Having a Child With Special Needs: How It Feels

posted on: 9.04.2013


Well, that week turned into a couple months didn't it? Sorry about that. I suppose a week follow up to the first post was a lofty goal considering I was leaving town for a month. I am so glad I waited though, because something fell into lap that I know was meant to, and it has completely helped me pinpoint, or rather, articulate how a very big part of me feels about Tuck being a special needs. It was shared with me by a mother who lived in my old neighborhood who knows just what I'm feeling.

To my very core, this story is true for me:

WELCOME TO HOLLAND


by
Emily Perl Kingsley.
c1987 by Emily Perl Kingsley. All rights reserved
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Every time I read the line "everyone is busy coming and going from Italy" my chest hurts. That line is the most painful for me. " It's all the things so far we haven't been able to do, or have to do every day, because of it, while everyone else's life moves on, most people never knowing what's going on. I'm still working those feelings out.

For me, Holland has looked a little like this:
Milestones come and go without being reached. Feelings of guilt when I cheer Finn on for the milestones he's reached.  Being confused by how two can grow inside me, but come out so completely different, and how will they both make sense of that when they grow up? The pain from the classic, yet once naively comforting, statement made by all mothers of older twins that it's so nice when they're this age and older because they always have a built in playmate. I smile and nod to avoid the awkwardness that would occur from telling them that mine actually don't play together, at all. It's doctor appointments, and therapy sessions, every single week. Knowing that I've lost potential real, and lovely friendships because I just don't have the time (and sometimes the mindset) to properly nourish them. If you're one of them I'm truly sorry. It has completely shut me down socially. It's the strangers comparison of the boys size, with an emphasis on how big Tuck is. Followed then by a pause, or wrinkled eyebrow, since he is clearly physically behind Finn also. It's filling out the preschool checklist form that gives 1 line to explain any specific needs your child has and writing "flip over". It's seeing other kids his age play together, laugh together, and him play alone. Especially laugh together. Especially when it's Tate and Finn, who have now become extremely close. It's the anxiety, already, that he will one day be teased. Oh, how my heart hurts already for that day. It's making sure every part of your house is locked/child proofed because Tuck still can't comprehend simple commands (like anything), and also doesn't have a sense of danger (example: would walk off a cliff). It's thinking of those carefree days you used to have and missing them intensely, being angry about things, then feeling like an awful mom for feeling those things, all of which are crappy feelings. Holland looks like this a lot of days, and lately especially. It  has it's seasons though, like any place.

It's good seasons are like this:
Knowing that I am the sole person in his life that he completely depends on, the one he prefers.  Tuck is a mama's boy, and I don't think there has been a nap or morning where he hasn't greeted me with his giant grin. Amazing to watch such a little person be sick so much and still be so happy. Seeing the amount of excitement Tuck gets from putting a cowboy hat on my head (over and over again) is worth sitting on the basement floor for. Simple joys, all day. Or when a new game of placing oranges in a bowl is so much fun that clamping your fists and holding your breath is the only way to express the joy of it! Goodness, if I could bottle some of that up for myself. Perspectives are put in order, stacking of blocks for the first time calls for parties, nothing is taken for granted. Tuck works so hard and with gusto. Sometimes 20 minutes at one task. Such determination! It's his mad cry around 11 or 12pm, and we know now it's only because he wants to be held for a bit. He woke up and missed us maybe? Every single night. That's a great feeling.

But at the end of the day, after a real crummy day, when all my kids are in bed, and I can finally sit down and sink into my thoughts, I try to smile. I smile when I think of Tuck's giddiness just from bouncing on the trampoline, or simply running down the driveway. I smile when I think of how many times he tried to put the cowboy hat on my head earlier that day. Being in Holland isn't only about seeing these tiny moments and making them big, it's about taking the big picture and making it real. It's knowing that all those tiny moments happen and make me smile because they're teaching me, and refining me, and teaching our entire family. If I can learn small things from Tuck as our life goes on, really learn from them, than I think I will have lived up my time in Holland. It's hard to live it up always. I'll never live it up always, but I'm learning and trying.


* A little update on Tuck: Tuck physically is doing pretty well, and hasn't been too sick this summer. He is starting with new therapists this week, and I've scheduled appointments with all new specialists here in Indiana. He's having some mental/behavior challenges that are new to us all, and have been very challenging, so that is the immediate battle. I'm really hoping to get some answers and help soon.

25 comments:

  1. love this! such a neat outlook- and he is such a little stud ps ;)

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  2. Thanks for posting this. It made me cry. We have unexpectedly landed in Holland twice. What a ride:) I share in so many of your thoughts and loved hearing it put so eloquently into words. Thank you! Hang in there.

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    1. Sorry to make you cry:( Landing in Holland twice is a big gulp to swallow, I'd love to hear more about how you cope and find peace with it, if you care to share? Thanks for your kind words! xo

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  3. Chels...my heart is bursting with love for you and your little man tuck. He is so special and so so lucky to have you as his mommy. I can't imagine what it would feel like to land in holland but you have inspired me to be a better mommy. I am grateful for you and your raw truth. I am constantly in awe of you and your strength and honestly. Love you and your sweet family.

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    1. Thank you Melissa! I feel so lucky to have met friends like you, especially later in life. Your kind words mean so much. Miss you, xoxo

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  4. Beautiful, thoughtful and intimate post Chels. Tuck is so lucky to have you for his mama! You and your beautiful family are an inspiration. xo

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    1. Sweet Kim! Inspiration feels vastly overstated, but I know you are too sweet to say anything less, so thank you. Really, I am just getting by like the rest of us. I always appreciate you stopping by here to say hello or leave a thoughtful comment. You're the best!

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  5. Thank you for your thoughts. I have twins myself and that is difficult enough. My son is a bit delayed and his sister is quite ahead. I get frustrated when passerbyes make comments. I can't even imagine what it must be like for you. You seem like such a great mom. Tears filled my eyes when you talked about the line that people come and go from Italy and tell about their experiences. You are an inspiration to us all and I hope I can make my Holland as beautiful as you have made yours.

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    1. It's nice to hear when people can relate, especially with twins. Thank you for sharing, and for your caring words. I'm sure your Holland is as every bit as lovely as mine!

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  6. Excuse me while I blow my nose. This is so beautiful Chels!! I LOVE the Holland analogy. I have heard it once before and feel that I too have landed in Holland with the way my family has come together. I doubt there will ever be a day that others speaking of their "Italian" experience, doesn't ache just a little. You are exactly the Mom that Tuck needs! I have no doubt that the good Lord knew exactly what he was doing when he sent this precious little guy to you. Love him. Love you. Love this post! I hope you find the answers that you are searching for soon. Give that Tuck a big kiss from his aunt Erin.

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    1. Oh Erin, thank you! I thought you might relate a little to that story, as I've heard you say similar things before. It's a hard pill to swallow. For some reason, really hard for me right now. Thanks so much for your sweet words though, it means a lot. Love you!

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  7. chelsea, you have such a beautiful heart. you and your children are all so beautiful, inside and out. i think you are doing the best you can and what else can anyone ask for. you're so wise to see that you are growing more beautiful from this experience. when you open your heart like this for us to read, it opens ours as well and we get a glimpse of the joys and frustrations you are going through as a mom. i hope it helps you because it is teaching us all. i am sending you love and light and hope you find the answers to your questions and most of all that you are blessed with the most caring, competent, and wonderful teachers, therapists, and other professionals along the way. your light is so bright, i'm sure that's already been the case thus far. i'll be keeping you always in my prayers. i love your family.

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    1. You always have a way of making me smile Anushka! You are so right, it does help me so much to put these thoughts out there in the world. It's funny because I had this post about half written for a few days, and then was just feeling really crummy last night. I knew I needed to sit down and write to feel better, and this is what came out. Thank you so much for always being so loving from afar, and for all your encouraging support. xo

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  8. Chels,
    That sweet baby is so lucky to have you for his mama. You are a AMAZING!!! You are an example to everyone around you, of how selfless and kind hearted one person can be. Tuck is your silver lining in life. I think you are an inspiration. xoxo

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  9. My best advice...when someone looks, compares, wrinkles an eyebrow, says something hurtful...PRAY FOR THEM! Your son is a blessing, as is your daughter and other son. They are individuals, it just happens two gifts arrived at the same time. When times are tough, HUG, without speaking. It heals.

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  10. So beautiful. Reading this brought tears to my eyes. While I have not personally gone through challenges like this with my child (soon to be children), I have a friend who has and I have never quite known how to help, how to be there, what to say, how she feels. Reading this was so good for me. I appreciate your raw honesty.
    I sincerely wish you all the best in navigating this life with your sweet babes. They are immensely blessed to have a mama like you. xo

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  11. Oh sweet friend, how I loved and related to this post. I so admire your courage and openness and I'm going to follow your lead. The important thing to remember is you aren't alone. I'm grateful to be in such good company here in Holland with a friend as priceless as you. Lets go pick some tulips, shall we? Xo

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  12. Chels, you have a way with words - this makes my heart hurt for you and your cute little family, but I hear that Holland is the on the shortcut to heaven and Italy can take a lot longer, so I guess that's kind of nice, right?

    But let's be honest, it's totally crappy you, your family, and your sweetest son Tuck have to go through this. I hope you receive answers to your latest challenge soon, and in the meantime I hope your are more patient and long-suffering than me, because I don't know if I could deal. You are amazing and constantly impress me as the years go by.

    Sending my love and support in any way you need.
    love,
    Marianne

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  13. Oh chels! I loved this- may not have been a good idea to read it on my commute to work, as I was in tears on the tube! What a wonderful post- you're amazing and I think everyone should read this. Inspirational and wonderful perspective. Love you so much!!!

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  14. Chels! This is such a tender sweet post and I am so glad I read it! Such perspective! There is so much beauty and strength in your place called Holland, and I hope you know how amazing you are, traveling that road with sweet Tuck! I just think the world of you and all you do! Truly inspiring! Thanks for sharing! :)

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  15. Oh Chelsea, reading this brought tears to my eyes. Life can be so very hard and unfair, and I think you beautifully and honestly articulate the pain that comes when life's plans get derailed. I think one of the most poignant parts is your mentioning how painful it is to hear others describe coming and going from Italy when you are in Holland. I can't imagine the complicated feelings and emotions that must come with having a child with special needs, and how those complications must be multiplied when that special needs child is a twin. And yet you also describe so beautifully how much joy and love Tuck brings to you.

    You are so brave to express these feelings, and I admire you for focusing on your little family and little Tuck. I am sure it comes at great personal expense (sacrificing time with friends--and probaly sacrificing much more than you mention above) that many, if not most, people never see.

    I am struggling with such different challenges in my life (working full-time, being a single mom), but I so relate to feelings you mention above. It's hard for me to hear others talk about marriage and it's hard for me to hear other's talk about staying home full-time with their kids. My life has turned out very differently than I thought it would, and it's very different from most the people around me, but I'm also very grateful for my life and the sweet moments with my little ones.

    I'm so sorry for the many challenges this situation presents for you and for Tuck, but I also admire your dedication to him and your family. You are just amazing and Tuck is so blessed to have you for his mom. I am sure this post will inspire, lift, and comfort many of mothers out there. I certainly feel inspired! xoxo, Emily

    P.S. Have I ever mentioned that Tuck happens to be my absolute favorite child on Instagram? I shouldn't really admit that, but I am absolutely in love with him.

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  16. Life is hard. Most people don't admit to it, maybe in an effort not to complain, or maybe in effort to fit in with the Italy goers, or maybe some people just haven't had their first big trial yet, but whatever the reason it can bring feelings of loneliness. I've been to Holland. As I have watched you go through the "refining process" I have been nothing but proud. You are right, Tuck has helped you become a better person. But it won't stop with you, he will influence so many of us for good. You're the best.

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  17. You're an incredible person Chels and this post is tender and real and powerful and perfect. I so admire your dedication as a person and friend and momma to Tuck. He is lucky to have you and you are lucky to have him. Love you to the moon.

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  18. I feel you in this post. I have an almost 4 year old and a 13 month old, both boys. Our oldest was just given an Autism Spectrum Disorder diagnosis. We've been doing speech therapy for a year, occupational therapy for 5-6 months, and with this official diagnosis, will likely start Applied Behavior Analysis therapy as well. It is completely overwhelming. I work full-time as a pharmacist, I am the breadwinner. I cannot quit my job to get him to his therapies. My husband recently quit his job to help with this and pursue a new career that's a little more family-friendly. Some days are good. I know that this has and will help me to be a better mother/wife/pharmacist even because of our experience. But that doesn't make it easy. I want more children, but I worry about another ASD diagnosis. I worry that he will be reliant on us as an adult. I worry that he will get made fun of. I mourn the loss of the little boy I thought I would have as my first born. I feel guilty about how excited I am to see my youngest, my neurotypical child in certain situations that are difficult for my oldest. It is so so hard. Hard to be in the midst of it every day and know that there is no end. Hard to even explain any of it to anyone because you just can't understand unless you are in the middle of it yourself. But I agree, the Holland analogy is a good one. Our stories are different and yet similar. Know that we are the warrior mamas for these sweet boys and we were chosen specifically to be their mamas. I apologize for the long comment, but I just want you to know that I understand.

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