Reality, Heat and Hope

I love the whole glass half-full concept in life, and I will try to keep up with that as much as I can. I am going to be honest, though, the past couple of weeks have been rough. We've had a change in routine due to school being out for summer, and the heat has been especially hard for Joshua. As much as I want to continue to sugar-coat things, or nod my head with a smile when someone says he is doing "great," I just can't right now. More and more, I see that what we are dealing with is simply NOT normal, and I won't pretend it is. What you see as a good moment can so quickly progress into fatigue and dehydration. Also, a glimpse into our home life would show you what we go through for a chance of him to be even at baseline. Before you see us for a morning playdate at your house, a therapy session or an outing at the movies, a lot of things have already happened. For one, I was likely up til the wee hours with a racing mind, researching, emailing, or (if I am lucky!) reading for fun, just to relax a bit. Joshua has likely crawled into our bed crying and fussing around 3:00 or 4:00 a.m. He may have had leg pains, and stomachache or needed a diaper change. He likely has already had two reflux meds, one supplement, 8 oz of his elemental formula, a motility med and an electrolyte-containing beverage with thickener. He probably has not, however, eaten breakfast, as he usually lacks interest or ability, despite our best efforts. So, the whole time we are out, I am worried about his nutrition and fluid intake as well as how his body is reacting to the heat. I am also observing how he is walking and how tired he seems, to determine if it is a wheelchair day. I am observing any swallowing he does to make sure he isn't aspirating. I am watching his cheeks for signs of redness, his eyes to see if they are swollen, and feeling his skin for cold sweats (hypoglycemia). I am sometimes scared we should not have even left the house, but I try to create as normal a life as I can for him and his two older brothers. I have to carry a huge bag full of stuff just to make an outing safe. I always come home exhausted. On a different note, I am observing listening skills, emotional regulation, speech patterns and socialization, none of which I can claim to be age-appropriate, so that is a whole other avenue to deal with. I realize all parents worry and many parents have so much more on their plates than this. I admire those parents more than I can express. Joshua has done well over time in SO many ways, and for that, we are lucky. I don't want sympathy or- so much worse- pity. I simply want understanding of what families like ours go through on a daily basis, and how that is also amplified by summer heat. Diseases such as Joshua's metabolic/mito dysfunction are similar to lupus or chronic fatigue syndrome in the sense that the patient can look fine in some moments, or even for days at a time. It's both a curse and a blessing to what we refer to as "invisible illnesses." In these cases, a lot of compassion and a desire to learn and spread awareness can go a long way! One of the best things someone said to me recently was, "I don't really understand, but I WANT to!" Thank you for that. I hope many others will follow in your footsteps, with an open mind and heart.

From The Darkness: On Seeking Help

Recently I have read quite a few blogs in which people have opened up about their struggles with feeling overwhelmed or depressed.

I think about this a lot, as I experience the same feelings sometimes. It's optimal to say we are happy, and to stay as positive as possible, but it is also ok to be sad! I am not a huge advocate of saying I am "fine" if I am not, or posting inspirational quotes when I feel like my world is actually caving in. Sometimes in attempting to look at the bright side, we can, in fact, make our mood better. Still, for the most part, if I am having a hard time, I am going to tell you. I don't really think it benefits anyone for me to be dishonest. If you know me well, you have seen that I feel profoundly hopeless and alone on a down day,and yet luckily this doesn't happen too often anymore. I feel genuinely happy more often than not.

One of the darkest hours I remember, though, was when I was at the end of my pregnancy with my third baby. We were already navigating a new autism diagnosis for my oldest child and a food allergy issue for my other son. The baby I was carrying was not moving much at all, and I was horribly sick with a cough that would not go away. My mothering instinct felt that this third baby had special needs, too (and I was right). When I look back on that period, I remember everything being black. That's how depressed I was. Literally, my images are in black and not color, when I reflect upon that time. I think I very much felt like I was standing on the edge of a dark cliff and that life wanted to push me past the edge.

Despite not feeling social at that time plus being busy, I somehow still became interested in a local high functioning autism support group I had heard about. I remember when I spoke to the woman who started the group, she was in awe of me wanting to get involved right before having another baby. In fact, the first meeting we attended was right after he was born. It was one of the best things I ever did, though. Five minutes in the door, and I knew I had found others who understood me. I didn't yet have a good online support system, and none of my current friends' children had special needs. I almost cried in relief to see other kids accepting my oldest son, not to mention that he enjoyed his time, too! I often look back on this and say that it saved my life. Autism is now our normal. I don't need this support group as desperately I once did, but we still go to the meetings and enjoy the sense of belonging. I have also gotten very involved with another organization that helps children with feeding issues. I will be reaching out to this community for a long time to come, utilizing continued positive connections and giving back of my time, too.

What would have happened if I hadn't pushed myself to seek help when I needed it? If you are having a hard time, I urge you to seek support in the area that concerns you most, or to simply pick up the phone and call a friend who will understand. In addition to that, I believe that we benefit no one when we consistently hide our true feelings. It's ok to tell Facebook that you're sad about something. No one likes "negativity," but we do like honesty. Through opening up, help can almost always be found. May your 2012 be filled with love and light.

My Current Top 3 Things That Work

I've been thinking about parenting, and special needs parenting in particular. So much of it is guess work. I am constantly asking myself if I am doing the right thing. There are many decisions I have struggled with. In the end I generally feel good about choices I have made, but at times I could have used assistance from other parents who had been through similar decisions before. Of course every child is different, so what I have so say now may or may not apply to your situation. However, on the off chance that this helps someone, I will write about a few of the best things I have done so far for my youngest child, now age 3. These are the choices that have helped make our daily living easier.

1. Getting a wheelchair.
I realize for some families this is a necessity and not even a choice. According to our orthopedic doctor, we HAD to get one, too, and yet technically Joshua falls into a gray area. He does walk. Sometimes he can even run! But, his gait is clumsy and he tires very easily. We worked around this issue for years by using a baby stroller, of course. However, it started to become apparent that Joshua was not going to outgrow his issues, and that at times the walking even looks worse than it did before. On top of that, he is extremely tall for his age. His head was uncomfortably above the top of his regular stroller. I had the prescription for the wheelchair on my nightstand for quite some time before I could look at it without wanting to cry. Once I made the call to set up an appointment for measurements and choosing a seat, though, I felt more accepting. And when I saw how excited Joshua was, my heart was even happier. I started to see his wheelchair as freedom... for us both. This will enable us to take long walks or go on long family outings comfortably for years. It does resemble a stroller. It's a nice style. It's even "fire engine red" (per a certain 3 year old's request!) We don't use it every day, but I love knowing it is there. If you are on the fence about getting a wheelchair for a child who is mobile yet struggles, my advice is to go for it. I don't think you.ll regret it, ever.

2. Getting a handicapped tag for my car.
This is related to #1. We got our tag quite some time before the wheelchair, though. It came at the perfect moment, right before a trip to California in which, for still unknown reasons, Joshua lost his ability to walk for a few days. I still use it a lot. Like the wheelchair, I don't use it every day, but I love knowing it is there. I don't abuse it. Whenever possible, we try to park close yet save the actual handicapped spots for people who need them more. I do feel good about knowing we can park in handicapped when we need to maneuver the wheelchair, or when Joshua is sick or low energy. At times, he requests to walk, which I hate to deny, and the tag also comes in handy then. He simply cannot comfortably walk on his own from a far away spot. Being able to park in handicapped and then helping him successfully make it to the door helps his self-esteem, rather than him feeling like everything is too difficult for him movement-wise. If your child is mobile and doesn't always "look sick," be prepared for the potential for clueless, rude folks to question your use of the handicapped tag. This is a downfall, and yet it has only happened to us one time. I think the general public is getting a bit more educated that you cannot always SEE a disability clearly. Plus, when you know you are doing what is right for your child's needs, of course it should not matter what others think, anyhow. Handicapped tags or plates are there for those who need them. If your child falls into this category, even mildly, I suggest you get one.

3. Not obsessing about potty training.
This is tough as a parent. There is a lot of pressure from friends and relatives. Like with other delays, I have had to not think about the chronological age of Joshua too much and "what the other kids are doing." He's always gone at his own pace. I do have days where I panic about the time line a little. And, I have even wondered if his stomach issues and weak muscle tone could make full training an impossibility. I will cross that bridge when we come to it. For now, 99 percent of the time, I am able to gently suggest to Joshua that he could try to go potty, but let it go when he can't or won't. I change his diapers without complaining in front of him. He still drinks formula, eats baby food and sleeps in a crib. It therefore shouldn't be shocking that potty training is on the back burner. There are so many other things to work on! I think his little brain is going all the time. He's improved his speech and has become somewhat social at preschool! These are things to cheer about and focus on. I hope I am not still changing diapers when he is in kindergarten, but one day at a time will lead us to whatever outcome is meant to be. If your child is similar, try letting the potty thing go to some extent. Encourage, accept, don't pressure, and see if you both feel a lot more content with each other.

There are other decisions I feel good about, too, but right now these are my top 3. Of course I have my share of mistakes also. (See previous blogs for some of those confessions!) There are so many important things to figure out all the time while raising children. When kids have extra needs beyond the ordinary, life becomes even more confusing, but remembering to relax and ask for help go a long way towards making daily living easier.

This Is Why It Hurts...And Why It Will Get Better

Often there are things that happen during the day which are so draining, I don't feel like talking about them later. They are the ups and downs of everyday life, sometimes too mundane to rehash. Then there are the things that are so painful to me that I can't speak of them out loud, even if I wanted to. Sometimes, though not always, I can write about them instead. I know my last blog was all about looking on the bright side. I'm still in that mind-frame. But I am also a parent, and a sensitive one at that, and I had a tough day.

There is always a learning curve in mothering. At first you have to try and decipher the sounds of different cries, to change a diaper, to breastfeed or mix formula. Later, there is the discipline, potty training, or choosing a preschool. Second or third babies are easier in these regards, unless they have special needs, in which case you are learning all over again.

Such is the case with my third child. He isn't even the only special needs kiddo in our bunch, but of course every situation is unique. So far I have learned how to give him medicines, mix his supplements, clean vomit out of everything, order and feed his special formula, use an EPIpen, carefully read food labels, organize his therapy appointments, do exercises with him at home, keep track of his rotating needs with various specialists, coordinate habilitation and respite workers, advocate for him at school, count calories, order him a wheelchair, use a breathing machine, have him fitted for shoe inserts, smile when he has nights in which he wakes up as much as a newborn, bravely hold his hand as he goes for x-rays, MRIs or endoscopies, stay up late searching for answers on the internet, ignore depressing statistics, and countless other jobs I thought I could never handle. Meanwhile, while I don't do it perfectly by any means, I also have responsibilities with my other kids, my husband, my house, my parents, my volunteer commitments and my friends.

So, the other day when the endocrinologist said we needed to start checking blood sugar levels at home for hypoglycemia, I confidently thought, "Sure, no problem." Ok, I was a little nervous, because the nurse only gave me a very quick demo, but I still believed I could handle it. Unfortunately, I was mistaken. Not only did I not understand how to do the test well enough, but I also got emotional.

Today I picked Joshua up from preschool, and he felt cold and clammy, one of our signs that his blood sugar may be too low. I waited until we drove a couple minutes to the Target parking lot, because he was so worked up at school, and then I got out our blood sugar monitor and the supplies. Still confident despite his wails of protest, I didn't waste too much time bribing him with the promise of a blue icee and getting started. With trembling hands (a surprise to feel), I used the little lancet that came with our kit. It seemed I didn't get enough blood for the test to work. Determined, I got out another strip and lancet, adjusted the setting, and went for it again. This time I drew enough blood and I hurt him on top of it. I think the silent tear and look of disbelief on his face at that point was far worse than the earlier screaming. (In moments like this, I always think of that line from that old song, Mandolin Rain- "listen to my heart break..." - because surely mine is ready to rip in two). I apparently didn't have the strip in the monitor correctly that time, because I still didn't get a reading. At this point, I gave up, went in to Target for the treat, and we went on our way.

After an OT appointment, we returned home and this was all still weighing heavily on my mind. I knew if I could just learn this important job, my mind would be at ease. And so, before Joshua's nap, I somehow worked up the courage to try again. He was not a fan of this idea, of course. In fact, he was flailing, crying and screaming. (What a great time to be wielding a needle, right?) I finally had to get tough and have my husband hold him down while I did the test. This time we were back to the "not enough blood" problem, and I didn't have the heart to try it a fourth time. I ended the afternoon feeling like a failure.

I know that I will manage to learn this, the way I have learned everything else. I need to breathe and get the basics down, which will empower me, which will in turn calm my child. I know I am doing it for his own health and safety, but this is the first time I have had to hurt him. Regardless of the caring intentions behind it all, and the fact that I am following doctor's orders, it pains me greatly. I will eventually file this away under "things that seemed like a big deal at the time but aren't anymore." I can't say I will look back and laugh. I won't. But, it will get easier.

Tonight I will forgive myself for not being perfect. Tomorrow I will cover Joshua with kisses and hugs when he wakes up and we'll look forward to a new day together. I need him to know that I am not always good at things, but that I am not afraid to try again. I want him to understand that sometimes life does hurt, but that the great moments outweigh the hard ones. It's a tender age to learn such lessons, but I believe it is within his realm to understand. When he is older, I will be able to explain more to him, like how truly privileged I feel to be on this journey with him, to be his mother, and to have been entrusted with his care.

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.