Beyond Awareness

October is my favorite month of the year for many reasons; Halloween, pumpkin flavored everything, football, apples and cider, a chill in the air, turning leaves, hay rides, scary movies, footie pj’s, and tights. So here it is, October 1^st, and I’m enduring an internal debate. I’m exhausting myself (as per usual).

This month highlights awareness campaigns for Down syndrome (DS), domestic violence (DV), & breast cancer. These 3 are big in my world and 2 of them have had great success in making us aware. Thanks to recent news surrounding the NFL, DV is finally starting to get the attention needed for real change. I pray the world doesn’t get bored and move on.

As I think about how I want to honor DS I can’t stop wondering, “what is normal?” What does it mean to be low or high functioning? What does a typical family or typical existence look like and how is that so different from my own? Disability is normal. It is a part of the human experience whether it happens prior to birth or later. Whether it is 'cured' or managed.

Everyone has challenges. Everyone. Sometimes they are financial. Marriages fall apart. Families are blended. Single parents do the work of a village. People lose jobs or get diseases. Those living with mental illness are stigmatized and are failed by a broken system. Our LGBT community still fights for fairness within the law and for the right to walk down the street without being brutally assaulted or shunned by our families. Addictions and sexual assault are commonplace. Sometimes through accidents or illnesses our loved ones pass away too soon all the while we continue to get older every day. Which of these are abnormal?

Awareness campaigns come from a wonderful place. When you are aware that early detection can increase your chances of surviving breast cancer, you’re more likely to feel your boobs and see your doctor. When as a society we begin to hold abusers and sexual assaulters accountable for their actions, survivors will be more likely to seek help and hopefully violence will lessen. When we tell you that language has power, those with compassion choose words that don’t demean. The invisibility of Autism dissolves as others comprehend public meltdowns.  As we continue to demand equality, our kids with special needs will receive the supports and services they need to thrive in school and in the community throughout their lives.

Those of us involved with Down syndrome awareness open our lives to the world. We let you into our private spaces to witness the gold, the shit, and the mundane so that we are no longer outliers, invisible pariahs and therefore irrelevant or scary. We strive to create a society where normal means acceptance, inclusion, equality. In doing so we support others facing similar challenges. We aim to make the world a safer place and I know we have.

And yet I’m restless. I’m beyond awareness. I want revolution and I want normalcy. My life’s work is to battle loud and fierce regarding; housing and program wait lists, budget cuts for education, supports, and services, funding and access to disease cures, legalizing medication that is long overdue, rights for all regardless of ethnicity, genitalia, religion, or who we love. I dream of a time when all of us are normal, where knowledge and understanding are so commonplace that what currently makes us outsiders will be nothing more than attributes to describe our existence to one another.

Last Day of School 2014

Yea, though I battle through the valley of the shadow of IEP season, I shall fear not using the Procedural Safeguards: for the law art with me.

With a brutal winter and a ton of snow days, our school year ended even later than it typically does.  It is with great joy that we have entered SUMMER. 

This IEP season for both kids has been the most difficult to date.  Countless IEP meetings in person, via email and by phone could not resolve differences in opinion between our family and our district.  Hiring a great attorney changed all that and with her help we are finally moving forward in a way we can support.

I’m not litigious and pride myself with my negotiation skills, so it is no small thing that we are ending this school year and entering ESY for summer with 2 settlement agreements.  I did not want to have it go to this level, but our core belief in inclusion, FAPE, and LRE just didn’t line up with our district’s plan for educating our 2 kids with IEPs. 

Despite our disagreements I continue to believe we have a fantastic team of teachers and therapists who believe in our kids.  When you have as many team members as we do, you have to get creative in order to be thrifty with thank-you gifts.  I ordered these extra large soup mugs in November intending to use them as holiday gifts, but then I had spinal surgery and they sat in boxes.  I’m pretty happy with how they turned out.  Mark helped me package them in cellophane and ribbons and dropped them off.

In any case, I’ve learned so much through advocating for our kids and I am more determined than ever to make systems change.  I’ll just need a little time to recover.

Welcome to SUMMER - rising 4th grade boy and 2nd grade girl!

For Sophie

The wound that never fully heals, sighs as

I dared to lay down its protective armor hoping

for a moment’s breath without the weight of it

when Ignorance launched a stealth attack.

 

I am just One but I am fierce. And I am weary.

Stinging, raw pain threatens to bring me down and yet forward.

You gaze at me with beauty, resting in the safety of my arms

which are too weak to protect you always.

 

As your accidental warrior thrust into the fight

you trust me to be your voice. Failure is not an option.

I’ll never stop. My hands shake with rage or despair

at the indignity of the battle that cares not if I need rest.

 

I speak out but it is your strength that feeds me.

You deserve nothing less than everything.

When I falter, legions rise to carry us through the task.

I am One but we are countless in our numbers.

 

No darkness can survive your light.

Every cell of you is love that you give away to all

blessed to cross your path.  Drawn to you,

we are forever altered from touching Grace.

 

The truth of your lessons cannot be denied.

We’ll win them over Baby, for your message is timeless.

I am your accidental warrior and you are my tiny teacher

changing the world with your gentle, forgiving embrace.

Preschool Blues II, A New Day

First of all, I want to thank all of you who reached out to offer your support when we had a no good, very bad 1st day of preschool. Family, friends, and perfect strangers left notes of encouragement on the blog, fb, and texts showing that they are standing with us. I can't express how much I really appreciate that. Friends who have been here with their children (with and without a disability) reminded me how this is truly a shared experience and that letting go is hard but we all survive and are better for it. I've received messages from people who are wondering how it went today. People who care about our little preschooler and who have been waiting patiently for an update.

Yesterday I had a good conversation with her lead teacher and we came up with a plan. I learned that she really did have a good day up until they went outside and she overheated. As our high temp is 98 degrees today and they would not be going outside, we didn't have to implement Plan B, C, D, or E.

I didn't stay for more than a few minutes when I dropped her off. She was happy to be there and I was happy to slip out the door unseen. As planned, I arrived early (just 15 minutes) and peeked through the door to the gross motor play room where her class was playing. What I found was a happy, active girl who was having the time of her life. Her brother, sister, and I waited in the hall for class to end. She caught me lifting Alexander up so he could see through the window, so we went in to say hi.

There were tears when we left but they were because she didn't want to leave. Sophie is going to rock this school!

Preschool Blues

This morning I drove my 3 year old beautiful, funny, loving daughter to her first day at preschool. Her classroom has a mixture of other children with Individual Education Plans (IEPs) and children who do not have IEPs. There are two teachers and the lead teacher has a Master's in special education. It is a wonderful school. On our tour, Sophie loved it and was angry with us when we had to go. I had no doubts that my little social butterfly would do well there.

I knew this morning would be hard on me, letting her go. Parents all over the world are going through their own child's first day of preschool, kindergarten, college. Letting go is harder on us then on the kids. We leave a piece of our hearts in their backpacks as they board the bus or as we turn to say goodbye and try to make it out of the classroom before we can no longer hold back the dam. Parents of children with special needs aren't any different in this way from other parents. Except, I think, we are.

For me today wasn't just about my baby girl taking a big step towards growing up. Yes, all parents have to trust that the schools will do right by their children and keep them safe from harm's way. However, when you have a child who has a developmental disability and is nonverbal or like Sophie with a very, very limited vocabulary, this ups the ante. We don't just worry about whether or not they will be afraid once they realize we aren't there, or if they will make friends, or participate in the activities. We wonder how on God's green Earth we will ever know. Will I know if a child is picking on her or the extreme case if she has a teacher or aid that is dangerous when she can't tell me? Monsters like this are out there and they target our kids, a fact that keeps me up at night if I allow my mind to go there. The trust ante is up when we send our kids to school and so is my anxiety level.


This morning when we were walking in her classroom another little student said, "Hey you can't come in here. You're not our friend!" I introduced him to Sophie and the teacher explained that it was time to make new friends and that Sophie was their new friend. That settled the matter. I had to laugh at myself (in my head of course) for allowing a 3 year old to briefly rattle my fragile cage. Sophie jumped right in and began exploring and playing. She didn't seem to need me in the slightest. I didn't want to be the mom who hovers when her child is just fine, so I snapped a few pictures and let her take this giant step towards independence.


Three hours later I returned to pick up my big preschooler. Her class was outside on the playground and I snapped a couple of pictures before really looking at her. What I discovered was that she wasn't the curious, happy little girl I had left 3 hours ago. Her skin was the shade of bright pink that she gets when she has over heated (pictures do not do it justice). My child cannot tolerate extremes in temperature or direct sunlight for very long. She was just sitting there, like a lump. Her lethargy and skin coloring was not good. It hadn't even occurred to me to warn them that even 10 minutes in weather like this can be too much. (enter panic, guilt, anger, worry) I think I was especially taken off guard because when I left she was doing great. In the past Alexander has had off days at preschool, but they were always at the beginning, not the end of the day, so I expected to find a happy girl.

I spoke with her teacher to ask how long they had been outside, which she assured me was not very long. I explained that she needs to be watched carefully in such bright light and heat and she too became concerned. She got Sophie a glass of water (which she didn't drink) and said something about making sure to have water outside in the future. I was barely listening. She told me that Sophie loved music time and playing instruments. Of course she did. She's a big music fan. They played with playdough and "she lasted longer than she expected." I didn't ask how long that meant because I was ready to run for the hills, my baby in my arms. "She didn't care too much for story time," which I said surprised me as she loves books. The teacher thought maybe it was because it was a group activity. hmmm? No time to talk. Gotta run away now.

I carried my limp ragdoll to the car and then she lost it and she didn't stop screaming and crying for an hour and a half. Crying in a way that I have not seen, maybe ever, certainly not without a painful injury. I was barely able to get her to drink juice and lunch just wasn't happening. Through her sobs I heard her cry "Daddy" over and over. She wouldn't let me put her down for more than 90 minutes.

My daughter's few words aren't enough to explain to her momma why she's so upset. Was she just overheated and cranky? Was she afraid when she realized that I wasn't there? Was she upset because she didn't understand what today was about, that she's in preschool? Was she worried that I wouldn't be back to get her? Was it all just too much to take in? What happened?

She can't tell me. My child was so distraught that only Skyping Daddy at work and then watching her favorite show Yo Gabba Gabba finally dried her tears and got her off my lap. I felt panicked at my inability to calm her, to understand what was in her mind and heart. I'm angry and I'm fantasizing about either withdrawing her from school forever or sitting in every class until she's 22 years old. Neither is the right option.

My new but already very cherished friend Mara's Spidey senses were tingling and I got a text from her asking how it went. When she didn't like my reply she called me right away and talked me down off my emotional ledge as only true friends can. She let me cry and whine. She told me about her daughter (without special needs) who had thrown fits of gargantuan proportions for 3 months when she started school. She reminded me that her son (who has Down syndrome) will be starting preschool soon and I might need to return the favor if she loses it. She helped me remember that Alexander had his awful preschool days too.

The thing is, I get that all children, typically developing or not, have their own ways of processing change and adjusting to things like school. For me the heart of my pain lies in our communication barrier. It is true that other 3 year olds may have a hard time expressing their feelings or even understanding them, but it is different when you have a child with special needs. It just is. I don't say this to garner pity. Parents of children with special needs do not need that. We need phone calls, understanding, humor.

Sophie finally calmed down enough to eat at 2 and fell asleep at 2:30. We have a day off as she doesn't go back until Wednesday and I'm already coming up with a plan for how to be better prepared, for the both of us.

Blocked

recommended listening for this post, Soundtrack of Our Lives playlist #5 on the sidebar. Scroll down, click play on #5 and then come back if you like.

Without rain flowers cannot bloom.

I know if it is going to be a dreary, soggy day before I open my eyes. I can feel it. Weather like this shapes my mood before my feet hit the floor. While a good thunderstorm is soothing and clears my head, rain without a storm tends to bring about melancholy. Yesterday was such a day.

The rain wasn't going to help the restlessness in my soul that I had been battling all weekend. An impromptu dinner at our house with our neighbors Saturday night temporarily broke my cabin fever. Adult conversation, good beer, and home-made hummus from our new friend (a chef) had gone a long way to shake me out of this reverie. Waking to rain washed away that reserve.

I couldn't stomach the thought of spending the day indoors, ignoring the 3 baskets of laundry that that were sorted and stacked days ago. I knew I'd lose it if I spent one more second on fb with the tv set to Nick Jr. in the background. As Mark is the greatest husband on Earth who understands me sometimes better than I understand myself, without hesitation he agreed that I needed to get out of the house, alone.

An over sized umbrella and camera in hand, I walked up the road to catch Julia in Eat Pray Love. I hadn't been to the movies by myself in a long time and this seemed like just the flick for my state of mind. In EPL, Liz finds herself on her bathroom floor weeping and praying for direction which leads to a life altering journey. Now, I'm not there, but I seem to be on a quest without the foggiest idea of what I'm searching for. In the Artist's Way (a life altering book that everyone should read, seriously) we learn that we are all artists and that when we deny our creativity we become blocked. When we are blocked we are denying God's work through us. My name is Jen and I am a blocked artist.

Through the camera I tried to snap my way out of this slump, to create - something. I walked, soaked to the bone in the warm summer rain, seeking inspiration. Mark is teaching his first class at his new university today. Soph is starting preschool next week which will be her first real step towards independence. Kindergarten starts really late here (mid-September), but Alexander too is at the beginning of a new adventure. It's time for me to figure out what I'm going to do before I end up drunk in the street, crooning like Mr Bean to 'Yesterday' or to Reba's 'Is There Life Out There.'

A mother to three little ones only has so much time for such self indulgence and examination before needing to hike up her big girl panties and buck up. This is especially true when the youngest is teething and needs to be held and comforted. So, I whispered a hasty prayer for direction, to find beauty in the rain, and headed home.