Momma Monday: Let’s think about the word special

Stop me If I’ve told you this already. When I was in grad school getting a masters degree in social work my focus was on working with people with developmental disabilities. There was one class I had to take that the special education majors also took. I couldn’t even tell you the name of the class anymore. I’d have to find a transcript to label it. What I remember from that class was a girl who was working very hard to get the point of inclusion and that we are all the same in that we all have unique needs. I know now she really was trying, she was working hard. And now I appreciate that. At the time, I didn’t. During one class, she raised her hand and boldly joined in the conversation, proud of her epiphany, ” We all are disabled.” Hands shot up all around her and I couldn’t help my self. “No, We all have abilities.”

See the difference? While both are intended to be a step further towards enlightenment and understanding and acceptance of all people. Her version still had a negative implication. And as minor or politically correct as you may think it is- the difference matters. And let me stop right here first and say, yes- I do get that at least she got one part of the equation that a vast majority don’t. She got that we are all have the chance to fall into that category, that label, that stereotype. That just because you weren’t born and diagnosed with a disability, doesn’t mean you get a free pass at some so-called “perfect life” free from all hardship. Genetically something could be hiding. Is there anyone in your family that has had cancer, heart disease, a stroke, a mental illness or diabetes? Then yes- you too might be genetically predisposed to one of these diseases. And yes- you may cost the medical community time and money down the road. Maybe you’ll be able to manage it and it won’t have severe consequences and maybe you won’t. That’s yet to be seen. I could go on a tangent here about the diagnosing and eliminating prenatally of Down syndrome and where ethically we draw the line. Is it with people who show genetic markers for cancer, for multiple sclerosis, for diabetes, for blond hair, for a lack of math prowess, for someone who will take up smoking, someone who has a chemical imbalance and is prone to depression,  someone who will sponge off their parents and not make their own way in this world? That list could go on and on. If you think you have a right to life but someone with Down syndrome doesn’t, you best think closely about your loved ones and which of them fall into these other possibly identifiable categories. Now we can see the gene for breast cancer- so do they get to live? Aren’t they are going to cost the medical community a bundle as well?  Mind you- I’m saying this isn’t a good thing- this ability to start euthanizing at such an early notice and making so-called “socially perfect people”. Because trust me- human nature will find another line to draw between those that remain.

But I digress, hugely from todays point I want to make. The Special Education major. Obviously her heart was in the right place. She wants to help people. But to me there was still a thin line of work for her to cross over. She still was looking at people needing assistance at a certain level of any kind as different and negative. The word special, in spite of its definition, in terms of Special Education, is viewed as identification of challenges and how to we work around that. When people refer to a special needs child- they usually aren’t referring to the child who shows an astuteness in math, or violin, or art, or writing. But according to the definition of special- those children would have special needs as well. But with the actual definition of special- and here is where I’m getting to my point of the day; according to the actual definition of special- those children have special needs as well. They have a quality, an inclination, a natural talent, that is readily distinguishable from the larger population. They have an area that their parents believe, if given the proper attention, their child will find great joy in, will flourish in, will do like the natural they are. And so their parents send them to math camp, to private violin lessons, to the Governor’s School for Art, to the Iowa Writer’s workshop, they agree to have their child participate in the schools gifted and talented program so that their little Einstein can have his abilities challenged.  And guess what happens- they do well. They flourish. They learn so much about that area. They do it beautifully and naturally. But wait- it wasn’t just natural- it was a gift that was honed and refined. With the gifted and talented program our tax dollars went to fund because we believe it’s a good thing to help children get ahead. That’s special isn’t it?

And then there are the run of the mill “special areas”. Have you ever found yourself discussing any of the following topics with your other mommy friends either on-line or in person? Little Tommy isn’t sleeping well- anyone know of a good book on sleep? Little Timmy only says 6 words out loud but we are looking up information on signing- they do that at daycare and the kids love it! Little Betty is tantruming- I need to read some discipline books- or anyone have any ideas about what works best? Little Mary is such a picky eater- I make her separate food every night. Do you make your own baby food? Do you make a point to only buy organic? How do you potty train your child? Do you have a child that is allergic to peanuts? What crafts can I teach Bobby to do? How can I teach Molly to site-read? I’m going to home-school- I want to be sure I know what my child is learning- and I want to be the one to teach them. When you go to the restroom in Target does your potty-training 2-year-old start hollering, “Poopy diaper, Mommy has a poopy diaper!”  When you go to a restaurant, do you spend time teaching your child the basics of good manners- not to scream, run, throw food, use their inside voice?”

My point here- is that we all have versions of what we want to teach our child. Often modern-day, information-gathering, read-a-holic mommies and daddies, devour the latest philosophy and trends in the best approach to teaching our children. I do that. With my oldest- Zuzu- who is a newly minted 3-year-old, I have spent the equivalent of a PhD program’s research requirement in learning about her and her development and needs. I have an arsenal of parenting books- from a set of sleep books, emotional development, feeding and nutrition, discipline, health needs, attachment parenting, esteem building, raising a girl and learning to sign and communicate. What are the best toys- developmentally should we just use Waldorf style- imagination focuses, or bright lights and music stimulating toys?  Prior to that when I was pregnant I bought an arsenal of pregnancy books- pregnancy week by week, month by month, natural and high-risk care. Then came the birthing books- natural child-birth, hypnobirthing and c-section preparation. Then came the breastfeeding books, the pumping books- The Nursing Mother’s Companion, The Working and Nursing Mother, The Tandem Nursing books. Then after a few positive pregnancy tests (yes I mean a few- cause of course as you POAS-a-holics understand- if one test says you are pregnant, you best take 5 more just to be sure) along came the sibling relation books and how to help your first child adapt to her new role and know she is still loved and accept and bond with her sister. And of course along with all of these different topics and the technical knowledge I wanted personal stories. So on-line I went to hear what others were going through, what other’s were doing in their pregnancies- the birth forums, the blogs, the essay collections and a little fiction when I could find the time.  I also had 2 miscarriages before Zuzu- so more reading, more learning about how to make an egg stick and grow into fruition.  What caused my miscarriages, what tests did I need to ask for.

Sounds like I considered Zuzu pretty special don’t you think? She had needs, yes. And she is special. I spent an inordinate amount of time reading and researching what the best method for every little inkling in her small world would be. But that’s my personal style. I know lots of well-meaning, loving parents don’t spend all their free time with a nose in a book. And that’s ok too. But that isn’t me. Then along came baby number 2. And guess what- she is special too. And so I read about Down syndrome- about what to expect, about what will come and what it might behoove us to focus on at different stages of development. So I don’t get to be lazy this second time around. But knowing me and my preference for books and learning- it really isn’t any different. Both my children are pretty special. And my guess is if you are still reading this you find your child pretty special too. So aren’t we all more alike than different? Can you see that now?

Some people say having a “special needs child” (in the traditional sense of the word) is so hard and challenging. Well I would speculate that in the glass houses theory of how we are all prone to view others- someone is saying the same thing about your world. Someone is saying, “I wouldn’t go on to try to get pregnant after one miscarriage, after 2, after a failed adoption, after having one child, after it turned out you needed a c-section, after having grown up in an unhappy home, after my uncle had schizophrenia, after I only got a middle-income job, after I lost my job, after my partner was assigned to active duty, after I decided I would rather raise dogs, I couldn’t be a single parent; I would rather go to school, I can’t afford more than one child and staying home. I would rather spend my time doing what I want to do, after meeting my sister’s kids, after meeting my neighbors kids, after seeing your child flinging noodles at the restaurant last night, your child eating cat poop out of the sandbox at the park, after seeing your child eating non-organic mixed meat hotdogs, your child needs glasses, your child died, your child got sick, your child has x, y, or z. I couldn’t handle that. But hey- I can handle my own situation. I am grateful for my own life. Well that’s good. Be grateful- love your own life- but you don’t need to speculate about how you know you couldn’t handle my life. Because frankly- I probably couldn’t handle yours either. Or maybe I could- if it was my life and I was invested in it.

I say all of this because families of children with traditionally defined special-needs children aren’t to be pitied. They don’t want anyones pity. Maybe one day they are having their own private pity party and choose to share it- but don’t you have days that you have a pity party as well? I won’t take the time to conjure up another round of ordinary situations that might be construed as frustrating given the right circumstances here. I’m guessing if you have now read this far along you get the point.

The point is the perspective. The attitude, we become our thoughts. If we think negatively about a particular circumstance in life- then yes it becomes negative. I guarantee you somewhere in this vast world or at some point in time there is someone else in the same technical circumstances but the difference is they rose to what you perceived as a challenge and learned, and went on in life. So we don’t all have disabilities. We all have abilities. It’s how we look at it, approach it, think about it and define it that is the difference between you and me. Or maybe not. Maybe you see it the same now too. Maybe we are more alike then different.

** for a more articulate version of my point in relation specifically to Down syndrome- pop over and visit Miriam and read what she has to say.

Gratitude Journal

IMG_06661. a steaming plate of hot ravioli with a lovely primavera cream sauce and fresh mozzerella!

2. a dinner out with the family that is fun for everyone

3. a healthy baby

4. her caring big sister

5. a gorgeous sunset with the smell of fall tinging the air

6. a lovely color-burst of a sunrise

7. a nursing toddler

8. Lovey

9. dear friends understanding my life

10. dear friends and family loving my girls books

12.friends coming to visit

13. a clean house

14. Lovey’s dedication to his girls

15. grocery lists

16. time to photograph flowers

17. time to think

18. messages from dear friends

19. all the amazing encouragement and kudos I’ve suddenly received from other amazing mommies- Wow- What a gift- thank you all so much friends- Right back at you all! Truly!

20. confidence

21. Christmas music- oh how it cheers my soul- yes- I’m the one they play it for at this time of year and even earlier!

Quail Day- She’s Up & Around!

We are nearing that 9 month mark! I can hardly believe our good fortune in these past few months. As I’ve said before the Quail is pure joy. Our happiness since she has come into our lives is so beautiful, our lives so very full. We can’t even remember what it was like before her- and we’d rather not. A few weeks ago we were having a lovely Sunday dinner and she had already fallen asleep for the evening. So she wasn’t perched in her high chair chortling at us. And it was quiet, even with our dear Zuzu chatting away; what I heard was the silence from her corner of the table. I’m so very grateful that the silence was due to a nap and not other life choices. If we had chosen to move this past year rather than stay put, if we had decided to wait to try for another child till life was easier, if we had received information about her diagnosis earlier on, who knows what the tiniest change in perspective, in momentum in our life might have brought. But fortunately we’ll never have to know. Fortunately, for us- life has brought us this ray-of-sunshine of a girl.  The bond we witness everyday between her and her sister continually warms my heart. 

This past week when the Quail was sick with what appears to be a Triple Crown- the flu, then pneumonia, then a third viral cold on the tail end of the first two. We had to repeatedly ask Zuzu to not touch her sister, to not hug her so tightly, to not hold her tiny perfect hand, to not love on her quite so very much.  We were hoping to prevent two from going down. And while it appears we succeeded; Zuzu would ultimately win each round of affection. Each time after she would respond with her characteristic; “I know Momma, I don’t want to get sick”. I would sneak a glance backward a few seconds later to see her ardently, but slyly still holding her sister’s hand. At that point I would sigh, look away and just go find the wipes. I can’t blame her, trying to not love on that baby is beyond my scope as well. And this little apple-of-a-girl doesn’t fall far from the tree.

She truly seems to be feeling better though. Later today she’ll go in for what we hope is a last check-up regarding the breathing difficulty. This will be her second round of nebulizer treatment in response to an upper respiratory infection. She ended up staying on Tamiflu from the ER doctor after her fever 2 weeks ago spiked back up past 101 for a second time. Then a few days later she was diagnosed with pneumonia; although earlier that week her chest X-ray had been clear. Her pediatrician at that point added on some prednisone, the breathing treatments and a round of amoxicillan. Fortunately the Quail was a trooper about taking her medicine and being sick in general. While she was sleepier then usual, she remained stoic and cheerful and content to be cuddled throughout her week at home with us. I am so very grateful to be married to a philosopher who is able and more than willing to attend to her sick time during the day and share the responsibility of helping her mend and grow.

Our other great feat of the week was in physical therapy- even after having been down for a week she managed to get up on all fours! The first two times she needed an assist to stay in position, the third one she maintained for a bit on her own and by the fourth attempt she pretty clearly had enough. When the PT would get her knees up under her she would prop up on straight arms on her own and one time even reached for a toy.

We’re so very grateful for her returning strength and vigor!

corner view: cell phone madness


Zuzu Day: Swim Classen Report

Swim Classen ReportZuzu finished up her first round of “swim classens” earlier this fall. I was a bit hesitant about signing her up for them for a multitude of reasons. She has tubes in her ears- and although the ENT said swimming in a pool was perfectly fine, I was still feeling a bit post-traumatic about her first year of life when she had ear infections from 7 months to over one year. For her ear infections included high fevers, a sad, weepy, wailing child in the night, an inability to lay flat so she slept in our swing most nights . So much so that Lovey took it upon himself to debunk the batteries and revamp it so that it ran via an electrical cord. Even after she had tubes inserted in her ears she still got about a half dozen ear infections. But at that point they were much more manageable.

Zuzu also has so much spirit- so very much- it’s what we love about her and will translate into pure passion as an adult. It does make typical toddler activities such as story-time at a quiet library and paint-your-own pottery a bit more of a challenge though. We also currently have such a full schedule between Lovey and I working fulltime outside of the home, my commute to and from work and early intervention and speech therapy 2 nights a week in the evenings.

But this swim class was 2 nights a week for a month. We figured we could manage for a month. We had just the few  months previously started taking Zuzu to the community pool on weekend mornings when the weather was uncooperative for park play. She loved, loved, loved going to the pool. It was a good exercise in learning to listen to other adults expectations as well. Each time we would go say Hi to the lifeguard and have her review the “walking feet only” rule with Zu. The kind life guards would get out buckets of toys for water play, a floatee vest and noodle and off we would go! Sometimes on our own and sometimes with a pal or two of Zu’s. The pool is a warm water pool with a 3 foot maximum depth and a 2 foot high bench and stairs running along side it. Perfect for a budding mermaid!

Zuzu loved going to class. She enjoyed Erin and Jared,her teachers,and would get ready each day at school and was bursting with excitement when I would arrive to scurry her off across town for the lesson.  Halfway through the session she discovered the joy and power of telling the teacher she needed a bathroom break, coincidently about the same time it was her turn to jump in for the umpteenth time.

However, we received our report- as noted above and she did excellent- a regular fishie- that girl is! The part of the whole experience that brings me the most joy though is this- the little handwritten note across the top, ” Zuzu loves the water.Each time she gets in, her eyes light up”. How very precious. They do light up- and with so many activities- and what a great perspective- shaper for us to see another’s appreciation for her pure zest for life.  It was such a gift to have another person see that in her. Zuzu loves life- and we love her.