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Tuesday, July 24, 2012


Before I was a parent, I had expectations of how our life would be when we finally had a little baby in our arms. Then we found out we were having twins. Then we found out I had to go on bed rest. Then we found out the boys would be born 11 weeks early. Then we found out they would need multiple weekly therapies for years and years in order to function at age-level and have the best possible life. Then we discovered there were names to go along with the difficult behaviors the boys were experiencing: SPD, Tourette Syndrome, ADHD, Bipolar Disorder...

My expectations of parenthood have, on many occasions, had to change.

That has been one of the hardest things I've had to learn as a parent- that I can't control many things that happen in our family, and so many times I have to change my expectations. Sometimes I get blindsided by what my expectations are versus what my kids need.  

If you've been in the special needs community for a while, you're probably familiar with the essay written by Emily Perl Kingsley called "Welcome to Holland." The story is about how you are on an airplane and expect it to take you to Italy for a fabulous, exotic, beautiful experience. Instead, when the plane lands, you realize you are in Holland. Everything you anticipated about your fabulous vacation has been drastically changed. Eventually you learn to understand and love Holland, but it will never be what your friends from Italy experience on a daily basis, and it will never be what you thought you were headed for on that airplane. This is how it feels to parent a special needs child. Or four. 

Yesterday my sweet baby turned three years old. I can't believe three years have passed since that scary and joyful day she was born. We had a great Birthday morning. Our perfect breakfast included, what else, pink pancakes and pink streamers.
Later we told Ella that she could pick what we ate for lunch. She wanted bagels. So we piled into the car and went to Einstein Bagels for lunch with the Birthday Girl. Ella and I looked smashing. We had our hair done all pretty, we had dresses and lip gloss on, and we were girly girls and lovin' it. We were ready to celebrate life and family and birthdays with a bagel lunch.

We got to the bagel store, and Aidan started going nuts. Running around yelling, flapping like a bird, trying to jump and hang on the counters. No matter what we did, Aidan would not calm down. 

Finally I gave up my dream of my bagel birthday lunch. I loaded up my bagel and Aidan's bagel, and dragged him, yelling and flapping, to the car. We proceeded to eat our lunch alone in the car while the birthday festivities continued without us in the bagel store. I was angry and disappointed. I had expected to celebrate a lovely birthday lunch with my sweet girl and the rest of our family. Instead I was sitting in the hot, stale car, eating my bagel in silence with a crabby boy who wasn't able to handle being in public. Sometimes the fact that I have to change my expectations hits me head on, and it really stinks. 

As usual when my expectations disintegrate, I allowed myself to feel the feelings of disappointment and irritation, and then tried to accept that I couldn't do much to change the situation. And, that what I am doing is the best thing for my child. It's hard at times to realize it's not all about me. My four little people have unique needs and often my wants come dead last. 

When I have expectations of something being insignificant and simple, like running to the grocery store for a couple dinner items with all the kids, it turns into Chaos with a capital 'C'. This is why I try to plan for all unexpected variables. Lost tooth? I have a baggie for that. Skinned knee? Got a bandaid. Peanut allergy? Epi Pen is always on hand. Running late because a boy had to go potty for 45 minutes? I always get started early, so we have extra time for potty issues. Kids getting squirrely? Push the cart (heavy work for Sensory Issues), or look at the book I always have in my purse, or use the fidget we always carry. People tease me because of my over- planning, but if you plan for Crazy, when Crazy happens then you're not quite as overwhelmed and angry. 

I often have to grit my teeth and change my expectations to meet my children's needs. And although we're definitely not in balmy, perfect, exotic Italy, I have come to appreciate and cherish each moment in Holland. I wouldn't leave this place, or this family, for anything. I just keep trying to work every day on being ok with having to change my expectations. I'm amazed daily at how much these four little people have challenged me to grow. I guess I'm a work in progress. And despite not having a bagel lunch with my Birthday Girl, we all shared a fabulous day with our little diva. 


Anonymous said...

I'd like to invite you to Voices of Sensory Processing Disorder. This is a community website where bloggers can share their experiences, victories, tips and everyday sensory challenges with others. And we want you! We’d love to share your writing.

Please visit us at to learn more. I do hope you'll join us. Happy blogging!
Regards, Jennifer

Anonymous said...

I just read your post on the SPD blogger network, I still haven't the mind to write my own, mostly because I don't know where to start. I have 4 children as well (4,3,2 and 3 months), two of them have special needs so I can really relate to how you feel.

Carrie said...

Wow, you have your hands full with such little ones! It can be overwhelming, can't it, having multiple kids, and multiple kids with special needs. It's good to know we're not alone out there! Wishing you all the best!

Anonymous said...

I found you one SPD Blogger Network :) I wanted to reply to the post, but it was mostly about my son having the same diagnosis' as your own except Tourette's but I thought a year ago he had a lot of things he did that pointed to it. It has since ceased a bit, except I just don't know if i could get another dx!

I am looking forward to reading more of your blog :)


Carrie said...

Thank you for finding me! :) It is interesting to see things unfold in our kids, as far as their diagnoses go. My 3 boys all have TS, but their tics come and go, change, etc. It's challenging to know what symptoms are due to which diagnosis! I know what you're going through!