Focusing on Ability

I have written before about the ways in which Joshua, due to health issues and developmental delays, is still babyish, and how at times this is a blessing in disguise. I still feel this way. The sentimental mommy in me is never in a hurry for him to grow up. But I realize that there are undertones of negativity to this, too, as it focuses on what he CAN'T do. For example, right now, at age 3 1/2, he is still not potty trained, still walks awkwardly, still drinks formula as his main nutrition and rarely sleeps through the night. I do spend a considerable amount of time thinking about these concerns, writing about them, or discussing them with close friends.

About a week ago, we needed things at two different stores within a shopping center, and I decided we would walk between stores rather than re-parking. Given that Joshua has had a bit more energy lately due to a new med (hooray!), I didn't even bring the stroller. Joshua's brothers were with us also, one of whom is pretty much never in slow motion. In an attempt to keep up, Joshua was walking pretty fast, with his feet turning inward and his left hand raised slightly more than what is normal for the age, with his right arm flailing. I found myself watching him a little sadly and thinking, "He lacks the ability to walk normally." Then, I stopped myself and re-worded this internal observation to simply this: "He has the ability to walk." He can walk! Seriously, what a miracle, given the early days where we never thought he would! It certainly put things in perspective for me. Since then, I have used this as a mantra on days where he seemed really behind with his motor skills or when I made the mistake of comparing him to his peers. I would think, "He has the ability to walk," and then suddenly nothing else mattered much.

This lead me to think... what if I looked at all of his struggles this way? Then, "He lacks the ability to eat properly and is still on formula" could become: "He has the ability to drink formula." See what happens when you take out the negative details? This could even work for other things in my life, and not just pertaining to special needs or to Joshua. I see it as a way to slow down and calm myself when thinking about my many responsibilities or when the future seems to be way too much to process. One example I can think of is how I always criticize myself for what I can't get done rather than what I can. This can be overwhelming. So, instead of thinking, "I lack the ability to keep the house clean and organized," how about: "I have the ability to clean or organize small things one at a time when the schedule allows." Or, for that matter, how about, "I am grateful to have the ability to get out of bed in the morning and accomplish all that I can."

There really is a lot of power in positive affirmations. Words, whether spoken out loud or thought in my mind, have always held a lot of power for me. It is therefore crucial to me that I remain aware how truly lucky we are, and that I am as positive as I can be with my vocabulary. Try choosing your words more carefully. What do you have the ability to do? What do your kids have the ability to do? Maybe the inabilities will fade while the good stuff moves to the forefront where it belongs.

Letter to a Younger Me

Dear Debbie at age 16,

I know life seems hard now. You worry a lot about what everyone else thinks. There are events that seem monumental currently, but that won't matter in the big picture. It is difficult, at your age, to understand this. There is so much coming down the line that will be challenging, so you should have fun now while you can. By the same token, in ways, the wisdom of age will make you a happier person. Years from now, this will all make sense.

Let me share with you a few things I have learned:

Beauty is not all about being young and skinny with great hair and perfect clothes.
I regret that it took me so long to realize this, but it is true. It's the reason that mom I know from the pre-school who is bald from chemotherapy has never looked more gorgeous. It's the reason my 93 year old grandmother radiates with beauty when she smiles. It's the reason that, much to my surprise, I feel most attractive not when thin and made up, but with weight to loose, a baby on my hip, and his sleepy head on my shoulder. Beauty comes in many forms and does not have to be found in a conventional way.

Heartbreak doesn't last forever.
I know it feels like it will. But the world is big, and the relationships you form now are just the beginning of a life of connecting with others. If someone is cruel to you, run and don't look back. You are so much better than that. By the same token, if someone does treat you right, don't assume that will come again easily. True love is rare. If it matters, it will endure, and you should embrace that. Also, don't overlook people. Sometimes the ones you take for granted now are the ones who care the most, and who will do anything for you, even decades later.

Struggles make you stronger.
This is something your parents or teachers will say often, and that you will roll your eyes at. It turns out it is good advice. Not only does adversity make you stronger, but it also makes you a more interesting person. It sets the stage for challenges that will come down the road, because life definitely is not easy. You can choose now how to view things, whether to see them as road blocks or blips on the radar. Try to do the latter. Also realize that out of those situations that are the most difficult can come your finest hours. It's this ability to get beyond a D on a test, being picked last for the team every time, or having a fight with your best friend that will empower you to, years later, be able to pick up the pieces. There are things that will happen to the adult you that you can't begin to imagine now. You will need to learn to advocate for yourself so that you can fight for your children. They will need your positive but firm voice to help them get what they need at school, in doctor's offices, and in life. You will be their biggest fan, but not if you can't believe in yourself first.

Maybe part of the joy in our lives is not knowing what lies ahead, but I also think glimpsing the future can make you slow down and realize what truly matters. You will have so many good moments to outweigh the bad, you will laugh more than you cry, and you will be loved.

Sincerely,
Debbie at age 36

On Thinking You Know...When You Really Don't

One of the downfalls of sharing so much online is that it occasionally opens one up for criticism. I have had a little of that here and there, and it has never been anything too dramatic. Something happened the other night, however, that shocked myself and many who saw it unravel. I don't like to continue negativity, but in as positive of a light as I can spin it, I need to talk about this. It isn't just for me. It is for the other parents who also share online through blogs, Facebook content or Twitter. I have enjoyed reading their ups and downs, their daily anecdotes as well as their struggles. We need to continue to tell our stories, because they matter. I plan to do so. I will not let one cruel person make me question what I share.

In the midst of an ER run with my youngest the other night, (because he had a very high fever), I went on Twitter via my phone to pass some time in the waiting room. I asked if anyone was still awake, because, hey, the ER in the middle of the night is a little lonely. One of the first people to respond was someone I share mutual friends with, but do not know well. She has caused waves with others in the past, but I, because I am a nice person, continued to follow her online and allow her to follow me, too. It started out with her asking if I needed anything. Sounds nice enough, right? Then it very quickly proceeded to her accusing me of lying about not being able to attend a pot luck she was having over the weekend. After that she started making cryptic comments about how she hoped my child would get better and for me to read into that however I wanted. It really made no sense. Then right after that, which I unfortunately did not catch until the next day, she "happened" to post a link about a mental illness in which a parent somehow finds the time to fake illnesses in their child, make them appear sick and "hospital hop" seeking attention. This was followed by the hashtag: #justsayin.

This person has met me only twice in real life and has NEVER met my child. If she would have taken the time to learn the whole story, rather than just the window crack she could see on Twitter, she would know this:

Joshua has developmental delays as well as some health (mostly gastro-intestinal) concerns. I have spent a lot of time in my writings saying how fortunate we are, and that our problems are nothing compared to so many. I don't seek sympathy, but I enjoy sharing what I do know and reading about others who have similar concerns with their own kids. When someone tells me that a blog entry, or even a tweet, was something they could relate to, it makes me feel good. Our doctors have had a hard time getting Joshua to fit any one clinical picture, which is not unusual. It may make unkind and closed-minded people, such as the woman mentioned above, assume there is "nothing there" then, but that is not so. For lack of knowing what else to call it, for now, our doctors use "mild cerebral palsy," while also being quick to tell me they know it is more than that. Again, this is not unusual. There are so many neurological, genetic and metabolic conditions that it is like throwing darts in the dark sometimes. Some children never receive a conclusive diagnosis.

As for the hospital trips, maybe this person could have taken the time to ask about our schedule. We go to the children's hospital here once or twice a week just for simple pediatric therapies such as OT. Also, all of Joshua's doctors work out of that hospital, so whether we have a check up with a specialist or just a run of the mill cold to look into, that is where we go. Our ER visits are likely an average amount. I go if there is an alarmingly high fever, vomiting that will not stop, or an injury, as any good parent would. So yes, you may see a "check in" to the hospital more than what seems average, but it is not always for something major. It is definitely not for something I have made up for "fun" (in all that spare time I have, you know!)

Maybe this person has seen me say that we are going to California and Wisconsin for medical care soon. I happen to know many parents who have traveled out of state to seek medical care for their children. It isn't that abnormal. If this woman would have taken time to ask, I would have explained this: We were told to seek a second neurological opinion on Joshua. The question of metabolic/mitochondrial disease has also been considered, and so I was fortunate to find a doctor somewhat close to us in California who specializes in all of these areas. We are going to Wisconsin because our gastro-intestinal doctor said it is the next step. In fact, he wanted us to go to programs back east that lasted two months! I was happy to find a shorter plan in Wisconsin. Joshua has already been through feeding therapy at the hospital here, and it didn't increase his volume of how much he ate. He has flat-lined on growth. (Miraculously, he is not losing yet!) He will not be able to sustain long term on the amount he is eating. We don't know enough about his gastroparesis to know what his stomach really can handle in one sitting. He may have hit a ceiling as far as his eating ability. Our doctor feels that it is vital to get more information and maybe do some intensive feeding therapy, seek alternative ideas and gain knowledge for what the future holds. It may still result in a feeding tube being placed. I asked about twenty times over the course of several months if we really needed to travel for this, and each time the doctor or his nurse reminded me of the reasons that we do. I hate to fly and be away from my other two kids. This is not something I want to do. It is something it turns out I HAVE to do for my baby. Who wouldn't?

I choose love and explanation over hate and yelling. But I still had to speak out about this because the woman behind the ridiculous assumptions was so wrong, and because I am sure there are other parents who have been in this situation before. I will continue to share our journey. I will be open about my bad days as well as the good. I will do everything I can to help my child until his doctors and myself are at peace with knowing we have turned over every rock within reason. It is not crazy. It is responsible, logical parenting.

Precious Time

Given the experience I have had with special needs and the time I have had to get used to the idea, I have been pondering why I still feel such a roller coaster of emotions over it constantly. Sure, autism is tough to manage, but I have been down this road before. And yes, boy number three has more physical movement struggles than I have dealt with before, but there is something else. I thought about this all week and then it hit me: I have a chronically ill child. Yes, autism is chronic, but what I mean is: my third born feels physically sick more often than not. I am talking about the extra diagnoses that make him medically fragile.

Some of the things we deal with are reflux, gastroparesis, food allergies and fatigue. On a daily basis, he may feel too full after just a few bites of food, might have a burning throat or upset stomach, or be overly tired while his peers run circles around him. It is heartbreaking as a parent to see your child in pain so often. Our medicine cabinet is much fuller than I would like. We have tried many medicines to control the symptoms as well as added some vitamins to the mix. His formula is a special kind that requires a prescription as well.

And then there is the great unknown, and the fact that his collection of symptoms suggests a larger, all-encompassing diagnosis that has so far alluded doctors. The immature gait, the unexplained fevers, the slow stomach, the lack of energy, it all adds up to something, they say. "Something"- and yet no one knows what.

At certain times I have expressed my desire to appreciate every day, but I doubt I have ever written with brutal honesty this simple fact: I do not know how long my child will live. Yes, his ailments may turn out to be pesky things that will improve some with time, and he may learn to adapt and live a full life. Without a clear diagnosis, we live in doubt and sometimes fear. I do realize we are not alone in this, and that many other parents, TOO many other parents, share this experience. And yet somehow it has been hard for me to identify my feelings about it or want to share.

This is why I drop everything and lay down with J.C. when he wants to cuddle. This is why I sneak into his room to look at him sleeping at night, or why I sometimes am secretly excited if he wakes up. This is why I do enjoy my breaks but miss him after a few hours away. He calls to me... time calls to me... more precious when it might be too short.

For the Love Of Twitter

Several months ago, at the urging of a friend and also driven by a willingness to help my favorite local non-profit, I joined Twitter. I thought at first that I would just get my feet wet, learn the ropes, and share pediatric feeding or autism tips occasionally.

I certainly did not expect to quickly connect with many other people who not only wanted to exchange information but be my friend. Taking that one step further, it was not long before a group of us decided to meet in real life, and we continue to support each other via tweets, whether it is someone needing advice or simply making each other laugh. Did we get along just as well in person as online? Yes.

Something invaluable to me has been connecting with other people within the autism community. There is simply no better forum for fast, appropriate exchanges of all kinds of information on the spectrum. It is also so nice to tweet out a "having a rough day with kids and autism" kind of thing and have a warm response of, "I know how you feel" and "Hang in there!" I feel like I get similar support on Facebook, yes, but there is not that "sharing with the world" feeling by any means. There is something liberating about saying what you know or feel and knowing it is "out there" for anyone to read. I have connected with so many bright, positive and productive parents of children with autism this way. And, as a mom of two kids on the spectrum and with other medical issues at play, some days, sadly, Twitter is the only adult interaction I get.

Some critics of Twitter will say, "Yes, but do I really need to know that you ate a sandwich for lunch?" To this I say, no, most people on Twitter are not sharing mundane tidbits like that, but if they do, then yes, it matters. That is part of the point. The every day things, the meal you enjoyed, that movie you just saw, or the song you are currently listening to are part of what makes you unique. If you balance that with good information, positive interactions and support of others, then followers will value hearing about the little things you love, too.

I can't fathom that my interest in these connections I have made will diminish at all. In fact, I think that with each day that passes, with each new diagnosis (or heartbreak over the lack there of) with the kids, I will crave this mix of fun and intelligent exchanges even more. Don't have Twitter yet? Try it... with an open mind... and watch what happens. I predict only good things.

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.