Thursday, May 30, 2013

Let Nature Take Its Course?

Now that I'm pregnant again, memories from my other two pregnancies keep resurfacing. Which weeks I was the sickest. Hip pain that tortured me for most of Carter's pregnancy. At what point I exploded into a giant ball of fat. Specific doctors appointments.

Last night for some reason, a doctors appointment came to mind. A sad memory that I keep tucked away.

It was towards the end of Addison's pregnancy (I think it was in the early 30 weeks), and I went into the appointment prepared to discuss birth plans. I wanted to go all natural, and I had some questions for the doctor. But we never got around to discussing it because halfway through the appointment, the doctor said

"Do you want medical intervention to save your baby's life if necessary, or do you want nature to take its course?"

As I was silent, rather shocked by the question, she continued

"That's what we ask all parents of handicapped children."

Now she asked this question very gently and kindly, but I felt rather stung by the word "handicap" to describe my baby that I hadn't even met yet.

I remember responding in a daze that of course I would want them to do whatever it takes to save her. I wanted them to give her life as much effort as they would give any other baby.

The doctor nodded and noted that on my chart.

Remembering this last night, I realized that the true sting in that conversation wasn't the word "handicap." It was that a small part of me wanted to say "No. Don't help her. It will be easier to just say goodbye than to face a life of hardship. Don't perform medical intervention. Let nature take its course."

The last three years have given me some perspective on this that I didn't have at the time. I have no doubt that without medical help, Addison would not have survived very long. She was extremely sick and needed a lot of help for a long time. Looking back on this now- remembering my small desire to say that- but refusing to let myself go there- I think of how once again I almost missed out on something very good.

After all- if Addison had been born a century ago- the medical intervention she needed wouldn't have even been possible. Would it have been a wrong decision? "To let nature take its course"- isn't God in control of that? Were we trying to play God by prolonging a life that he designed to only say "hello goodbye?"

I don't let myself feel guilty about the small part of me that wanted to say that. I hadn't met Addison. It seemed hugely easier than what I thought we were facing- especially if that was the way it was meant to be. But the bigger part of me that said vehemently "OF COURSE we want you to try everything you can" knew that to go the other route was to give up-to give up on a life perfectly created. 

God allowed Addison to be born in a time when the help was there that she needed. To not access that when we could? To me that seemed like giving up on a good thing gifted to us (a little girl) just because the outcome was unknown and therefore seemed scary.

I think about the joy, happiness, and extreme blessing that Addison has brought our family, and I am so thankful.

Of course I don't speak for any other families or any other situations, because I understand that sometimes letting nature take its course is the absolute right decision. But for us? It would have been the wrong one.

Since this pregnancy caught us a bit by surprise, I'm not afraid to admit that I have had significant fear about it. Being so involved in the special needs community- watching friends and family lose children- I know how many different ways this pregnancy can go.

But that memory from Addison's pregnancy- knowing how uncertain everything was- remembering the fear- recalling the pain from this doctors appointment- it's so reassuring to know that the same God that brought us through all of that with our perfect Addison also designed this new little baby. That's more comforting than all the prenatal tests, screenings, and ultrasounds in the world.

Wednesday, May 29, 2013

After Vacation

Rain is falling in sheets outside. The air holds a slight chill. It's the kind of day that demands First Nap immediately after breakfast. Sadly, I'm the only one who got that memo.
I sit on my couch, feet propped up on a pile of needs-to-be-folded laundry. One hand is trying to keep my cup of coffee level, the other is helping to assist the wiggling mass of toddler bodies climbing up on top of me.

I find myself saying sentences like "NO, we do NOT kick each other in the face" and "Carter's head is NOT a stepping stool."
But eventually they settle. Two warm heads rest on my chest. Chubby bare feet dangle over the edge of the couch. One at a time they turn their faces up to mine for a kiss and a smile, and then they rest on me again. Still- warm- snuggly.

I think about my to do list for this morning. Fold laundry. Clean up kitchen. Vacuum.

I think about our trip away over the weekend and how the word "vacation" has taken on such a new meaning to me with two toddlers who love to run away...and struggle to sleep in beds that are not their own. In my mind I compare it to shopping in a recliner store without the ability to sit down. You can see the restfulness available. You comment on the extreme comfort of the product. And yet you stand and watch others enjoy it as you try to keep track of two small bodies full of mischief and a long range plan for trouble.
But in spite of the new meaning of vacation, it was still a wonderful weekend in its own way. Full of memories and moments of firsts for the kids. I think of all of this while I juggle my arm-full of toddler goodness and try to get my coffee cup to my lips for a sip without spilling.

I ignore the voice in my head that tells me to get up and get going! This laundry isn't going to fold itself! So much work to do to continue to dig out from vacation. But to me- there are things that are much more important than a clean house. Things like expanding out this moment as far as possible- just me and my babes snuggled up on the couch talking and laughing together.

I stroke blonde heads the way I know that they love. I show them pictures on Instagram and wait for them to name the things that they know. I flip it over to camera mode and let them look at themselves in the mirror. I wrap both my arms around them and just enjoy the rare moment of stillness from both of them at once.
Yes, the weekend vacation wasn't as relaxing as it would have been before children. I am learning that although life might look very different and things like vacations will never be the same- it is all still good in a new way. On this rainy day as I sit in my own house- chores neglected-children snuggled up tight- I decide to claim this moment right here as my vacation of rest. And it is perfect.


Wednesday, May 22, 2013

Un-Defining Disability

Disability.

This is a word that carries with it heavy weight in this world. But most days, I redefine it. Actually, I un-define it. I suck all meaning from this word normally paired with such negativity, and I allow it to float silently above us. It is very present, and it worms its way into more decisions than I give credit to- but it means nothing. It is just a word. A word that I don't allow to steal any beauty from our life with Addison.

Most days.

There is still the occasional day- actually it's down to just a moment- when this is not true. A brief slipping in time when the negativity reenters my mind. The full weight of meaning returns to the word disability and my breath is taken away. Just for a moment.

Like the moment that occurred today in the exhausted state of a full day of doctor's appointments at a facility two hours away that I had to wake up my children and leave for at 6 am. That moment- after seeking second opinions on Addison's sight and hearing- I learn that not only will we have to once again do glasses, but that she has hearing loss that will most likely require hearing aids in the near future. This moment occurred after a day of Addison's newly cut down orthotics making the leg warmers ride up. Exposing them. Exposing the disability.

As my breath is taken away with all of this at once, I think about how I accessorize her orthotics. How I used to make them pretty and girly with such fun leg warmers until that strap was cut away last week and now they won't stay in place. I think about Addison's tiny ears wearing hearing aids. I picture her face covered in glasses. All three of these things are not hugely negative in and of themselves, but when I picture all three of them together, taking over Addison's tiny frame, one word jumps into my mind- disability.

In that moment I find myself unable to continue my daily game of sucking the meaning out of that word. I feel the full weight of it rest upon me. I see how it affects my daughter. How it affects our whole family.

This is not something that is going to go away. This is not something that will get better over time. This is our reality. The staggering implications of that becomes more than I can wrap my mind around. There's no way to spin it to make it seem happy and amazing. There's no to cover the hard with a soft, pretty quilt and pretend that it doesn't exist. Disability is a very real part of our life.

But then as quickly as it happens, that moment is gone.

I look to my little girl. The one who is melting down because she missed nap time. The one who is standing at the door of the audiology testing room saying and signing "bye-bye" over and over again. The one who is so fiercely independent she didn't even want to sit on my lap for the testing. She wanted her OWN CHAIR, thank you very much.

And when I look at my girl- really look- that word disability once again begins to float weightless over our heads. Meaning nothing. Saying nothing. Projecting nothing.

She smiles at me. But only because I'm opening the door for her and that's exactly what she wanted. She's singing now. Loudly. While shaking the jingle bells percussion toy that she stole from my purse during my talk with the doctor.

I grasp in my hand new prescriptions, make plans for next appointments, and continue watching sweet Addison swagger down the hallway- orthotics fully exposed. But she doesn't care. Because they help her walk so much better. Just like the glasses will help her see better. And the hearing aids will help her hear better. 

Addison doesn't care that she has a disability. She just wants to live- fully. And if modern medicine can hep her do that with more ease? The more she enjoys and thrives in the process of life. That- to me- is a win.

After she's all suited up in her new gear, at first glance perhaps a stranger's thought might include the word disability. But if they were to look carefully at the mom holding the little girl's hand, they should also include the word thankful in that same sentence. Because to that mom, that first word doesn't mean a blessed thing.

Tuesday, May 21, 2013

I met my future today

(Well, actually- yesterday. I didn't post this last night out of respect for the families in Oklahoma. Praying in earnest for all of you.)

It's rare for me to see another family with a child with Down syndrome when I'm out and about town running errands. And when I do? My heart starts racing, my palms grow sweaty, and the question starts spinning round and round in my mind- should I talk to them?

I want to recognize our bond but yet we are complete strangers- should it really matter? It's doubly weird if I happen to be out without children- so it's not like they can look in my cart and just know.

Today I had a dozen stops to make all over town, and thankfully I had a sitter at home with the kids to make this possible. Zipping right through my list with a speed only possible with a kid-free car and a sugar-high from cupcakes that I will totally deny buying...and eating- I was on my second to last stop.

I was searching all around the kids resale shop for a swim suit for Carter (so he didn't have to parade around in Addison's yellow two piece for our trip to Maine this weekend) when I saw her. A beautiful teenage girl out shopping with her mother. The pair stuck close together, and I knew without a doubt that this girl had Down syndrome.

Should I say something? What should I say? It seemed silly for me to make a big deal of it- especially since Addison wasn't with me. But I found myself unable to walk away. After circling around four or five times, I finally found the courage to introduce myself and tell her what a lovely daughter she had.

Very soon into the conversation I found out:
1. She has a son who is 18 months younger than her 14 year old daughter with Down syndrome (Addison and Carter are 19 months apart)
2. Her husband owns and runs his own landscaping company a couple of towns over (this is what my husband does)
3. Her husband teaches skiing in the landscaping off-season (this is also what my husband does)
3. Our daughters share a bunch of doctors- and heart experiences in Boston
4. She stays at home with her kids because of how overwhelming she found the two kids close in age with the added disability factor (yup)
5. Her last name is Smith (um....so is mine)

(Dear Aaron, if you notice a PI trailing you in the near future....)

Pretty much- I met the future me today. What will my life be like in 10 years? I had a chance to see today. And it was pretty awesome.

We chatted, talked, swapped stories, and pretty much found a kindred spirit in each other. It was so amazing to be able to talk with her honestly- we skipped a year of friendship pleasantries and went right to the heart of things. I asked her if her son- as a middle schooler- ever resented the fact that his sister had a disability (she said no). I told her about a new doctor we were trying on Wednesday and she shared their experience there. We discussed being a landscapers wife and the reality of juggling a child with many appointments and a husband who is insanely busy running his own business.

She told me that her girl is reading 120 words a minute, knows fractions and equations, and is a fabulous swimmer. Her son and daughter are very close, play together almost constantly, and have extremely normal sibling squabbles.

By this point her daughter was done browsing the movie titles (since our chat was starting to turn into an afternoon tea) and came over to where we were talking.

"This is Deanna. She has a little girl who also goes to Dr. _. Her little girl also has Down syndrome. Just like you do." The mother lovingly explained to her girl.

"Cool." was the response.

I have always wondered about that. Will Addison understand what is different about her as she grows older? After today, I'm thinking- yes, yes she will.

Also- Addison's orthotic person has been commenting recently on Addison's neck posture- suggesting we get that x-rayed. I brushed it off since Addison's Pediatrician said it was nothing to be worried about. Talking to my new friend, she told me how her daughter fell backwards off a very low futon and had to have her neck fused together. The hyper-mobility in her neck made a very small fall an extremely serious issue. I was so glad to hear this as I am now taking Addison's neck posture concerns much more seriously.

I know I didn't really meet a future "me" (even though there were a lot of rather creepy similarities.) But it was SO refreshing to get a glimpse into a difference phase. A time in life where I can take Addison out and not worry about her running off into traffic. A time in life where my daughter and I can do normal mother/daughter activities instead of constantly being in mommy/baby mode.

Meeting my new friend and her daughter today was rather like a breath of fresh air. Sometimes I struggle so much with the today that I forget that things will get better. Sometimes I worry that Addison will always be a baby- but today I was reminded to hope. Even though there will always be delays- I will see a change, a maturing, a new phase- eventually.

In the daily grind of today I often lose sight of the big picture. And today I felt like I had a museum tour of the big picture. It was incredible.







Thursday, May 16, 2013

Thoughts on Family Planning

"How many kids should we have and how far apart should we space them?"

Is a question asked by many.
I've heard people say that you just keep going and you will know when you're done. I've heard people swear by a certain number and do whatever snip-snip necessary to insure that to be reality. 

The thing is- the answer to this question is going to be different for every family. The reassuring thing is? There is no moral right and wrong answer. Many different things are considered- finances, age of the parents, schedule of the family, health needs of existing family, etc etc etc.

Aaron and I, mid-twenties and full of energy, went into family planning very casually once we were ready to start making a family. We waited three years (to finish grad school and get settled in a house...personal preferences once again) and then our worlds were rocked into first time parenting PLUS first time parenting with a disability.

I think that once you have a child with a disability, family planning takes an entirely new twist. There's the thought- who will take care of your child with a disability after you're gone? But then of course there's the argument that you shouldn't give birth to the next child with a pre-scheduled caretaker job. You think about how slowly your child is developing and want to wait until they've achieved a few key things first (like potty training)...but then the reality of the situation is- you have no idea when that might be because typical age milestones don't apply.

We decided to have Carter very close in age to Addison (they are nineteen months apart.) I'm not going to lie. I barely remember his first year of life (good thing I blogged it, huh). It was a ROUGH transition. She was still so much of a baby herself. She wasn't walking, feeding herself, talking, or anywhere close to potty trained- not to mention she had hours and hours of therapy each week that I still had to keep up with.
But now I am very glad that we planned it this way. They are besties. They do everything together. They teach each other. They thrive off of each other. Yes, my hands are very full. Yes, the transition to adding him to our family was horrible. But it has all been worth it. As I look to our future I am confident in our family dynamics being the kind of hilarious dysfunction everyone dreams about. (ha)

Well, long story short, we knew we wanted at least one more. We didn't feel done. We wanted a big family full of sibling camaraderie and love. But we were stumped as to when it should happen. Should we wait a long time and have the twinsies and then an outlier? Should we have one again right away and have another year (or five) from hell adjusting?

It is tough when your oldest has a disability. Because there is no guarantee in nine months that they will be behaviorally nine months older. We found the decision of when to add a third very difficult to make. Especially since we weren't foolishly naive about the transition- like we were when we went into Carter's birth. It would be nice if Addison would be helpful like an typical four year old instead of strolling along in her own timetable of development. But the truth is- she's not. And we just had to be OK with that being part of our family planning story.

Anyway, long story short- this pregnancy surprised us. (Yes, we know how "it" happens-promise. But sometimes you can do everything right and yet still....) In another sense, it was perfect this way. Because the tough decision was taken out of our hands- something that we wanted, but didn't know how best to plan. Also- it lines up perfectly with the end of Aaron's landscape season so I will have more help this time than I did when Carter was born in September two years ago.

For those of you who asked- I am due November 27th (the day before Thanksgiving). I am currently 12 weeks pregnant. I am feeling OK. Not as sick as I was with the other two (thank goodness...there is a God). But definitely exhausted and off-and-on sick.

We will have three kids three and under (Addison will turn four two months later). It will be overwhelming. It will be crazy. Life will no doubt be ALL CAPS blog post worthy (if I can find time to stumble to my computer once every other month.)
But in spite of some apprehension of what this will exactly look like- we feel very peaceful about the timing of #3. We are excited. And we love the thought of another baby around our house- another sibling to fill up our nest. Not "another caretaker for Addison" or "another teacher for Addison" or anything like that. A third baby- equally loved and cherished as our other two with no expectations put on the future.

Family planning will look very different for each family. I am certainly not an expert. (Especially since I am the one who will be chained to my house for the next ten years.) But, we are happy to do this while we are young and able to. We are thankful for the impressionable lives in our care. We feel blessed, and know that this is the perfect path for our family.

After watching my sister lose an infant- watching friends battle infertility- and working so hard for every accomplishment with Addison- having children means something entirely different to me now than it did starting out as a first time mom. It isn't a burden or an "oops I did it again." It is a privilege- one that I don't take lightly. 

If you have caught an edge of overwhelmedness from me here on the blog lately- that has a lot to do with first trimester exhaustion. Add "super tired" or "just threw up" or "had a huge headache" to almost every story and then you have the true picture. ha.

So...spill it...are you one to space children out a specific number of years? How did you know when you were done having kids? If you have survived the three, three and under game- RAISE YOUR HAND AND SHOUT (and also...use your other hand to pat yourself on your back. You are officially my hero) Since we all have different answers to these questions...it's only fair to share. Right?
pssssst- thank you so much for all of your congratulations! Your sweet words meant so much!


Wednesday, May 15, 2013

We're growing our own Thanksgiving turkey this year

(a small, 7 1/2 pound turkey)

Also...I am learning to count to 3 in a new way.
(please excuse the sleeping photo bomber)
(yup, the mirror is dirty. I am too tired to care.)

1. and 2. are pretty psyched to add 3.
as long as extra sharing duties are not mentioned.
Dear 3, I know you have four more weeks on this glamor shot...but you're going to have to do a lot better than this to hold your own in the circus around here...
Love, your ever-expanding Mama

Monday, May 13, 2013

The Good, The Bad, And The Smelly

Scene, Saturday night:

I walked slowly through my clean house, enjoying the slight breeze that was sneaking in one window and escaping out another. The children were fed, bathed, happy, and peacefully sleeping in their respective rooms. I paused in the Dining Room to admire once again my large vase of freshly picked lilacs. Beautiful yet delicate, these flowers brought a cheerful sort of life to the small space where I normally spend long hours scrubbing food off the floor. Not today. Not tonight.

Tonight this space was a space where I felt like the luckiest woman alive. I felt myself floating with happiness- for no discernible reason. It was one of those days where I really connected with my children. They seemed so grown up. So amazing. So much a small extension of myself- connecting with me in ways that I have only dreamed about in the past. We spent the afternoon at a farm, seeing animals, picking flowers, talking with friends, soaking in the peaceful scenery of a rural Vermont farm in the spring.
We had company over the night before and because we spent Saturday out- the house was still impressively clean for the distance of time from "cleaning time"  to now being almost 24 hours. When the children devoured leftovers from the lasagna/chocolate cake meal after nap time- they ate really well. And they smiled and laughed and yelled "CAKE" in perfect harmony while blowing me kisses of true love.

That day was full of laughter. And hugs. And kisses. And spoken words from sweet lips. And obedience. And all the things that fill my mothering cup so full of wondrous love.

As I walked through my house, smiling with thanksgiving for the many blessings that have been sent my way- I realized that I lacked for nothing. Not one single thing could make my life better. Because I felt complete.

The smell of my baking homemade pizza wafted through the air, competing with the fresh lilacs and the open window breeze. I felt as though the smells joined forces and whispered aloud to me. "You have made a home."

A comfortable home to raise my family. A home were peace and happiness are in frequent supply. A home where perfection is absent but love is overwhelming.

I sighed, relished the moment of supreme bliss, and looked forward to many more days with my little family. Each of them a gift and blessing of the greatest degree.

Scene, Monday morning:

I stumbled bleary-eyed to rescue children from their clearly torturous cribs (as evidenced by their yells and screams). No matter how early I go to bed Sunday night- Monday morning without fail comes as a rude surprise.

Addison lifted out of her room quite nicely, immediately off in search of a snack, but Carter? I discovered that Carter had somehow vomited in the middle night and then laid back down in it and kept sleeping. That was a super fun discovery.

After that cleanup, I headed to make the children breakfast. "COOKIE" they both demanded. For some reason, the substitute oatmeal I made them was received much like the kiss of death. Glaring at me and pushing the oatmeal far away, they both declared that they were "all done" and "not hungry." Fine. We had a lot of cleaning to do before the speech therapist arrived at 9. To vent their frustration, they ran around the house- pulling toys off the shelves, scattering dirty clothes down the hallway, pushing each other into walls, smudging every inch of glass in the house that might possibly have been clean.

Super.

I turned on Signing Time to distract them, and tried to finish my chores before therapy. Signing Time magic lasted for......thirty seconds. While I was gathering the house trash, back in Carter's room and wondering if it was legal to create diapers that smelled this horrible, I noticed an eery silence. Carefully balancing the overflowing trash bag, I walked back through the house looking for them.

Of course since Mommy served them such an unacceptable breakfast, it makes total sense that they would feel the need to fend for themselves. And of COURSE this "fending" would include the brand new, very large box of Cheerios that I opened just that morning to give Addison her pre-breakfast snack.
While I stood over the mountain of cheerios, in a bit of wordless shock while watching the twinsies crush as many as possible as quickly as possible, I tried to figure the best way to clean this up. Carter Henry had hidden my broom dust pan a few weeks ago (we still can't find it) and no doubt this would fill up the vacuum bag super fast since there were no fewer than ONE BILLION Cheerios being speedily spread all over the house by tiny, sticky feet moving way too fast.

I tried to sweep them into a large pile, but with every stroke of the broom, two children tackled and spread the delightful floor breakfast while shrieking with glee. When I instructed them otherwise- they both miraculously and instantaneously lost the ability to hear. I finally stopped and just waited for them to leave the room so that I could clean this up in peace.

My patience was eventually rewarded. Once again silence and peace. But then I realized it was TOO silent. I heard the toilet lid being lifted, and I ran towards the bathroom shouting "NO!" But it was too late. Of COURSE they needed to wash their hands from all the Cheerios and of COURSE the toilet was the best place to do this. The fact that Carter was seconds away from dipping my hairbrush into the  mix as well was only icing on the cake.

While scrubbing down tiny hands that felt the need to do some "stirring", thinking of the piled laundry on the couch I hadn't even gotten to yet, the large mountain of Cheerios still in need of assistance, the therapist arriving in mere minutes, and the total lack of connection that I felt with my children this morning- I was frustrated. And felt like I had it WORSE THAN EVERYONE ELSE. And that the day at 8:30am was already GONE. RUINED. DESTROYED.

The magic of Saturday night was gone. The breeze was gone because it was now cold and the heat was turned back on. The smell of baking homemade pizza was replaced by the sour smell of the bag of trash that still hadn't made its way outside. The euphoric happiness was replaced by frustration and fear that life would never grow beyond this. The feeling of completeness was replaced by a feeling of brokenness.

But after the therapist arrived and both children were her captive audience- giving me a half hour to finish up a few things without two 30 pound ankle weights, I stopped my petty whining. And decided to be thankful anyway. Even if the events and atmosphere of the morning weren't as divinely perfect as Saturday night.

Thankful for the vomit. Thankful for the stubbornness of my children. Thankful for the Cheerios mess. Thankful for the toilet play. Thankful for the overflowing clean laundry that I was folding.

Because I am still making a home. And this is all part of my home. The good, the bad, and the smelly. As the keeper of this home- I am thankful for the strong signs of life. I am thankful for the ability to laugh and keep going. I am thankful for the chance to step back and figure out how I can teach these new things to my charges. I am thankful for the endless entertainment provided me by the troublesome twosome. I am thankful that someday this will be a distant memory to torture them with in front of their friends.

I am thankful

because I am making a home. And it is a good one- even during the rough mornings.

Friday, May 10, 2013

Just Another Day

It's hard to miss the fact that this weekend is Mother's Day. A day which means so much but in reality means absolutely nothing. It's just another day. Another day to do my job. My job as mother.


This job is easy in its simplicity and yet harder than anything else I've ever done before.

It's boring and yet entirely fascinating.

It's frustrating and yet the source of great love and peace.

It brings out my greatest insecurities and yet makes me feel like I have achieved like nothing else.

It's hilarious and yet heart breaking.

It's isolating and yet always surrounds me by two little people.

It's never ending and yet time has never flown by faster.

It's messy and yet bright and shiny.

Motherhood is a job that is mine. A job that I don't deserve. As I think about Mother's Day, the only emotion that truly makes sense to me is thankfulness.

Extreme thankfulness for the good and the bad. The boring and the exciting. The pretty moments along with the ugly ones.

I am thankful for the little ones who make me a mother, the precious days that I get to spend with them, the moments that I will cherish forever, the small arms that wrap me in a hug, the lips that give slobbery kisses, the bodies that snuggle up close on my lap with a book, the chubby hands that carefully hold mine while we walk.

Mother's Day is just another day to do all of these things. Just another day to celebrate the blessings that I have been given and wonder- how did I get so lucky? 

To all of you- I wish you a happy Sunday of thankfulness for the unique blessings that are yours. The perfectly designed path that holds both parts good and bad and yet overwhelmingly is the right one for your now.

In honor of this weekend, Diapers, Onesies, Stretch Marks- Oh My! is free today and tomorrow.

Monday, May 6, 2013

The Straw That Broke The Mainstream Camel's Back

In my teeny tiny life span as a special needs mother, I have heard:

"I don't want my child to go to that program. There are SPECIAL NEEDS kids in that program! They will totally slow down my genius Johnny's progress!"

and

"I don't know if it's a good idea for sweet Susie to be in that program with typically developing children. It will hurt too much to see everything she's NOT doing compared to them. Plus, I'm not sure she can keep up with the fast paced environment. What good will it do her?"

I feel inadequate to write about the topic of mainstreaming in education at this point in my life since I haven't truly lived it from the parent's side. But in my experience with this little subset of students living with me day in, day out- I have noticed something that I would be remiss if I didn't share.

Let me back up for a minute. 

We have provided every available opportunity for Addison to be in therapy. Speech therapy, Physical therapy, Occupational Therapy, Behavioral Education Therapy. Those that have followed us for any length of time know that for three years, we had these four appointments almost weekly.

We have had the best of the best work with Addison one-on-one. Teaching with creative strategies, writing up long notes with observations of her strengths and weakness, discussing in great length her next goals, pushing her where she needed to be pushed, waiting where she needed to be waited on.

One of the big things we worked on with her OT was learning how to drink out of a straw. Addison was born with extremely low muscle tone around her mouth. I remember the NICU doctor telling me the morning of her g-tube surgery that hopefully SOMEDAY she would be able to enjoy food by mouth since it was one of the simple pleasures of life- but we would have to work very hard to get there...if at all.

Her very first OT was the one who helped coach me through teaching Addison to drink out of a bottle so that we could have her g-tube eventually removed. Then her next OT worked with me on trying to find a sippy cup that she would tolerate. Addison would take liquid in her mouth and then most of it would escape out the sides of her mouth before she could swallow. Alongside the cup work, we consistently kept going back to the straw- trying to somehow get this to work for her. Nope and nope.

Enter: Carter

Carter does not have trouble with low muscle tone around his mouth. In fact, lead him to a straw and he will hover vacuum up any and all liquid with a flourish. Well, back up a little bit more. It was when he started switching over to the sippy cup that Addison decided to make friends with a sippy cup (she did the best with the ones she stole from Carter). But since these sippy cups were really just tip-back-and-swallow types of deals, I didn't get too excited.

In Addison's IEP meeting last week, her OT was saying how Addison was doing so well out of an open cup (losing less liquid out the sides of her mouth) because of her good work with the sippy cups, but since she still would only bite the straw, we were just going to move on for now. Clearly, the straw and Addison were not friends and might never be.

The last few weeks I have had a bit of a thing for McDonalds strawberry banana smoothies. McDonalds is the only thing close to our house with a drive through, and this smoothie is one of the few things that I like there. 

Carter Henry learned very quickly that with minimal begging, he could participate in the goodness with a few sips out of the shared straw. When we were out and about, it was much more difficult to share with Addison. I would open the top of the cup, but Addison would end up getting it all over herself and it was a giant mess. Let's say it was one of the inconveniences I referenced in my last post. (JUST USE A STRAW ALREADY!!!!!!)

But what I didn't realize was that Addison was watching Carter. Even though she didn't express it, the mess must have been frustrating her as well because she was searching for an easier way to get that delicious smoothie in her mouth without wearing half of it.

To my embarrassment, I have to tell you- I had given up on Addison using a straw. We had worked so hard with much professional help- and her mouth just didn't seem capable of that kind of strength. So for the past few months I haven't worked with the straw use at all. It was too exhausting to keep teaching something she clearly didn't want to learn.

So Carter Henry took over with the lessons. He didn't realize it. He didn't plan it. He just did his thing- living with ease- sucking from a straw at every available opportunity with appropriate "mmmmmm"s and smiles of glee. While his student watched carefully, plotting and planning how she too might do this strange thing with such huge rewards.

Saturday was a very full day for us. We had lots of appointments and parties that caused a day of running around town. It was also a very hot day. What did this mean for a quick pit stop between events? A strawberry banana smoothie, of course.

I was sharing with Carter, eyeing Addison and trying to figure out a way to do this without getting her super cute her outfit covered in stains right before the next party. Tired and not willing to fight, I just stuck the straw in her mouth, expecting the usual biting and attempt to pull the straw out of the cup with her mouth.

You can imagine my shock and surprise when she quite calmly and effortlessly did this:
Oh.My.Word.

An onlooker wouldn't understand why such a simple act by a cute little girl would cause such a jaw dropping response. But the truth is? This was huge.

Did she just store up all of that teaching and decide one day to just give it a go? Did Carter really teach her? I truly think it was an equal combination of the great teaching she got plus her peer teacher that gave her the confidence to finally master this skill.
And that's where I bring this all back to mainstreaming education. If this was an isolated incident, perhaps that application would be a bit of a stretch for this story. But the truth isn that I have seen this happen over and over and over again in different ways in my children's interactions. This specific story finally let me put my finger on this concept in an explainable way.

All of our children have different strengths and weaknesses. Carter's and Addison's strengths lie in entirely different places. Watching them adjust from teacher to student to teacher again is an amazing dynamic that benefits both of them.

I want Addison to be around as many typically developing peers as possible because that is a key ingredient to her learning process. Watching. Observing. Learning details that she can use later on her own.

You never know when your child needs to be taught by their peers...or learn. Just because your child doesn't have a disability doesn't mean that they don't need to learn things like- patience; kindness; treating others how they want to be treated. And those fabulous skills that your child has? Maybe there's a reason they have them. Maybe they have those skills to help teach another child how to get there faster. You never know.

As we get deeper and deeper into the education system, I'm sure my perspective and thoughts will change and shift many times. But one thing I'm sure of? Addison will learn from therapy; she will learn from me; she will learn from her educational DVDs; she will learn from school- but most of all? She will learn from the peers in her life who model the things that she struggles to achieve.

I hope you aren't the parent to refuse to let your child into a program as to not be "tainted" by the special needs child in the program. I hope you see that instead for what it really is- a chance for your child to teach and learn in a new way.

Carter did for Addison in a few weeks what I (and many therapists) couldn't do over the past three years.

Can't wait until Carter is potty trained.

Friday, May 3, 2013

Disability is Inconvenient

I've had a rather bad attitude about Addison's disability lately. Don't get me wrong. I love her. I love her dearly.

But lately as Carter has been crossing over that hump of easy-going toddler to devil-toddler-you-can't-take-your-eyes-off-for-a-second, I just feel that it's a bit unfair that not only do I have him in this difficult phase, but Addison is right there with him as well.

I think to myself- come on. I have poured myself into her for three years. Therapies, positive attitude, work work work- isn't it time that she "snap out of it?" Isn't it time that she wake up and say "Hey! I'm three years old! Time to start growing up!"

She is very young for her age. She acts young, she learns slowly, she operates much more like Carter's age than her own. And while having them close in age is a huge blessing and wonderful learning tool- it also is very difficult at times to mother their separate learning curves- in the same difficult stage.

With this bad attitude clouding my mothering, I've recently stopped and wondered "WHY am I mothering?" What is my purpose in teaching them to grow up? Is my end goal for them to be the children that I think I deserve? Is their level of ability supposed to equal my level of work?

I think of the people who so vehemently say that individuals with disabilities don't deserve life because their entire existence will be inconvenient. I think of those who look down on those who can't function on the same level as themselves simply because they are lesser in ability and therefore assumed "lesser in worth."

I think about the life that Addison has in front of her. I'm sure that the inconvenience has only just begun. I see how quickly Carter learns and how he effortlessly sails into the next phase of life while she struggles just to maintain the one she's in.

I see how it's supposed to be. And I grieve the inconvenience.

Selfish? Yes, it is. But honestly in order to realistically press forward, sometimes I need to stop and grieve. Selfishly. As I think about ME and what this means for MY LIFE and how I hate to see her struggle over things that are supposed to be so easy.

And then I grow up. And remind myself- it's not about me at all.

Motherhood is not about the mother. It's confusing because the very word "mother" is in the title. But on the very day that all of a sudden that day is strangely all about the new existence of this tiny person instead of all the work I did "laboring" this person out of me....it is no longer about me- the mother. It's all about the ones who make me a mother.

When I think about mothering a child with a disability- when I get a bad attitude about the lack of progress, the extra work that I have to put in- I remind myself of this truth.

And when my focus turns from inward to outward, suddenly this doesn't seem so hard.

When it's not about ME and how this affects ME- serving becomes a privilege.

Especially when it comes to a beautiful little girl who loves life, who communicates volumes through her smiles and hugs, who thrives at school, who participates right alongside her brother in everything, who can make a horrible day suddenly better through whispered chatter.

She is delayed. It is inconvenient. Sometimes this makes me quite frustrated because it seems like my work with her is going nowhere.

But that's when I'm thinking about what it all means to ME.

When I think about Addison- and what life means to her? Helping her check that next thing off her milestone list is exciting. I don't care that it took us an extra year and a half to get there when I get to see the look of pure bliss on her face along with her constant enjoyment of living a good, well-deserved life.

When I think of someday strangers looking at Addison as an inconvenience to society and lesser in worth because of her ability? It makes me sad that those same people won't see everything that she IS doing and how hard she worked (and succeeded!) to get there. I wonder why the world views disability based on how it will affect THEM, the outsider looking in, instead of the other way around.

I would say that "love doesn't see inconvenience." But I love Addison so much it hurts, and yet at times I still get frustrated by the extras. I think love DOES see inconvenience- but it doesn't change a thing in the intensity and amount of love given.

I am a flawed mother on so many levels. So many times I hear "Wow you are so amazing- I don't know how you do it!" and I think "if only you knew."

I am selfish. I get frustrated. I get annoyed. But then I remember I am a mother and serve accordingly- even when it means sacrifice to myself. Not "amazing". Just a weak vessel doing the job I was designed to do.

I don't think that my effort into motherhood will be equaled in achievement of my children. I don't think  my job is to push my children to be what I "deserve". I don't think the "why" of motherhood  is as important as the actual "doing."

God has blessed me with two beautiful, perfectly created children. My motherhood definition is to meet them right there where they are and mother (serve, teach, nurture) to the best of my ability one day at a time.

Even when it is inconvenient.
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