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I talk about Autism, a lot

I Hate That You Are Surprised That We Are Happy

9/7/2013

19 Comments

 
Picture
Sometimes it makes me cringe when people look at Alex and I like we are doing something special. I don't mean the kind words that you leave on this blog because they are appreciated beyond imagination. I mean the times when someone looks shocked that we are functioning and functioning well. Let me explain. Kate is not hard to love. It is the easiest thing in the world. So, often it bothers me when people are surprised at how hard we work for her and our family or how we are generally not that stressed out.  (I am definitely more stressed about the Red Sox post season looming, considering their collapse last year, oh and our new cat "Bill Bailey" is a righteous dink, so that is a bit stressful, too)

Kate is a pleasure. She is not a burden. She is not a problem. She is as special to us as any child is to a parent. There are days when parenting is hard. I know that is true for all of us (except a handful of Pinterest moms who DO NOT EXIST). But, please understand that we have never and will never look at Kate as anything more than the most perfect little Kate in the world. And if we are being honest let's look at this situation with priorities in place.

I have said it before and I will say it again:
 
I said AUTISM not CANCER or DEBILITATING or FATAL.

I said she flaps, jumps and spins when she is happy. I did not say she cannot walk.

I said she does not like to look into people's eyes. I did not say she could not see.

I said she is sensitive to sound. I did not say she could not hear.

I said she struggles to talk.  I did not say she struggles to breathe.

I said she is not sure how to play. I did not say she is too sick to try.

I said she attends multiple therapies every week. I did not say we could not afford her care.

I said she might live with us forever. I did not say she had nowhere to go.

19 Comments
Kathy Doiron
9/6/2013 08:28:06 pm

I don't know your family (although I would love to,) but I can see why people think that you're 'something special.' As a teacher, it breaks my heart to see how many parents have lost sight of the fact that it is their job - first and foremost - to love the children God has placed in their care: ALL of the children - the so-called 'normal' children, the supposedly 'special children' (Aren't all children special?) the children who come as surprises, the children who come after anxious waiting, etc. So I, too, think you're all pretty spectacular, not because Kate has Autism, but because you are clearly a family who has their priorities straight. By the way, neither of my adult children want children, so I'm looking for surrogate parents for grandchildren. :)

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Shanell
9/7/2013 09:18:53 am

Thanks Kathy! You sound like you'd make a phenomenal Grandma. You know, Kate would you hug you all day long, but if you are really looking for some cuddles you should go rock babies at the NICU (They take volunteers to rock those babies that have no one :(. I have often thought of doing it myself. I am just afraid I would want to take them all home.

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Nicole link
9/6/2013 09:17:24 pm

You've hit the nail on the head! Good job on articulating what most,if not all of us, feel

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Shanell
9/7/2013 09:19:25 am

Thanks Nicole, sometimes people don't know how lucky we are.

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Sara
9/6/2013 09:53:09 pm

Well said....you're so right. And, Kate IS a pleasure, and so easy to adore. I know I adore her, and Grace, equally, because they are both sweet, funny, adorable little darlings. No surprise there :)

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Shanell
9/7/2013 09:19:58 am

:) Sara. Kate does love a good Sara cuddle.

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sandy surette
9/6/2013 10:02:40 pm

well said .your girls are both wonderful girls who are sweet adorable and so much fun!your words are ones I feel everyday with so many of the wonderful parents i am fortunate to know

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Shanell
9/7/2013 09:20:26 am

Thanks Sandy. We are lucky to have learned so much from you!

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Lucy LeBlanc
9/7/2013 12:48:40 am

Shanell, I am sitting here with tears in my eyes and wishing ALL parents would read this post and realize their child may be having some difficulties but they are still easy to love. Each child is perfect in their own way. They know how to be the best at who they are and should be loved for that and not compared to other children. My friend, I think you have found your calling and should be doing workshops with parents. Love the picture you have included in this post. It shows the love and joy Kate brings into your life. I am proud to be a small part of Team Kate. Hugs and love to you all.

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Shanell
9/7/2013 09:21:09 am

Small part? No way! You have been here since the birth of this blog and you are always going to considered first string on this team!

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Steve O'Brien
9/7/2013 07:16:00 am

I would echo all of the above comments. I have known you a long time Shanell and I have no hesitation in saying that you have blossomed as a "special person" since becoming a wife and mother. I have said that parenting an autistic child is a crushing burden - and I believe it is. What makes you and Alex so very special is your committment to Grace and Kate - on their terms- knowing that the responsibilty is pretty much 24/7/lifetime.But beyond that you have made it your mission to reach out to caring people everywhere to educate them about these wonderful kids and to other parents of autistic kids who are suffering and bewildered and alone. Some may not survive the experience and their children depend on them so much. There is now a new light (Team Kate and the blog) that they can turn to ; if for nothing else, then just to know that they are not alone, not bad parents, not crazy, and not cursed but blessed. I hope you will understand that I believe you and Alex have reached your potential as good people precisely because of Grace and Kate. I believe that the only true happiness on this Earth happens when we do service for others- not when when we fall in love , although that is part of it; not when we gat the suburban house and white picket fence; not when we receive accolades for our work. The only truse and lasting happiness is in service to your fellow human. Just ask Bill Gates and Warren Buffet who have every other measure of happiness possible but have placed all their material assets at the disposal of Third Worldpeople.

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Shanell
9/7/2013 09:26:47 am

Thanks Uncle Stephen. You always say the nicest things. You write so well, too. You should write! or teach. Maybe you do. You're exactly right. This is easy because I get more from helping our girls than anything else life could offer.

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Alexandra
9/10/2013 04:48:54 am

This is possibly the best blog post I have ever read and I am going to bookmark it so I can look at it every time I feel a little overwhelmed or start to care what other people think. Thank you.

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Shanell
9/16/2013 10:20:12 am

Wow, that is high praise. I thought you might even be spam for a second because it was such nice thing to say. Thanks :)

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Emily
9/12/2013 11:41:49 am

THANK YOU for this post! I recently saw the story, as I'm sure many have, of the family with the child who has epilepsy and is non-verbal. Their dinner tab was paid for with the note "God give special children to special people." (I might be paraphrasing slightly) I thought it was a wonderful sentiment, and I'm glad that it made the family's night a little easier when they were struggling. At the same time, as you said, parenting is hard sometimes, for everyone. Does autism present certain challenges to us that parents of typical children don't face? Absolutely. But I love being a parent to both my children, my newborn, and my 6 year old who has autism, with all the challenges and joys that we all experience as parents. In reading the responses to the above story I mentioned, several people expressed their gratitude for their healthy children. Isabel had a seizure this summer for the first time. That was something to be devastated about, and we were devastated and terrified. Thankfully she has been on medication since and has not had another seizure. So I am thrilled to say that I'm grateful for my healthy children too. Every day.

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Shanell
9/16/2013 10:21:33 am

Thanks for sharing Emily and I have a feeling Mary is right!

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Mary Alterman
9/13/2013 02:23:02 am

Emily, You and your beautiful family are always a joy to be with (and I can't wait to meet the newest member). Thank you for your commitment to family!

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Tracie
1/16/2014 05:37:01 pm

Hiya!

I just found your blog the other day via a friend. I have to say, I absolutely love your honesty and humor. This post actually really hit me.

See, I live in New Zealand and work as a Teacher's Aide/drama instructor/ukulele instructor for special needs kids, specifically autistic (lots of titles which means I spend a lot of my time running and talking/singing very loud. needless to say I gym regularly and drink lots of tea/caffeine).

I can't tell you how many times when talking about work with friends (okay, granted my work stories involve more poo stories than theirs and I show up to pubs with a random splotch of food or paint on my shirt without thinking about it), their response 9 times out of 10 is "Wow. I don't know how you do it. I couldn't, you'd never see me in your job"
which is a little insulting honestly! Sure, there are days where I crash into the couch for a long nap after work, but I love the kids I work with! There's also the assumption from that there is something "wrong" with the kids. They aren't sick, I'm not going to catch anything from them (unless they have a cold...). In fact, some days are brilliant when I get to see them perform a play we worked on for months, or when they get a not right on the ukulele (some days just getting them not to go Pete Townsend on a Uke is an accomplishment!) or even when I get to spend an afternoon making playdough dragons.

Thanks for setting up a lovely blog about autism. I'll keep reading! And I adore Kate's letters, so spot on! cheers!

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A worried mama
1/20/2014 11:00:46 am

I needed to read this lost today and the amazing comment your Unvle Steve wrote too. I have worked supervising ABA programs for children with autism for the last 10 years and now with the birth of our 2nd child who is merely only 9 months old I carry the worry that only parent who have gone through the same can describe. I see signs that I want to ignore but can't. I sit here wanting to give all my knowledge away and be blissfully unaware. I am the support for all the families I work with, who do I turn to for my support? Logically I am so eternally grateful for the years worth of knowledge I have, the ability to do free therapy with my own child.. But I needed to read this post & that comment today, all the things I have preached that I must learn to live. I can do this. I will do this. My child is perfect the way she is. I will learn to grow and be a better person, mother and wife. When the worry gets overwhelming I will come back to this post again.. Thank you thank you thank you

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