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.

For What It Is Worth

I always enjoy reading books, articles or blogs with advice on how to handle different parenting situations. The best, of course, are those that come from someone on the front lines. I have been meaning to share my "worldly" advice on issues I deal with daily. Since our family has a few different medical or educational needs, I will just touch on two of them- food allergies and autism.

My first advice on dealing with food allergy in children is to downplay it when you can. Yes, if the child is severely allergic, they must be made aware, of course, and the school and everyone that comes in contact with the child needs to know the safe foods, or what to do if the child does have a reaction to something. But, the food allergy should not define the child, or make him feel strikingly different from his peers. Almost everyone has some sort of food allergy, sensitivity, or simply foods they do not care for. It has helped me a lot to point this out to my kids. The less limiting you make their allergy sound, the less limited they feel. Try to go to restaurants that list allergens online or have a helpful staff. Instead of looking at a menu and immediately telling your child what he or she cannot have, instead list what IS allowed. Sometimes, that list will actually be quite long. All of this being said, it is hard to constantly see certain foods (peanut, soy, or whatever your child's allergen is), as a form of poison. It is frustrating to always have to pack snacks for play dates,school or birthday parties. There are times I do find myself daydreaming about taking all three of my kids for a relaxing afternoon of pizza and ice cream. But, they have managed to branch out quite a bit, obtaining a taste for veggie sushi, hummus and salmon. My oldest children have become quite responsible about knowing what they can or cannot eat, or asking the right questions if they are unsure. My two year old will follow in those footsteps; I have no doubt!

The "biggie" on many parents' "what do I do now" moments is that time your child is diagnosed with some form of autism. Oh, how I truly want to hug everyone in that position right now and whisper, "it will be ok," even though I understand how hard that is to hear at first. The best advice I can give on raising a child with autism is this: Make memories with your kid. It is easier said than done. You have to mentally set aside time in which your brain will not be comparing him or her to peers, worrying what others think, or dwelling on milestones. You must find a way to be in the moment so that someday when you look back on this, you remember blowing bubbles, warm days at the park or family game night rather than a sea of appointments and uncertainty. Of course, as with any child, you need to accept your autistic child for who they are, and help them to do the same. I can say there will be moments to make you so proud you will cry with joy, just as there will be moments that will bring you to your knees in despair. Remember that you are not alone. There are billions of other parents sharing some form of your experiences with this disorder.

Every parents is a seasoned veteran in many areas. Food allergies and autism are just two of the issues that touch my heart, and that I like to try and help others with if they need or want the support. I definitely don't claim to be an expert in anything, but sometimes hearing one voice say, "I understand" is invaluable.

Giving Thanks

I noticed a lot of blogs on the theme of thankfulness right before Thanksgiving. I had planned to write my own, but I fell behind due to being sick. I figured that it is appropriate to be thankful any time of year at all, and so I will describe today the things I appreciate most in life.

I am thankful for the things that don't come easily. This may sound strange, but it is an interesting twist to take aspects of your life that you wish you could change, and find a silver lining to them. When I struggle with something, it makes me more sympathetic to people who also have similar issues, and I enjoy being able to understand how others may feel. One example for me right now are the migraines I suddenly have started getting. This has made me appreciate the days I do feel good, and it has made me obtain admiration for people who deal with chronic pain. I may not have understood before how hard it is to get through the day when feeling truly miserable. I might have taken my health for granted.

Along those lines, I am thankful for the weight I need to loose. Everyone has a cross to bear; something physical they want to change about themselves. This is mine. It keeps me humble and it gives me something to work towards. It would be nice to say the weight "just fell off" after having three kids, but numerous circumstances have kept this from being so. I am fully aware that success someday in this department will be more meaningful because it is taking so much time, and it isn't easy.

I am thankful for two parents who have always loved me unconditionally and encouraged me to live life my way. They never pushed me to be someone I am not, and they continue to support me in everything. I believe I was at an advantage in life starting out with such a positive upbringing.

I am grateful for the friends who have seen me through thick and thin. There is nothing more comforting than someone telling you that they remember where you have been, but that they can also see also where you are going. I have a lot of friends who constantly uplift me. Some of them are old friends from school, and some are newer friends who came to me through shared circumstances such as our children's activities or schools. All of them enrich my life.

I am thankful for my husband, an unsung hero who must see every side of me unfiltered, every day. I am happy for the strength he has to take over duties that seem to hard to me when I am overwhelmed, while he also works hard outside the home to provide for us.

Of course I am thankful for my children. I couldn't ask for anything more, and I celebrate their unique qualities, even when they can, at times, be frustrating. I am proud of the people they are becoming. Within that, I am thankful for the struggles we have had with things I never thought would be daily words for us... autism spectrum, cerebral palsy, developmental delays, food allergies, failure to thrive. A beautiful life comes out of raising children with special needs. I may have days of feeling sorry for ourselves, or for them, but I truly cannot imagine things being any differently, either.

I am thankful for my first "real" boyfriend, for teaching me about forgiveness and that love can endure over time, not in the way it started, or the way you might imagine it to be, but in a nice blending of shared memories and respect. I don't know that many people get to be in the unique situation to experience this.

I have great gratitude for our doctors, some of whom have gone beyond their call of duty for myself or my children. We are fortunate to have doctors who are willing to share their vast knowledge with us, while also being humble enough, when appropriate, to admit they do not have all the answers, either.

In relation to that, I am thankful for the pediatric therapists who have provided two of my kids with endless hours of help. I am most impressed with the ones who never say "He can't" or "He won't." That is what I need as a parent, to hear that the sky is the limit.

I am thankful for small things that make life fun, like lattes, a really good Mexican restaurant, a great laugh with a friend, an addictive television show, new shoes, or a pair of jeans that fit just right.

It would be impossible to list all the things I am thankful for, but these are some highlights. I think it would be beneficial to keep a running list in my head all year. On any given day, even on a horrible day, I bet I can think of at least five things to still be thankful for. It's hard to complain when there is still so much good all around, isn't it?

Deep Thoughts During Our Playground Adventure

Yesterday evening the boys, Bryan and I all went to the park for Zachary's soccer practice. While Bryan watched Zachary run around with his team in the grass, I took the other boys over to the playground area.

Not too long after we explored some of the slides, Joshua decided he wanted to swing. As we approached the swing set, I noticed a teenage girl on one of the swings. Her mom was on a bench right behind us.

It was apparent to me that the girl had something "wrong" with her neurologically, although I could not place what it was specifically, nor was that important. As I loaded Joshua into one of the baby swings, I noticed how peaceful the girl looked as she gazed into the distance, probably admiring something simple like the way the breeze was blowing the leaves; something many of us are generally too busy to bother enjoying. She knew how to pump her legs, but after a while her mother came over to push her, too. She looked so happy then, with a wide grin on her face. I tried not to stare, fearing her mother would assume I was judging, when in fact, I was admiring how profoundly beautiful the girl was... How beautiful they both were, this mother-daughter team.

Based on my kids' mild needs, I know that these moments to just relax in time are probably few and far between. The days are probably riddled with worry, work, therapies, doctors and meetings at school. I know that there was a time that this mom was told by a medical professional that something was wrong with her daughter. I know that if I had asked her, she would have been able to tell me exactly where she was when she heard that news, and every detail of that day. I like to think that maybe things have turned out better than she originally thought... that even though her daughter is challenged, and appeared to even be non-verbal, there are still so many moments of joy and wonder and limitless love.

As I pulled Joshua from the swing, I realized that perhaps, to this mother's trained eye, she may be able to tell that something is different in my child, too. If she looked closely, she may have seen a similar "wise old owl" look on his face, or she may have noticed how his hands were clenched when he walked, or that he has an awkward gait. Likewise, she could have looked across the playground to Ben and seen him spinning and spinning on a little seat with no regard to anyone around him, and wondered. But, maybe they just looked like typical kids to her, too.

I think what I gained is another reminder that we all are different in our own ways, and that life with special needs may have difficult lows, but that far too often the silver linings are missed. There isn't a requirement to go at the same pace as everyone else, and there isn't a need to muse about what might have been. Sometimes you can swing at the park at sunset with a smile on your face, rejoice in the fact that that is enough.

The Late Letter

Dear Grandpa,

I wanted to see you before you passed away. At the very least, I wanted to write you a letter. Many times I had crafted this correspondence in my head, imagining the words I would put to paper; the things I never told you. Of course every day there was a new distraction from the kids, and nighttime meant driving to activities, going to the gym, or collapsing into a heap of exhaustion on the couch. I know you understand, but it doesn't make my heart ache any less.

I wanted to tell you that I have always admired you for coming from humble beginnings and finding your fame. More important than that, you did work that made you happy. Sometimes the hours and intensity required to be great in your field meant that you lacked time for your family. I know that must have hurt more than you ever let on. No one can do it all, but you wanted to try.

Things slowed down a little bit by the time I came around. I think as your grandchild, I was in a unique position to see those carefree moments that others missed. You were able to give enough pause in-between commitments to truly enjoy our time together.

It might surprise you that I can recall with vivid detail from our last visit the musical sound of your laughter and the smile of joy you had on your face while holding your great-grandchild in your arms.

One of my favorite childhood memories is of a trip to the zoo in California when I was maybe about 6 or 7 years old. There was a cute baby monkey there that was wearing a diaper. I was absolutely in love with this little guy, and you were so amused by the story that you went out and found me a stuffed monkey, then hunted down a cloth diaper for it, too. Just for fun, the monkey was also given a hat and mittens. You were elated to present me with this gift, and I still have "Safari," who sits proudly on a shelf in my house.

To echo Grandma, who repeatedly stated during your funeral that, "it all went so fast," well... it did. Somehow in the depths of denial, I thought your life would go on forever. I thought there would always be another dinner out together, another chance to share stories, and another chocolate cake for birthdays.

I know memories are supposed to comfort me. While I do hold these recollections close, I noticed that there is a little light gone from my eyes. There is an empty space in my heart. No one can bring back that same exact sparkle or fill the spot where you were, because you were truly one of a kind.

I am thankful for the privilege of being your granddaughter. I love you like a poem in my heart that I have known the words to all my life. I will do my best to be a good person, to work hard and to inspire others. These are the ways in which I hope I can honor your legacy, but you are a tough act to follow. Your charisma was a gift, and one that is impossible to duplicate. Your greatness will never be forgotten.

Love Always,
Debbie