Accepting the Truth

Friday afternoon I ran into a woman and her little boy, 4 1/2 years old, just like my little Henry, 4 1/2.  Her son was excited to see Henry because he saw Henry’s two bright blue hearing aids. This little boy, we’ll call him John, wears one.  He has normal hearing in his right ear. 

It’s amazing how much you can learn about a stranger in a five minute conversation.  This woman and I have vastly different views on a number of things, from cochlear implants and hearing aids, to the school systems, to the way we view our boys.  Because her boy has normal hearing in one ear, our situations are different, but it is always good to meet a mother who know a little about hearing loss and the struggles associated with it. 

We got on the subject of FM systems (which are basically microphones that a teacher or other adult will wear to pipe sound directly into the hearing aid), an accomodation which is commonly used for hard of hearing children in our county schools.  I told her that the school provides them for the children to use, and that she could have it written into John’s IEP when he enters school. 

Because John didn’t qualify for services, she didn’t think he would have an IEP.  I told her that my Henry also had age-appropriate speech and language comprehension now, but that he qualifies for services simply due to the fact that he has a disability. 

“You see, I don’t think of John that way” she said.  And though I know she was not trying to be hurtful, for some reason it felt like an insult…that I had just used a dirty word to describe my son.  That the term ‘disabled’ meant the equivalent of damaged goods.  She approached me because we had something in common, but it seemed now like she was trying to put some space between us, because we were not the same.  Because her son does not wear the disability label that mine does.   

It reminded me of myself when Henry was first diagnosed as hard of hearing, and how I couldn’t wrap my arms around the idea that he was disabled.  We lived for two years thinking he had not a problem in the world, and then all of a sudden we find that we have a hard of hearing child.  Even still, it is hard to think of him in those terms.  Because on a day to day basis, if you’re watching from the outside, he is just like all the other boys. 

I remember thinking that my son was hard of hearing, but didn’t have a disability.  I didn’t want to admit it.  I didn’t want to accept all the ways that raising a child with a disability would change my life.  I didn’t know anyone with a child with a disability.  I didn’t know anything about this club, and I didn’t want a membership.  I wanted what everyone else had.  I wanted “normal.”  I had just been through months of struggle with my first son, and wasn’t ready for another struggle, let alone a lifelong struggle.  So I tried to deny, for a while, that I would have to deal with it. 

I remember listening to his speech grow, his comprehension increase, and thinking he’ll be just fine, you wait and see.  And yes, he is just fine.  But he still needs help, accomodations, repetition, focus. 

I remember that every time he mastered a task, another larger, more complicated task lay ahead.

And I slowly began to realize that this hard of hearing business was more than something that we could just work hard on and conquer.  It was something that we would live with, that he would live with, forever. 

And as he gets older, I continue to grow in understanding the disadvantage he is at when compared to other children. 

I understand that he doesn’t pick up the incidental language near as much as my other children did…he needs to be deliberatly taught.  And he needs repetition.   

I understand that the complexities of the English language will trip him up as he gets older. 

But I also understand that he is smart, and that he will make it. 

He will be just fine. 

But he’s going to have to work.  

Because he does have a disability. 

I can say that now, and believe it, and love that about my Henry.  And I embrace this club I’m in.  And how dearly I love it’s members.

About kristenkj

Laundry is my nemesis. And also dust.

14 responses to “Accepting the Truth

  1. What a beautiful and touching post!

  2. What a lovely post. It IS hard to come to terms with your child’s disability. It’s funny, when Pip Squeak was smaller and we spent most of our time in therapy, his cerebral palsy was sort of the center of out universe. Fast forward several years and I really don’t think of him as disabled most days. Of course he still has CP, but he’s just Pip. He is who he is. He’ll be fine, but yes, like you said, he’ll work harder than some.

    I wonder, though, about the child and mom you met…if she’s not willing to think of her son that way…is he going to get the help he needs in school? It would be sad if he couldn’t hear his teacher well enough because she doesn’t want him labeled.

    And finally, OH the red hair!! I love the hair. So gorgeous!

  3. Amy

    I have two kids with bilateral cochlear implants, also. My 7 year old does not have an IEP, and until there comes a time when he need one, we will not use one. He was age appropriate expressively and receptively by age 3, so before he entered preschool. I do not anticipate my 2 year old using an IEP any time soon, as he is also age approriate.

    Some parents choose to not utilize an IEP… just because it is available (which is a good thing) doesn’t mean that one needs to mess with the paperwork, the teams of professionals or the assistance. I prefer to allow those funds to be used for those who need them, and we will avail ourselves of it if and when the time comes.

    For me, it’s not because I don’t understand or accept that my children were born deaf, but I realize and recognize that independence, when possible, is a good thing. I wonder if you assumed a lot about her– that she hasn’t accepted her child’s hearing loss or that she is ignoring his needs. Hopefully not. It’s easy to take something the wrong way, and perhaps she just misspoke.

    It is wonderful that you accept and love your child for all that he is. We do, too. Our refusal to be part of the “system” has nothing to do with lack of acceptance and is all about potential independence. We hope to teach our kids that they can do anything, and not to ask for govt. assistance unless one truly needs it. Keeps all of our taxes lower! :-P

  4. Amy, Wow. I think you read a lot in my post that wasn’t there, and that wasn’t intended to be there. I for one, am all about independence, personal responsibility, and NOT relying on government for my needs. I have paid out of pocket for private therapy to supplement what we have gotten through the county.

    My post was about me, and how I reacted to first finding out that my son had a disability. And how I changed. How I came to understand what his hearing loss is all about, how it affects him, how he learns, his social skills, the way people interact with him, etc. I started off the post with that story about meeting the woman last week, because that is what got me thinking about how I used to be. Like I said in the beginning of the story, her situation is different than mine. I didn’t presume to know then, and I don’t presume to know now, whether or not she is doing the right thing for her son, or whether she is ignoring what he needs. I don’t know anything about her son, or how he is doing, or what he does/does not need.

    Please understand that if there is one thing I have learned throughout my life as a mother, it is that there is no one “right” way to do things. And even within families, there is no one right thing. Different situations, different children demand different things. You make decisions based on what you think is best for that particular child at that particular time, with the knowledge and advice that you have.

    I hope you can reread my post with the idea that I was talking about me. It really does make a difference.

  5. Amy, thanks for sharing. I especially love what you wrote in your comment section– about no one “right” way. This is definitely a journey. :)

    I’m looking forward to reading more.

  6. Beautifully written! Your post made me cry. You’re a beautiful writer and a wonderful mother.

    I struggle with the labels too. When I see “developmentally delayed” on Thomas’ IEP. Its hard. But at the same time, I will take any services the school system will offer me. Because that’s what we have them for and why not make our children’s lives a little easier but offering them as much access to support as possible?

    Anyway, I loved your post Kris. Beautiful. And I love Henry too.

  7. This is a beautiful post. We are all uniquely-abled, aren’t we? And our weaknesses become our strengths in time. I too did not want to say that word – d.i.s.a.b.l.e.d. – and it’s not a label like some think – it’s a term to put our hearts on special notice. Pay attention! Be intuitive, heart. Be understanding. Reach out to this person rather than the other way around. Love big. For better or worse, that’s what we call it – a disability. Embrace it … I love that statement. I care for a young man whose disability is complex and crosses many realms of his being – physical (mild), mental, emotional, behavioral, then into his social world, on and on. And I love him dearly for all we’ve been through. I can’t understand why his parents and step-parents had such difficulty – they couldn’t embrace his disability and fought it all the way, I suppose. Had they done so, he would not have endured the psychological scarring that snags so many disabled persons, making their plight all the more difficult. You’re doing just fine, Kristen! Sometimes we need to hear that, don’t we?

  8. We’re all doing the best we can. You are doing an amazing job. Henry is a sweet boy who I look forward to see grow up. He’s can teach us all a thing or two. Love him!

  9. I am a teacher, but now I am a stay at home mom. When I taught, I always had a child with some sort of disability, whether it be Asbergers, Diabetes, Autism, something, that made me take a step back, watch these children grow and become amazing individuals, and realize, they overcame their challenges than I did for them in the beginning. I was scared to take it on. They taught me. They amazed me. More than any other student of mine ever has.

    Now, I have a deaf son. No response to ABR’s. Seems to be getting response from his hearing aids. He does have a disability … but we love them no different right!!!! And he gives me more strength than I could ever imagine! HE AMAZES ME! ALL THE TIME … all I know, is he’s mine. And I’m proud. Wow … what they teach us!

  10. Oh Kristen,

    you said that all so well! I feel like you’re telling my story too. My son wasn’t diagnosed until 3.5, and I was very distracted with his older brother’s “issues”. Didn’t seem like Tate’s hearing loss was any big deal, because he was coping so well.

    You warmed my heart with what you said about first not wanting to “be a member of this club”, but have embraced it and love the members. Amen!

    Henry is lucky to have you :0)

    Julie

  11. Rebecca

    Hi Kristen,

    I find myself checking in on “No Small Thing” to see how you all are doing often. I love the back to school updates, and WOW – how David has changed since I last saw him – I never did notice just how similar he looks to a Mr. Potato Head – do thank Ella for the giggle for me :). But about this post – Kristen, your descriptions of your journey with Henry are incredible – in this and other posts! As well as your journey with William (I had no idea – what an amazing journey you’d been down pre-Henry)! I’ve said it before and I’ll say it again – Henry is so so lucky to have you and there are so many parents out there who I know could benefit from your insights and honesty about the journey. You really should consider authoring a book for other parents to turn to – you truly have an amazing talent for putting into words the journey you and other parents of disabled children go through!

    Henry’s disability has not handicapped him because of all your hard work and love and you should ALL be so proud!

    Hugs to you all,
    Rebecca

  12. Let me tell you that there are a lot of cheerleaders on the sidelines rooting for you and Henry. As a teacher, I sometimes think that there are more IEP’s in my classroom than “regular” kids. Most people just don’t talk about it. But you’re definitely not alone. And we are happy to provide as much help as possible. Having parents who are willing to get involved makes such a HUGE difference.

    I’m cheering for you!

  13. Mindy Zellner

    Hi Kristen,

    I am Kelly’s roomie from college and we have emailed back and forth several times. I found your blog through Kelly’s, and I was actually moved to write to you after this entry.

    Even though it was not a focal point of your entry, I just wanted to add my two cents about IEPs. IEPs are a wonderful tool, and I also had one through my years in school. It did eventually get to a point where I wasn’t receiving any services because I had “caught up,” but my parents chose to renew it every year to ensure that any services I may need could be provided. This was actually recommended by the school district. As you mentioned in your response, my parents also paid for many hearing aids and services out-of-pocket so it wasn’t a matter of financial reasons either. IEPs are just another tool in your toolbelt to help Henry be successful.

    While my parents recognized and embraced my hearing impairment, they never allowed me to use it as an excuse. They held me to the same standards and expectations as my siblings. To this day, I credit them with my success and am a normally (whatever normal is! :o) functioning member of society. I have a family that I adore including three kids who are all of normal-hearing, a job in a fantastic public school, and other than a minor nasally tone to my voice (which a lot of people attribute to a foreign accent) one would never guess that I have a disability.

    Henry is blessed to have you as a mom. From your posts, I can already tell that Henry is going to grow up to be a heartbreaker with that red hair, his comments, and it is obvious that he is already a happy, little boy who just happens to also wear hearing aids…

    Keep up the great work!
    Mindy

  14. What a beautiful post. I love your beleif in your son and the way you acknowledge his disability in such a loving, positive way. This is inspiring, and I’m sure will give many others just the encouragement they need!

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