As The School Year Closes...

This past week marked two milestones. Ben completed 4th grade. Zachary graduated from kindergarten. I spent their last day at the school, complete with tissues.

We had to say goodbye to the fabulous teacher Ben was lucky enough to have for two years. In this time, the teacher has taken on the daunting task of trying to figure out how Ben operates. What things set him off? What methods work well for him? And what, (because he will never open up), is making him sad on certain days? The teacher has dealt with Ben saying the same line to him, at the same time, every day for two years. Yes, every day after lunch, Ben repeated the same sentence to him. And yet, he never lost patience. We received hand-written notes daily. As a parent of a child with special needs, this is invaluable! I feel so fortunate to have had this truly amazing teacher work with Ben for two years. I am forever grateful to his dedication and his ability to see the potential and the intelligence in Ben. The best part of the last day was seeing Ben's smile as he participated in a party with his seven classmates. He proudly showed off a K-Nex amusement park they had built. It felt like the culmination of what I have known he needed all along, and all I have tried to do for him. This is what I have most wanted for him above everything else: moments of true joy.

Zachary participated in a darling performance on the last day, complete with a kindergarten-sweet rendition of "What A Wonderful World." I sat through the show thinking that, for all the times the special needs of his siblings take over, we have not done too badly after all. The most tear-jerking part of the performance actually came when Zachary's classmate reached out, twice, to help guide a profoundly handicapped girl through the stage movements. It touched me because I knew Zachary, had he been standing next to her, would have done the exact same thing. Like Ben, Zachary had a great teacher this year! She was just the right mix of kind but firm, and he flourished under her guidance. Much like the gifted/special ed class is perfect for Ben, the regular ed classroom is the right fit for Zachary. In every way, he fits in, understands the work, and enjoys the academic challenges without a need for extra assistance.

I know not every day of this past school year was perfect. I know I forgot to sign some papers and that we missed the boat on a few homework assignments. I know there were times that other kids were mean on the playground and I didn't always know what advice to give. I know that I wanted to be there more. But I think the overall picture was one of success. I look forward to the years ahead, even the looming teenage ones. I feel empowered to weather any storm, because we have done it before. What always comes through in the end is the light.. a small ray of hope that is laced with the best emotion one can feel towards their children: PROUD.

What I Wanted To Say...

Last week, I was asked by someone I know if I ever wish I hadn't gone for the third baby, "since he is so much extra work." The question floored me, and I had to remind myself, as I do often, to choose love over anger. I have to assume the question proposed still could have been laced with good intentions. Perhaps this person was trying, in a strange way, to say that he sympathized with the busy days and emotional overload that comes from raising a child with extra needs. Too shocked by what was uttered, though, I could only respond a pathetic, "no" before walking away.

If given another chance, this is what I would say: I do not ever regret having a third child. The hours spent at therapies or doctors' offices exhaust me, but they are not an interruption to my life. They simply ARE my life. The joy that has come from my son outweighs any difficulty. I would feel this way even if the needs at hand were far more severe than they are. I know this in my heart. Everything he accomplishes is a miracle because we never know how far he can go and it all feels such a glorious surprise when he learns a new skill. Yes, I feel bad that things are hard for him, but isn't life, in certain ways, hard for all of us? And think of this: While he may struggle to run and jump and maintain endurance, he is learning, at a tender age, to stop and smell the roses. He appreciates the shape of a leaf, the feel of a raindrop on his skin, or the warmth of the sun. Truly, the observations he makes about things we often overlook astound me.

Due to some portions of his neurological and medical issues, I will admit that in my darkest hours, I worry for his future. Will his left side always be weak? Will his stomach ever learn to handle more food intake? Will he always walk "funny"? Will he require a wheelchair? Will he live to be an old man? But then I come back to this thought: All that truly matters is now. This moment. This child. This life. This miracle I have been entrusted with.

So it isn't about regretting having a third child. It is about what I would have missed if I HADN'T- which is everything.

Overdue Recognitions

This blog is dedicated to the unsung heroes, the everyday people who silently do great things behind the front lines without expecting recognition. In my house, that would be my husband and my middle son.

Because I am so open here and on other forums about my children's special needs and our crazy daily schedules, I get a lot of nice compliments along the lines of, "You are a wonderful mother" or "I don't know how you do it."

This is how I do it- I have, thanks to my husband, been able to dedicate 99 percent of my mental and physical energies to the care of these kids. We function as a family because I am not worrying about cleaning the house or cooking dinner while I shuffle the kids to therapies or medical appointments. If dinner does happen, it is usually via the crock pot, but if it doesn't, no one complains. I am also able to mentally "check out" a few times a week to listen to music, go to a movie, get coffee with a friend or read. My husband understands that these things are necessary. Sometimes, even after working a full day at the office, he allows me to relax while he makes dinner or, better yet, takes all three of the kids out so I can have a quiet house for an hour or two. He also takes his turn with some of the medical necessities, taking our oldest to the psychiatrist, doling out the line of medicines to everyone in the mornings, or taking kids to urgent care when the unexpected happens. He lets me sleep in some Saturdays, even though he is exhausted, too. He helps motivate our toddler with feeding issues to eat, while silently suffering with a swallowing disorder of his own. He does all of this and doesn't talk about it much or expect anyone to sing his praises.

Following in these footsteps is our six year old, positioned in-between two special needs siblings. Somehow, in the blur of our days, he learned to read, write and make sandwiches. He quietly gathers homework items for my oldest, who is unorganized and easily overwhelmed. He hands me wipes and blankets when my youngest refluxes or cries. He opens doors when I am pushing a stroller. He even offers to carry the diaper bag. He wordlessly folds a basket of laundry when I am so tired all I can do is stare at the walls. He has learned by example that creating order in simple things makes the huge issues of life feel lighter. He appreciates someone noticing his skills, but doesn't demand that you do.

I am immensely proud of these two guys for the way they help balance our intricate family life. I literally could not do it without them, and I hope they know how much they are loved.

Autism... Not Just for April!

April is Autsim Awareness Month, and we are already hearing stirrings about various events and reasons to support the cause. It is my feeling that autism is widely known about but not well understood by the general public. It is one thing to donate a dollar to Autism Speaks at the Toys R Us check out or display a puzzle piece sticker on your vehicle. But how can you truly raise awareness either in yourself or for others? And how can you make it reach beyond one special month of recognition?

I think it starts by erasing what you think you know. Many people feel bold enough to insist what autism is or isn't, even if they have no experience with it themselves. Autism is a spectrum disorder, meaning that there are kids at mild and severe levels plus everywhere in-between. Autism does not look the same in any two people. It is unlikely but possible to spend time with someone with autism and not see any "autism red flags," on a good day. In that, one of the hardest things for parents of the higher-functioning kids is hearing, "Well, at least it is mild!" Yes, we count our blessings, and yet this is like saying someone's tumor is "a little bit cancerous." When autism affects your household, on any level, the emotions at hand are fairly universal. I do not believe that parents with mildly affected children process the diagnosis differently, and in fact, the isolation level may be higher due to a lack of sympathy from others.

Even if you do not have a child with autism, you might know one. Your student, nephew, neighbor or friend's child might have autism. If nothing else, your own kids will one day study and work next to someone who is on the spectrum. With 1 in 88 affected, it is inevitable.

Reacting with compassion to individuals with autism makes a better world for all of us. In practicing kindness, we are reminded that we all are different in our own ways and simply want to fit in. The same goes for how we react to the parents of children on the spectrum. If you see a child acting out in public, please do not assume the parent has no control. In fact, he or she may be ready to cry with exhaustion after trying every standard trick in the book. Parents of autistic children spend many hours reading about autism, working on behaviors, and driving to and from costly therapy or doctor's appointments. They have had to fight hard at schools to get their child what he or she needs in the classroom. They sometimes have to make heartbreaking decisions about medications. They feel guilty about not spending enough time with their typically developing children. They often do not have time for socialization the way other parents do. They question their own strength every day. There are many lonely times.

In April and beyond, consider what you can do to help. You might be surprised how small but well-thought-out gestures can have lasting effects. It doesn't have to cost any money. In fact, some of the best gifts I have gotten were a smile or a nice compliment. If you have it in you to do more than that, consider telling your friends what you have learned about autism, or even blogging about it. Bring a meal to a family in crisis or offer to babysit for them so they can have a much-needed night out. Volunteer for a local autism organization. I think everyone benefits when kindness is at work, not just those on the receiving end.

Milestones... Hit and Missed

All of us like to set goals and deadlines for ourselves... ("I will lose 10 pounds by next month... I will paint the bedroom before Christmas... I will get my in-box emptied by Friday").

We set deadlines for our children's milestones as well. You often hear someone state that their child has to be potty trained before the new baby arrives or that the pacifier must be a thing of the past by the time the child reaches a certain age.

I have definitely had my share of these moments as a parent, being convinced that a certain skill must be achieved by a specific date or that a habit needed to be broken by a particular age.

I was especially textbook-following with my first child. I did everything when I was told (Bottles gone by 12 months... check! Crib gone by age two... check!) When he failed to walk at 11 or 12 months like his little buddies in our playgroup, I went into panic-mode. He didn't fully walk until 14 months, which was so late in my mind, yet in retrospect was perfectly within the normal range.

I relaxed more with my second child, who happened to hit milestones early yet hold on to comfort items (like his beloved pacifiers) much longer than I would have allowed my first child to do. I started to learn it was ok to stretch the limits of normal.

This was good practice for having baby number three, for whom everything has been slow. He sat at eight months, not six. He walked at 17 months, not 12. Still, I got stuck on a few of those self-imposed mothering deadlines, anyhow. I thought he needed to learn to run by the time he turned two, and he did, somewhat, though it never looked quite like a normal run, and it still doesn't. He chooses not to move fast very often, and some days even a slow walk is a struggle. Knowing his stroller will be outgrown at some point and he will need assistance for longer outings, I looked up "child wheelchair" the other day, and then decided that was the saddest thing I have ever Googled, but the fact that I was able to type the words and consider some options for the future was a good sign of acceptance.

I remember finding it odd when Joshua had to remain on formula past his second birthday. At the time, I prayed he would be done with it by age three. Now with his third birthday less than a month away, I realized that I actually no longer view a specific end in sight for this nutritional support he receives. Somehow in the blur of day to day life, I have let this former deadline go. I am no longer thinking of how he "must" learn to eat better by a certain age, and I am not worrying what anyone else thinks when we are out and they see me pouring formula into a sippy cup with a soft spot (which actually looks quite a bit like a bottle). Instead of viewing the formula as a negative, I have started to view it as a positive, allergen-free, high calorie lifeline for Joshua. It is a part of him and it may be for many years.

The silver-lining to having a child who needs to take his time with things is not only that I have gained patience, but that we have a baby for a little longer than most. It is hard to complain about still needing a crib, stroller, diapers, pacifiers, blankies, baby foods or formula, because truthfully, this is a beautiful stage of life that typically passes too quickly.

But Who Am I?

It has come to my attention that even when someone directly asks me about myself, I still end up talking about my kids instead. It is true, they are a huge part of my identity. There are aspects of my personality and outlook on life that are different now than they were before becoming a mother to these three unique individuals. Despite this, I know that there are also things that are intrinsically me, and that haven't changed over time. I am going to challenge myself now to describe the person I am without mentioning my kids or my role as their mother. I know this will be difficult!

I was born in Illinois and I was a concerned and quiet child, preferring to be alone, but developing some wonderful friendships as well. I was cautious, not the least bit athletic, and I collected dolls. I read constantly. A trip to the library was my favorite outing.

I became slightly outgoing in high school to an extent, but more so in college. Leaving home to attend school out of state was one of the best things I ever did.

Colorado continues to have a special place in my heart, but I adore the desert of Arizona. I like the summer monsoon storms, the smell of creosote after it rains, the brown mountains and the impossibly blue skies.

Writing has always been a part of me. I wrote my first short stories at the age of three and later developed a liking for poetry and newspaper articles. I have also written about things that are true and painful to me. In every way, words provide me a healing that nothing else can.

Music is something else I can't live without. I am able to love a song for its melody, but it is the lyrics that really stand out. If I can relate to the words, I will listen over and over again. I find comfort in this the same way I do in writing.

I care deeply about my friends and family, and I fear I do not convey this to them enough. When I hurt someone I love, I torture myself over my mistake for weeks before I can let it go. I am not sure if this is a character flaw or an asset, this level of concern.

I am generally serious and like to plan things out but I can have unexpected spontaneous moments, too. The older I get, the better I am at being unafraid to say what is on my mind or do what feels right in the moment without over-thinking the consequences.

My happiness is not a constant emotion, but rather a feeling that builds from little positive experiences. More and more, I realize these fleeting, blissful minutes in time are the things I will actually remember years later, not the stress and agony.

There are a few experiences that can always calm me and make me feel small again. They include looking at the stars, being near the ocean, spending time with someone who has known me for decades, and walking barefoot on the grass.

I love jeans and flip flops, but sometimes dresses are fun. I feel naked without a necklace on. I like my hair long and I don't see that changing anytime soon. I seem to view myself as about ten years younger than I actually am. I think this is a healthy form of denial.

I believe most bad days can be fixed by hearing, "I love you," eating french fries, watching a good movie, getting my toes painted or buying new lip gloss.

I like to give generously. I have the tendency to donate to a good cause or buy a worthy teacher a nice gift before I put gas in my own car.

In the past, aside from writing, I have worked in childcare and medical records, as well as a few other "odds and ends." I am not very career-oriented, but I do set my goals high just the same. In the future I would like to do more with my interest and experiences in the special needs community, whether that be through more writing or another form of support.

Now I am feeling a little uncomfortable dwelling so much on myself. Want to hear about my kids?!

Excuses, 2010 Edition

"Excuses, 2010 Edition" is the short title for this blog. If I had enough room in the little box, this would actually be called, "Why I never catch up on laundry, return a friend's phone call, answer an e-mail in a timely manner, attend a PTA meeting or remember what my name even is."

If I may pat myself on the back for a second, I think I do quite well managing to organize the insane mess I have been handed, but I know it is still not good enough. I am aware that it is frowned upon that I haven't been more present at school events, that I sometimes forget special occasions and that I probably unintentionally hurt feelings when I have to cancel plans.

The thing is, while I may look like a slacker to the unknowing public, I have, in fact, been quite busy. It may sound selfish, but my kids come first. Period. They come before that school event someone asked me to help with, they come before chores and cooking, and they even (as much as this pains me), come before my dear friends' needs.

So what have I been up to that drains so much of my time? I have been getting prescriptions, researching the drugs, and picking the medicines up from pharmacies. Some of the drugs can only be found at specialty places with limited hours. Sometimes we have problems with refills or side effects that warrant more phone calls and worry. On a daily basis, I measure and administer nine doses of various medications for my kids if they are healthy. If anyone has an infection on top of this, it adds complication.

I have been taking my toddler to various doctors of different specialties to make sure his needs are being met and to search for answers. Sometimes there are medical procedures involved, and there have also been some overnights at the hospital. Sometimes my older kids have medical issues that need addressing, too, and that can be really draining when everything happens at once.

I have been taking my two year old to pediatric therapies, and sitting in on the sessions, five times a week. This is an ongoing process with no end being mentioned. None of the appointments are overly close to my house, and it also takes time and effort to make sure the therapists are addressing all his needs. I have to stay on top of the goals, and struggle to even remember what they are all sometimes, as we have so many.

I have been reading. I do read for fun, but I also read about autism, about allergies, about ataxia, speech delay, reflux, special education. and anything else that pertains to what we are currently going through.

I have been attending lectures and workshops. I go to as many free events that apply to us as I can. I think knowledge is key when it comes to empowering myself.

I have been teaching my two and a half year old to eat. I have been on the phone with his gastro doctor's nurse weekly. I have fretted about muscle tone, aspiration, calories, weight gain and his well-being. I have, with the help of my husband, weeded through the intricacies of insurances to obtain special formula, foods and liquid thickeners. Every outing requires a lot of planning, which is something normally reserved for parents of infants. I can't leave the house without sippy cups of the appropriate beverages as well as easy to chew and allergen-free snacks. When Joshua eats, I have to watch him carefully to hope he does not choke, and then I have a moment of panic if he does. Sometimes he gags and throws up during meals. Sometimes it happens when we are out in public. Sometimes people stare and my heart breaks a little. There are days Joshua eats no food at all.

I have been taking my oldest to autism support groups and playgroups as well as tracking his progress at school. I keep in close contact with his teachers, and I have to stay afloat on knowing his IEP goals. Sometimes there are meetings to attend, letters to write, or phone calls to make to assure that all is running smoothly. I have been focused on helping him to maintain a strong sense of self in a time when that challenges him. I have been talking him down from tantrums, helping him with homework that frustrates him greatly, and sometimes just rubbing his back and letting him cry wen it all becomes too much.

I have been attempting to be creative and active with my neuro-typical six year old, who needs mommy time in a desperate way. I have been giving him art projects, admiring his handwriting and driving him to soccer or karate.

You know what else I have been doing? I have been taking time to just "be" when I can, to appreciate, in rare, quiet moments, these beautiful children I have been given, or even to (gasp!) forget about mom issues and think about other stuff for a while. Some day I will be able to do more outside of my little bubble again. The rest of the world can wait while I focus on three little boys who can't.