Saturday, January 22, 2011

What I Am

Last week as I attempted to guide Dylan with self-feeding, I saw it. Frustration. Total frustration. Dylan had the spoon and dunked it into the applesauce. He brought it clumsily up to his face and missed his mouth almost completely. I kept my smile on and said, "Oh! That's OK! That's alright!". Dylan made a sound that I can only describe as total frustration.

I think that was the first time I have seen that from him.

He attempted something that is difficult for him and he knew, he knows, that it's hard. He knows that he is not good at it and he is very frustrated by that.

I was explaining this to one of his new therapists a few days ago and as I was talking to her, I realized that this hurt. Knowing that my son is feeling frustrated by something that he can not do well, and realizing that he now knows it is hard for him...that hurts.

She responded with, "This is why we need to get him walking as soon as possible. He is only getting bigger and smarter and will soon be feeling bad about not being able to walk, too.".

That hurt, too.


Last night we went sledding with my sister and her 2 sons. Cassidy was struggling with carrying up her own sled and eventually got frustrated. "I CAN'T DO THIS!", she yelled about half-way up the hill. Becky and I shouted to her, "You CAN! Keep going!". She continued to get increasingly more frustrated by the whole situation until finally (apparently) she threw herself backwards into a snow bank. (I missed that part as I had just prior to that decided that "Dylan" was too cold and therefore I should bring him back into the nice warm house).

But Cass was frustrated. She could not do something that she wanted to do. It was difficult for her and that frustrated her.

That hurt to see.


This morning I made the connection between Dylan's frustration and Cassidy's frustration. It IS frustrating when you can not do things that you feel you should be able to do. (Honestly, I feel it most mornings as I reach the "upper abs" section of Jackie Warner's On Demand workout. I should be able to do this. Why can't I breathe, why can't I DO THIS?!!) Life can be frustrating. Life can be challenging. Not only for Dylan, though...not only for kids with special needs, but for everyone. Will it be more so for Dylan? As things become increasingly challenging, will it be more frustrating for him? Will it hurt him knowing that he is not able to do things that his peers can do?

I honestly do not know, but what I DO know is that the whole notion of thinking about and focusing on what we can't do is wrong. Yes it's frustrating when we can't do things, but look at all of what we CAN do!

When Dylan's new Physical Therapist came to our house for the first time two weeks ago, one of the very first questions she asked me is, "Why isn't he walking?". I responded, "I don't know. Perhaps he is not ready.". I wish I had added to that all of the amazing things that he CAN do.

Walking will come. Self feeding will come. Cass being able to carry up her own sled - that will come, too. We need to continue to build on that self-confidence, though, because there will always be frustrations with the things that we can't do.

Oh how I want my kids to see the good in themselves and to have the confidence to know exactly what they are. To keep their heads up high, be strong, and be the best that they can be... I want...when the frustrations come, for them to keep going, to roll with the punches and to remember all that they CAN do.


heather said...

I'm not sure how old Dylan is but wanted to let you know that Morgan didn't take her first steps until she was 29 months old. 6 years later and she rides a bike with training wheels all over the neighborhood, rides her scooter, hops, skips. She can do everything her peers can do. You would NEVER know she was one of the last one of her Ds friends to walk. Don't stress over the walking. He'll do it when he wants to. Promise!

Looking Up said...

I hear ya. It can be so painful as a parent to watch our kid work so hard to reach a milestone that is otherwise relatively easy for other kids. Even more so when we see the frustration on our little one's face. I have to tell you that I am a little perturbed at your new PT's question, "Why isn't he walking yet?". Excuse me, but does your son not only have DS, but did he not also undergo open heart surgery at 4 mos of age? That alone can set a kid back several months in terms of developmental milestones. I say this because my own 2yr old son Josh, who happens to have DS, also underwent a complete AV canal repair when he was 3 months old. Josh was seriously ill for several months after the surgery. My son's cardiologist believes that that alone set my son back at least three months, I can only imagine that your little guy is in a similar boat. Forget about the fact that the AVERAGE age for any kid with DS to begin walking is 24months. Does your PT not know this? Instead of asking why your son isn't walking, perhaps the new PT could inquire about what your son CAN do & offer suggestions as to how to build on those skills. Just sayin'......

Christi Harrison said...

so true! Wise words.

Kelly said...

Great post, Laurie......I truly FEEL every word of it! Been struggling with these same issues! It is so tough to watch these frustrations.....for Landon & was the feeding thing, too.....which eventually led us to a feeding clinic. I know that he will do these.....but watching him get frustrated was making me equally (or more) frustrated! Why does this have to be so challenging for him?! But I see those frustrations in Mason & Elijah too!!

You nailed it......look at all the things that they CAN DO!!! Ultimately, LIFE is full of challenges!! That's just how this game is played!! Giving our kiddos the tools to work through those challenges is all we really can do....after all.....we are playing this game of life too.....and have our own challenges to face!

We will all get there....when WE are ready!!

BTW, you were the 3 "friend" of mine that talked about the Happiness Project.....after your post, I finally bought the book!! I took that as a SIGN!!! Just started reading it and will begin MY project soon!! Thanks for little push.....I NEEDED IT:)

Loren Stow said...

What a great post! I particularly love the part about ALL of us having to endure frustration at some point, not just those who are differently abled! We all have strengths and weaknesses. And, again, I also love the part about celebrating our abilites! That is what truly matters - to see and acknowledge where we shine (as children and as mamas). Malakai walked very early, but still is not talking... And I was amazed at how dylan is talking and repeating words that you ask him to say :) !!! Different strengths and different challenges.

Hope your happiness project is going well! I still haven't started mine, truth be told, but I will soon!

Bethany said...

I don't like your therapists. LOL. Dylan will walk. Dylan will self feed. Have you tried taking a step backwards with that and using one of those dipper utensil things, where the child only has to dip and bring to his mouth? Might help a little, not sure?

I worry about empowering my kids too, and we have been dealing with this with Mason ... making sure he feels confident enough in himself and his place in our family. :( It is so hard, but so natural, I think? LOL.

Making my task tonight to work on your blog!!! IM me if you are on yahoo. :)

Kelli said...

Oh i feel your pain! We do all get frustrated at times and I never really thought about in those terms. Either way though my back sure is frustrated that Lindsey isn't walking. :) We are in the process of having her work on walking with a gait trainer. Lindsey is only frustrated about the feeding thing if WE aren't doing the feeding. She has no interest in taking over unless it involves puffs.
Great post. Way to put things in perspective.

Lisa said...

Laurie, this post hurt me. Or rather, what Dyan's therapist said. I know I'm a non-conformist when it comes to therapy and early intervention, but I am so not on board with this whole notion of getting them to reach milestones "as soon as possible." It's so arbitrary. Dylan will walk when Dylan is ready to walk - not a moment sooner, and not a moment later. And I just don't believe for a second that kids - Ds or not - can be "made" or even "taught" to reach milestones. I know my viewpoint is not popular, and likely pisses certain people off, but I believe this with all my heart. A whole industry has been developed around early intervention, and in so many cases it's a one-size fits all proposition. How can a new therapist come in and decide that Dylan should already be walking? That just makes me so mad. And look how it makes you, the parent, feel. Finn's PT was bound and determined to get him walking "as soon as possible," and it was torture. And it didn't work. He walked when he was ready to walk, period. We've quit all therapy at this point, and I have no regrets whatsoever. Finn is making gains by leaps and bounds - because he's ready to, period. There are lots of things he's not doing yet, and I don't believe at all that any therapist could make it happen any sooner. He will do all things when he is ready to, just like any other kid.

Tausha said...

I to was frustrated by Sam not walking when everyone else was around him that has Down syndrome. It will come though I promise. He is now running or walking really fast everywhere, can't keep track of him. Be patient and it will come.

Shelley said...

Great post - I hate it when things are hard for my twins and they get frustrated - now they are 6 I generally just acknowledge it - Hannah started saying 'it too hard' - and if I think it is I simply agree with her - at other times when I think with a push and a little help she could do it - I say 'no Hannah, it's not too hard. It's tricky' - and really celebrate when she gets it done.
In her own time - I think she can do anything! lol.
PS Dylan sure is a cutiepie - such a sweet face!