved the challenge. I know there are teachers out there who can’t stand the no- easy-to like kids. This is one of my pet peeves: get the heck out of the classroom then. That’s not to say that there are certain students that I have not liked. As teachers, we do come across kids who we just don’t like but then it is part of our job to never let that kid know it. My first special ed instructor used to say: “It’s not what you know, but who you are” when it comes to teaching. In a happy coincidence, my son now attends the school where she’s the director. Lucky me!
    Once again, you’ve made an excellent point about meeting the needs of all children. Well done.

  5. sleepymotherof4 May 11, 2013 at 9:34 am #

    Your post made me cry. You described my daughter. And I have been very lucky to find 3 amazing psw’s who see my daughter the way I see her. Thank you for your kind words.

  6. Maria.Joāo May 11, 2013 at 9:53 am #

    I love reading your blog, I’m portuguese and psychologist and work with adults with intellectual disabilities and theirs families. Obrigada, thank you. Maria Joāo

  7. kirsteen May 11, 2013 at 12:26 pm #

    Thank you Thank you. Once again, you brought me perspective. Im an SLP, and yes, I agree with all you said. Before I was an SLP I was a preschool teacher. I was very lucky to have a mentor who taught me to find one thing I liked about EVERY child. Even if it was, I like how they have green boogers every day 🙂 (humor!!!! so important). It has made such a difference, because after all, I am human. I dont like/am not attracted to every “typical” person I meet. But I still need to treat all with respect.

    thank you.

  8. Sharon Weidemann May 11, 2013 at 1:30 pm #

    Aaaah… today you’ve talked about my child. She is a nonverbal severely learning disabled child with Fetal Alcohol Syndrome, in the autism spectrum somewhere, and has developed intestinal failure that leaves her being plugged into iv fluids 18 hours a day. To say she hates much of her life, is to say it mildly. Her sensory issues leave her a train wreck in many situations: leaves her attacking her safe people bc something has her scared out of her mind & overwhelmed & she can’t explain what or why & at times we just can’t figure it out.

    Sara is adopted & my other 3 biological children are incredibly amazing with her. They have empathy & compassion for a little girl that most people just aren’t sure what to do with. What it has also done is grow my kids into outward focused individuals who looks for those in settings that don’t seem to fit in & my kids seek them out & love on them. My kids are my heroes. I can only imagine that they are going to do something in their careers that take care of the people that our society is still trying to figure out what to do with:)

    Thanks for thinking of children such as ours.

  9. Carissa Johnson May 12, 2013 at 11:27 am #

    I love this post, such a good reminder to be better than those all to human behaviors….I would add, as a parent sometimes (as much as one does love their child) it is hard to be patient with your difficult, different, more needy and maybe non-communicative child, just as a teacher or therapist would struggle….and the extra help or just plain thoughtfulness of others helps so much in those times when one struggles to be the best parent they can be….

  10. lexiemom May 13, 2013 at 3:12 pm #

    This makes me think of a friend of mine whose two daughters both have a very rare genetic metabolic disorder. Her oldest cannot speak many words, and has trouble communicating, but her mother understands her, and will help her express herself to others. Her second child is able to talk and has a better vocabulary, though only on about a 3 to 4 year old level. Neither of her girls is toilet trained, nor do they eat (they are fed a special “formula” through a stomach tube). These girls’ condition is extremely rare, and no one with this disease has ever lived past 5 years old before. Her girls are now 17 and 12.
    The oldest is very sweet natured, but because of her difficulty communicating, not many people want to interact with her. The youngest is a pistol! She’s red-headed & has the tempter to match! Though she is a pre-teen, she doesn’t know she’s not 4, and wants to play with other much younger children. She doesn’t know her own strength, however, and is often too rough. This makes it difficult for my friend to find a helper for her as well. It grieves my heart because I know their parents could use a break now and then, but they don’t have much help. She once told me that someone at church told her that she should not bring her children because they were too disruptive! Really? To Church? Who is that hard-hearted?
    Her girls have grown out of the cute & small baby stage, and are in the developing young woman stage, and now working with them is more difficult. It seems people sometimes treat others like pets. Once they’ve outgrown the “puppy” stage, they become work. My heart grieves for my friend because she has no support system. Her mother died a few years back, and her father is in poor health. Her husband helps, of course, but he works and is gone a lot. Her friends do what they can, but I know it can’t be easy without others who share her struggles.

  11. allovus1 May 15, 2013 at 3:07 pm #

    xxxxxxx

  12. My Dance in the Rain July 2, 2013 at 5:16 pm #

    Thank you for your honesty, sadly what you say is so true. The world is an unfair place, the majority of people are always looking for the easier route the one that takes less work. Ultimately our SN community ends up paying the price.

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