Looking Back, Looking Forward

As I write this, it is December 30, 2016, 10:03 pm. The final day of the year, and the start of the new year, are just around the corner. Already my Facebook news feed is blowing up with posts from those reminiscing about 2016, as well as their hopes for 2017. I confess that I am looking ahead to 2017, feeling rather discouraged. It’s not that I’m being pessimistic, but more that this year I am looking ahead with realism more than optimism.

We started 2016 with the hope that this would be the year we would find out what was causing our daughter’s GI issues, and be able to treat it. While we do now have a better idea of what is wrong, we are still no closer to having it treated. In fact, things are worse now at the end of 2016, than they were in the beginning. Attempts at treating her condition through medicine have fully failed our daughter, and it looks to be about a 99.9% certainty that major surgery looms on the horizon for 2017.

It’s a bit discouraging to know that 2017 will more than likely not be any easier than 2016 – and 2016 was a rough year. We racked up over 10,000 km for various medical appointments (of which there were over 30), our daughter went through an in-depth therapy evaluation at an Autism Rehab center, 3 full general anesthetics, an MRI, a rectal biopsy and a dental surgery. She also had 6 or 7 x-rays,  a holter study, a motility test, and 4 UTIs. Doctors tried her on a total of 8 different bowel medications. She received a soft diagnosis of a genetic disorder (confirmation via geneticist pending) and started a new social skills program with a new OT. She ended the year with a medical team which includes a general practitioner, two pediatricians, a gastroenterologist, rheumatologist, general surgeon/urologist,  psychologist, dietician, occupational therapist and social worker.

Despite our initial hopes otherwise, she has ended the year fully incontinent and in Pull Ups full time. We have watched her heart break as other children tease her.  We have watched her tiny belly bloat until you would think it might pop. We have watched her curl up on the floor whimpering in pain. At other times we have watched her double over, crying, almost screaming in pain as medicinal-induced spasms rack her belly. We have had to watch her cry, and beg us to tell the doctor’s to perform surgery to fix her, so she doesn’t have to, “wear diapers any more, take any more medicine and so my belly will feel better.”  We have ultimately watched our initial hopes for 2016 be dashed, and we have been rendered to the point of feeling completely helpless.

Unfortunately, while we did receive a few answers in 2016, we were still left with more questions and many unknowns. Granted, we know there will be more pain, more invasive testing, more time in hospitals and as I already mentioned, likely a major surgery. What we don’t know however, is when will this all happen? What tests exactly? What type of surgery? Or will they try one of the newer, experimental treatments? What will the impact of the treatment be on her life? Our lives? Will she still be able to play soccer? Will she be able to go swimming?  How much of a social impact will treatment have on her? Will she end up with a colostomy bag that will lead to more teasing? Will she cooperate with the daily flushes that a cecostomy would bring? Will the treatment even work?

And so, with more uncertainty than certainty in our future, I will start our new year with calls to her doctors, administering medications, keeping stool diaries, changing diapers, and reading medical journals about sacral nerve stimluation therapy, as well as researching the four different surgical options that could be used to treat her condition.

With that out of the way, as I reflect back on the rest of the year, I have to say, despite how it may sound, 2016 was not all bad. Despite all the negativity, we had many, many wonderful moments and made some precious memories. Some things were bigger like the impromptu weekend get away we took to St. Andrews and New River Beach. Or our family trip to New Hampshire, where we rented a trailer in the White Mountains for a few days and enjoyed the local theme parks.

Then there were the numerous “smaller” moments: the simple, every day moments that to me are the most cherished. Moments like soccer practices and dance recitals, going as a family to get our Christmas tree, silly moments of dress up and impromptu singing and Christmas plays, trips to the local park and fishing in the stream, snowmobiling in the back yard and snowboarding at the local ski hill.

There evenings as a family cuddled on the couch watching a tv show together; there were bedtime stories and bedtime snuggles, there were afternoons spent baking together in the kitchen or playing outside on a sunny day. There were the backyard fires in the summer evenings where we roasted marshmallows and there were birthday parties,  Easter, Thanksgiving and Halloween. There was the lemonade stand in the spring, and picking blackberries in the summer. Days of going to the farm market for a sausage and maple candy.

And of course, there were the countless hours we spent homeschooling the children. While there were obviously “those” days (the ones where I wondered why on earth we ever decided to do this in the first place?!), the vast majority of our days homeschooling were fun and rewarding. Our avid-reader son seems to have finally conquered his hatred of math, and our math-fanatic daughter has become a blossoming early reader. We enjoyed field trips, projects and experiments, reading great literature and examining classical art and music.

More than once this year I have been so grateful that we were led by God to homeschool. I can not imagine having to deal with all our daughter is going through, if it were all compounded by dealing with the public school system at the same time – dealing with IEPs and ensuring she has the right support, having to make up for countless missed days and the teasing our daughter would undoubtedly endure.

Being home together as a family has allowed us to support our daughter, and each other, in  ways that  would not be possible otherwise. The children have an incredibly strong bond, and my son is developing an empathetic maturity well beyond his years. Instead of being left behind with various family members when we have to travel for appointments so he can attend school, we get to travel as a family. We try hard to make each hospital trip feel like a “mini-vacation” to the children, by staying in a hotel with a pool, an experience which thankfully my children are still young enough to think is second only to Disney World.

And so, this New Year’s, I won’t say that I hope 2017 is going to be a better year than 2016. I’m being realistic. But, what I do hope, is that 2017 is much the same as 2016 – a year that while filled with many moments of worry, pain and uncertainty,  will also be filled with even more moments of the simple, every day pleasures of life. For they are the moments that give life it’s beauty among the chaos.

I am Weak

Today I write this for another Mom I know, another Mom who carries the weight on her shoulders, the burden of raising a child with special needs, with serious health issues. For another Mom who has felt lost and broken, weary and hurt with dealing with the life that has been given to her. Today I write this for every mother who has ever felt like I have. We, our children, are all fighting different battles. It doesn’t matter which child is healthier or more high functioning. All that matters is that our children have struggled, they have fought. And we have stood by them, with our hearts physically aching, tears streaming, feeling every ounce of their pain, feeling alone in the world.

But we are never alone. Not only can we find solace in the fact that every second of every day there is another mother fighting for their child, for their illness or disability, we can take comfort in the fact that we are not walking through this journey alone – for God is with us every step of the way. He is our strength when we are weak.

Since our daughter was born, I cannot count the number of times that I have been commended on my strength, told by others, “I have no idea how you do it,” as though I possess a strength that others do not. But the truth is – I’m not strong. I am very, very weak. Going through what we have with our children have proven that to me.

The day before my daughter’s scheduled open heart surgery I was a physical and emotional wreck. As we prepared to leave for her pre-op day, I was physically sick in the bathroom. I was shaking and crying, “I can’t do this, God, I can’t.” How does a mother ever have the strength to hand their tiny child over for a surgery that could kill them? Or leave them with serious, life-long complications?

Since our daughter’s diagnosis with autism, how many times have I felt broken? How many times have I felt like giving up? Like running away and letting someone else deal with the screaming? The destructive behaviors? The constantness? For at the worst of our daughter’s behaviors, that’s how my life felt – like one constant mess and battle after another. I would no sooner get one mess cleaned up, then she would be destroying something else. I would no soon get her (and myself) calmed down from one melt down and she’d be having another.

I have never felt more longing and more jealousy. How often did I feel jealous of those around me with healthy children, with children without disabilities? Who didn’t have a list of phone numbers on their fridge that included almost a dozen different medical professionals and therapists? How often did I look at my daughter longing to hold her, to cuddle her like other parents do? How often I longed for that closeness.

I have never felt so tired, or so old. There have been days when I have felt weary of life, tired from the mental strain and worry. Tired of the constant appointments, of one issue after another popping up, and having to fight a system to get help for my daughter who despite her many health “quirks”, is healthy enough and “high-functioning” enough that she falls through the cracks. Tired of wondering what’s normal and what’s not.

I have never felt so lost or so burdened. My son’s diagnosis of Sensory Processing Disorder is not a familiar diagnosis in our small town, and there are very few resources available for help. There are few people that can relate to what we go through. I have felt the weight of the pressure on me like a physical force – the pressure of knowing that I am responsible for fighting to get him the help that would be readily available in other areas. I have felt lost wondering where to turn, what to do next, how to handle the behaviors at hand, what I could do to teach him the coping skills he needed, to be able to function like a “normal” child.

I have never felt more criticized and hurt – hurt by the lack of support I thought I would receive from some of the people closest to me. Who instead of reaching out to me, condemned, judged, questioned and accused me. Who criticized the decisions we were making, or the way we were handling our emotions, on a journey that they were not walking.

I have never felt more alone. I have never felt more weak.

But that’s the common misconception that special needs parents often face – that they are a special species of mothers with super human strength, capable of doing what others deem impossible. When the truth is – we are just ordinary, regular mothers, who have been given situations that were certainly not of our choosing, and we have no clue what we’re doing. We are not stronger than any other mother, in fact, on our own, we do not even come close to being strong enough to get through these challenges on our own.

Instead, the truth of our strength can be found in the Bible, Psalm 121:1-2:  “I lift my eyes unto the hills; where does my help come from? My help comes from the Lord, the maker of heaven and earth.”  We alone, are not strong enough. It is only through God’s strength and mercy that we are able to face the challenges that we are presented with.

I was raised as a Christian. I sang in the choir from the time I was 8 years old. I attended church faithfully for most of my life. But I have learned more about faith and trust in the Lord in the last 5 years, than I have in the rest of my life.  I have been brought to my knees in my life many times, and it is always when I am there, feeling broken, that I feel God’s presence the most.

It is when we have all but given up, when we cry out that we can’t do this any more, that we don’t want to do this anymore, that we’re tired, that we’re scared, angry, frustrated, afraid, worried, confused, discouraged and so on… It is then that God reaches down His hand, and pulls us back up. It is then that God reminds us that we don’t bear the burden alone, that we are not solely responsible.

And we aren’t. So often, we get caught up in our role as “special needs Mom”, and all that comes with it – the pressure, the to-do lists, that we forget that God is right there beside us every step of the way. And while yes, there is a role for us to play, there are responsibilities that we must take – ultimately, our children’s lives, their progress, their healing, is in God’s hands, not ours. What a huge relief and comfort to know that God is with us, always. To know that when we fail to be strong enough, God will be there. God will never, I repeat, never fail us. It’s a promise that gives me, that can give all of us, the strength to get through every challenge.

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For some of my favorite scriptures, songs and poems that I have turned to over the years, please read on:

Scriptures:

“May the God of hope fill you with all joy and peace as you trust in him, so that you may overflow with hope by the power of the Holy Spirit.” Romans 15:13

“He will have no fear of bad news; his heart is steadfast, trusting in the Lord.” Psalm 112:7

“Have you never heard? Have you never understood? The Lord is the everlasting God, the Creator of all the earth. He never grows weak, nor weary. No one can measure the depths of his understanding. He gives power to the weak, and strength to the powerless. Even youths will become weak and tired, and young men will fall in exhaustion. But those who trust in the Lord will find new strength. They will soar high on wings like eagles. They will run and not grow weary. They will walk and not faint.” Isaiah 40:28-31

“For the joy of the Lord is your strength.” Nehemiah 8:10

“Now faith is the substance of things hoped for, the evidence of things not seen.” Hebrews 11:1

“When you go through deep waters, I will be with you. When you go through rivers of difficulty, you will not drown. When you walk through the fires of oppression, you will not be burned up; the flames will not consume you.” Isaiah 43:2

“The power that made the body, can heal the body.” Psalm 139:14-16

“God is our refuge and strength, an ever-present help in trouble. Therefore we will not fear, though the earth give way and the mountains fall into the heart of the sea, though it’s waters roar and foam and the mountains quake with their surging.” Psalm 46:1-3

“We are pressed on every side by troubles, but we are not crushed. We are perplexed, but not driven to despair. We are hunted down, but never abandoned by God. We get knocked down, but we are not destroyed. Through suffering, our bodies continue to share in the death of Jesus, so that the life of Jesus may also be seen in our bodies.” 2 Corinthians 4:8-10

“Dear Brothers and Sisters, when troubles come your way, consider it an opportunity for great joy. For you know that when your faith is tested, your endurance has a chance to grow. So let it grow, for when your endurance is fully developed, you will be perfect and complete, needing nothing.” James 1:2-4

“Here on earth you will have many trials and sorrows but take heart, because I have overcome the world.” John 16:33

“Blessed is the one who perseveres under trial because, having stood the test, that person will receive the crown of life that the Lord has promised to those who love him.” James 1:12

Quotes:

“If God brought you to it, He will bring you through it.”

“Challenges are what make life interesting; overcoming them is what makes life worthwhile.”

“He giveth more grace when the burdens grow greater, He sendeth more strength when the labors increase; To added affliction He addeth his mercy, To multiplied trails, His multiplied peace.

His love has no limit, His grace has no measure; His power no boundary known unto men; For out of His infinite riches in Jesus, He giveth and giveth and giveth again.

When we have exhausted our store of endurance, When our strength has failed ‘ere the day is half done, When we reach the end of our hoarded resources, Our Father’s full giving is only begun.”

“We are not promised skies always blue, instead a Helper to see us through.”

“Joy is not the absence of suffering. It is the presence of God.”

Songs:

There Will Be a Day – Jeremy Camp

Walk by Faith – Jeremy Camp

Strong Enough – Matthew West

Praise You in this Storm – Casting Crowns

Great Are You Lord – All Sons and Daughters

In My Daughter’s Eyes – Martina McBride

You Raise Me Up – Josh Groban

Let It Be – The Beatles

You Were Meant to Be – Steven Curtis Chapman

If You Want Me To – Ginny Owens

What Faith Can Do – Kutless

The Healing Hand of God – Jeremy Camp

Tiny Light – Cory Woodward

What Children Need

When you are a parent, you are filled with things you want to do for your child. Some of those are simple, inconsequential things like being able to buy them toys every now and then or perhaps buy your daughter that pretty dress in the catalogue. Some of the things you want to do for them are things that leave them with cherished memories – like teaching them how to ride a bike, or taking them on summer vacations. Then there’s the bigger things that you wish to do as a parent – things like keep them safe from harm, prevent them from getting hurt, being able to take away all their fears. The things that as parents we will inevitably fail to be able to do at some point, try as we might.

As a parent, there is not much worse than seeing your child in pain from, or scared of something, that you do not have the ability to fix. We have had our fair share of those experiences in our daughter’s lifetime. Thankfully for the most part, those times are in the past, and she is a healthy girl today. You would think that after all we have been through with her – dealing with her two heart defects, the months of heart failure and feeding tubes, all the needles and medications and appointments of her first year, that anything else would be a cake walk. But it just doesn’t seem to work that way.

And so tonight I found myself sitting here, trying to write a column while my heart and mind were wandering elsewhere. For tomorrow our daughter will be admitted to the hospital away from home for a procedure aimed at hopefully easing her chronic constipation. She will not be put under, there will be no surgery. She’ll merely have an NG tube inserted into her nose that will feed medication directly into her bowel, which will hopefully help clean her out, so that her bowels can start to heal. It’s really pretty simple compared to other things that we have faced, and compared to what many other families have to face.

And yet – it’s not simple to her. She is five and she is scared. She whimpered at bedtime that she didn’t want to go to the hospital and “get a tube in my nose.” She doesn’t want to have to be away from her home, her toys, her cat or her brother or her daddy. She is afraid it’s going to hurt – and I, knowing that it is indeed going to hurt, have to try and come up with a veiled truth. I refuse to lie to her about this, and yet, I don’t want to say anything that will cause her further anxiety. So I try to dance around it telling her that it might hurt, but that in the end she is going to feel much, much better. She has been living with stomach pain for so long, and she is tired of it. She wants more than anything for her “tummy pains” to go away. So this is what I choose to focus on.

But all the reassuring words and all the snuggles, or even the promise of feeling better, can’t take away her fear, and that as a parent is hard, no matter what you may have faced with your child. Or no matter what others are facing with their child. No parent wants to see their child suffer in pain, or be afraid, period. It is one of the hardest parts of being a parent that nothing can ever truly prepare you for.

And so all we can do is love them and hold them, and let them tell you about their fears. Children need to be allowed to talk about their fears, to express them; I’ve learned that it is often their way of coping, of dealing with them. It not our job to tell them they have nothing to be afraid of, but rather, to listen, and then reassure them that no matter what happens, we will always be by their side to support them. For in the end, that is all we can do, and while it may leave us feeling helpless at times, it is what they need from us the very most.

Those Crazy Senses

Once upon a time I wrote a blog entry called “What Is Sensory Processing Disorder, Anyway?” In it I gave a brief overview of some of the things that can be involved in Sensory Processing Disorder. I tried to explain how SPD can affect the seven senses – yes, we have seven senses: touch, sight, smell, sound, taste but also our vestibular sense (sense of balance) and proprioceptive sense (the input from our joints). However, what many don’t realize, and what we ourselves have had to learn over the last two years since I wrote that article, is that SPD can even go much beyond just affecting the “seven senses”. It can be so much more than being sensitive to loud sounds, bright lights and certain touches. SPD can lead to many other neurological and physical issues.

Sensory Processing Disorder can lead to issues physical issues with low muscle tone, fine and gross motor delays. It can lead to neurological problems with motor planning and visual tracking issues, all of which can end up creating learning disabilities or challenges. It can cause emotional problems with anxiety, depression and behavior challenges. It’s often co-morbid with other disorders such as Autism, ADHD, Tourette Syndrome and others.

It has been almost three years since our son’s diagnosis with Sensory Processing Disorder. He has made huge strides, and we have especially noticed a huge improvement in his sensitivities between the ages of 7 and 8. We were told by other “SPD parents” that the 7th year seemed to be a turning point, as they often gain great strides in coping ability. That certainly was the case here.

Our son bathes like a champ now, though hair washing is still not his favorite thing to do, and we have to make sure his face and eyes are covered. He is also now learning to swim, and in the deep end, too! He is even starting to play in water sprinklers. He has no problem at all with public washrooms now, though he will still ask if the toilet is going to be loud. Overall he is coping much better with loud sounds, though sudden, unexpected loud sounds are still upsetting to him (this is a polite way of saying that they can leave him crying and shaking so badly that I have to carry him out of the area).

While introducing new foods is still a challenge, he is now eating all meats like a pro – we could almost forget there was a time that asking him to swallow meat would leave him crying and gagging and spitting it out in the garbage. While he still hates socks and rips them off at the first opportunity, he willing puts them on now, and we’ve finally gotten him wearing shoes other than his rain boots. He still doesn’t like his hands being sticky, and pretty well refuses to use glue, but, he is getting far better at coping when he comes in contact with sticky stuff.

So, while he still has some sensory “quirks”, he has made incredible strides; and we find the biggest improvement is that he now able to better vocalize his concerns, and ask us about the things he is worried about. This is a huge step because it allows us to better gauge how he is feeling, and thereby in turn we can prepare him better for what might be coming.

However.

As his issues with the main fives (okay, seven) senses have been improving, new issues have started rearing their head. When our son was first diagnosed, he was five years old, and truly not functioning like a “normal” child his age should in many areas – after all, getting dressed, bathing, washing his hair, eating, coping with public settings such as washrooms etc… were very difficult challenges for him. At that time, our goals were focused solely on those areas, and we just didn’t “see” the other challenges.

Over the past year, it has now become the other side of Sensory Processing Disorder that we are seeing, that side that few people have any understanding of. As original challenges diminished, we started realizing that our son was dealing with many other struggles. We had him reassessed, and the final results of three different tests from two different occupational therapists came in that our son was over the 90th percentile for sensory dysfunction – meaning, there isn’t much that he processes correctly when it comes to sensory input! And we were just now starting to see how it affects him in the other ways of life.

So… how does it affect him?

While we are waiting for a formal psych-ed evaluation, my mother’s (and homeschool teacher’s) instinct tells me that he may have a learning disorder called Dysgraphia. His OT suspects he may have some issues with Dyspraxia, as well. Dysgraphia and Dyspraxia are both very common among children with SPD, since at their very core, they are caused by poor sensory integration. Now, in our son’s case, he has excellent drawing skills, and his writing is fairly neat, however, in just about every other way, he is quite behind in his writing ability. Almost every single step of the process is difficult for him – from organizing his thoughts to the physical act of getting them on paper. He struggles with how much pressure to use, margins, word and letter spacing, and letter sizing. Even now he’s constantly mixing up capitals and lower case letters. He is extremely slow at writing, and copying text (from a board or a page) is challenging for him – so much so that it can cause meltdowns. This may not sound like such a big deal, but when you have a student entering grade 3 who is struggling to produce the written outcomes expected of a kindergarten or grade one student, it  becomes an issue.

Our son also has what is called joint hypermobility and low muscle tone, both of which are commonly associated with SPD. These issues also largely contribute to his physical issues with writing, as even holding a pencil to write requires physical compensations (ex. how he holds the pencil, how he sits, positions his arm etc…) which causes him to tire quickly when writing. But the challenges from his joints and muscle tone go beyond writing. He has troubles with typical fine motor skills such as tying shoes (it certainly grieves him that his 5 year old sister can tie her shoes, and he can’t), putting on gloves, sometimes doing up certain zippers, using a knife (he has only recently mastered buttering bread and he still cannot cut food at all), opening packages such as chips, candy etc…  It affects gross motor skills such as throwing and catching balls, how he walks and runs (you’ll notice he often keeps his arms held out to the sides for added stability), his posture (poor) and how he sits (slouches, or leans with support).

Then contributing to all these issues as well are his struggles with visual processing and eye-hand coordination, which really just exacerbate all the above issues.

Our son also was diagnosed with Tourette Syndrome at the same time as his Sensory Processing Disorder, which is a common co-morbid neurological disorder. He has both vocal and motor tics that are always present, however, thankfully thus far, the tics that he has are ones that are subtle enough gestures that they are rarely noticeable to others outside of the family. Tics can be a form of a sensory seeking behavior, hence why there is often an overlap.

And so, these are the issues we are working on now. Our son continues to receive weekly “swim therapy” lessons, and also is now taking horseback riding lessons which are helping to improve his core strength, balance and posture. He is overseen by an occupational therapist, and we are on the waiting list for a physical therapist to help us with hand exercises to improve his fine motor abilities, but also help us work on strength training . One of the risks of joint hypermobility (especially in active children!) is the increased risk of injury due to unstable joints.

At home, thankfully, since we homeschool, I have great ability to work with him on his writing, and we use a handwriting program that was given to us by his OT. We also try to work with him every day on the simple, every day tasks that he struggles with, as they come up. The rule in this house is – you have to try to do it yourself, before you can have help. And even then, we try to show him, and then make him do it. Lastly, we are looking into a therapy program called Learning Breakthrough Program. It is a well-researched sensory-integration program that has been around quite some time, and shows great success. It has roots actually based in studies done by NASA in the 60’s, on the effects of balance-therapy on the brain. It is quite a commitment, requiring us to commit to two therapy sessions a day, everyday, for a minimum of 9-12 months. But based on reviews, it appears it will be well worth it.

Our son has made great strides in his sensory disorder and we are very proud of him. But (blessedly) his “disorder” is an invisible one, so to outsiders, he looks and acts like a typical 8 year old boy – he’s a happy, smiling, laughing boy who runs, jumps, plays, pretends, loves Lego, Pokemon and super heroes (Batman is his favorite) and has light saber battles, just like any other boy. Few people really know what goes on behind the scenes at home with his sensory disorder, so it can be very hard for them to understand why I get so proud of him for writing two sentences, when others his age are writing a page. Or, for running through a sprinkler (he does not like the feel of cold water, and does not like being splashed), or for opening a bag of chips, or for getting his hands sticky and being able to wait calmly (albeit perhaps a bit anxiously) until I can wash them. And so that’s where we’re at now!

Cowgirl Up!

Our daughter has made incredible strides in the 2 years since her diagnosis of Autism Spectrum Disorder. She has gone from a girl who was throwing hour-long meltdowns daily (plus numerous smaller ones), to now the longest meltdowns are no more than thirty minutes long, and the bad meltdowns only happen maybe once a week. There are still plenty of smaller ones of course, but even those are getting less frequent.

She has gone from a child who more or less lived in her own world, never really noticing if we entered a room, who was content to be upstairs in the toy room by herself for hours, rarely engaging us, to a child who constantly seeks us out. Who shares excitement and asks us to join in. Who loves to have others play with her. Who loves to share things with us – if she sees something funny on tv, she will grab our face and turn it to the tv, to make sure that we are watching.

She has gone from a child who had no pretend play – when she played trains, cars, dolls, anything – they never made a sound, and she didn’t pretend with them, she just arranged and moved things around. To now, she is a child with a much better imagination. Oh she still scripts a lot (which others don’t realize she is doing, but we know), but she truly has her own imagination now, too, and let me just say sometimes it’s a doozy! It is a joy to listen to her play now.

She has gone from a child who would not accept our comfort, or affection, who never would let us cuddle her, to a girl who asks for bedtime snuggles every night. Who is seeking us out for comfort – oh granted, there are still many times when she’s upset that she needs to be alone, but she is coming to us more and more. She will come snuggle on the couch and actually pick our arm up and wrap it around her. It makes my heart burst with happiness. She has lots of problem areas that still need to be worked on, but she has made huge strides.

She has made strides in the area of social skills as well. Even just a year ago,she had zero interest in peers. She would play with adults and older children, but forget about peers and younger children. She had no interest in them at all – she would not look at them, talk to them, try to engage them, and certainly didn’t care if they tried to engage her.

Fast forward.

Today, our daughter is just a few weeks shy of turning 5, and she is ever-emerging from her shell. Today, more and more, she is trying to engage peers, to interact with them, to talk to them, play with them. And on one hand, I am so happy, and so proud of her.

Just a couple weeks ago at gymnastics class, she and another little girl engaged in a teddy bear fight, laughing together as their bears “wrestled”. And my heart soared, and I looked around, feeling like everyone was missing the small miracle that was happening right in front of their eyes, thinking they should be clapping and cheering. But of course they couldn’t understand just how momentous that moment was for me – to see my daughter actually initiate and engage interaction with a non-familiar child like that.

And on the other hand, it is more painful than I ever could have imagined.

As our daughter emerges from her shell and attempts to interact with peers, her social deficits are becoming ever more evident. Our psychologist warned us this would happen – that as she (and her peers) got older, the social deficits would become more evident, as her peers would progress at a rate much faster than she would, especially once they reached school-age.  He was right.

Over the last few months I’ve really noticed a shift, her friend and other peers have all started Kindergarten-readiness classes. There’s been a change as even now, at this young age, attitudes are changing, little girls are growing up, and they’re growing away from our daughter.

As her peers mature, get older, make friends, start that “cliquish” stage that comes with school, our daughter is slowly becoming “that” girl – the awkward girl, the girl that acts funny, different from them, the girl that fixates on something, who throws herself down on the floor in a sobbing meltdown, curled up in the fetal position in dance class. Even at this young age, her peers are getting old enough to know that something is different, but they are too young to understand – they don’t know why she acts that way, so they ignore her, or they whisper, they stare, they point, some might even make comments or tease her. Yes, even four and five year olds know how to tease another child these days. And while Ashley is thus far thankfully unaware of most of it, am not. I hear. I see. And thus, I hurt for her.

Now don’t get me wrong, our daughter has some great, successful attempts at interacting with peers like the one I mentioned above. But for now, those are the rarer occasions, and overall, her attempts are awkward and sometimes downright painful to watch. Our rough and tumble daughter, who is loud, boisterous and unafraid of anything – is normally shy and unsure of herself around peers. She circles on the outside, unsure of what to do, what to say, how to join in. I try to gently encourage her, give her a nudge, “Just go up and say hello, introduce yourself.” And she gets a moment of insecure silliness, as she giggles, perhaps gives her arms the quick little jerky move that I have learned to recognize as her version of arm-flapping – something she does only when she is extremely happy, or in her silly-nervous mode, and she brings her arms close, her hands to her face, and says, “I don’t know how.”

So I walk her through the process, and then give her a nudge (sometimes physically!) and she shyly will walk up to them, body tense with nerves,  making a sound that is kind of half-giggling, but I know is her, “I’m feeling unsure” noise, and will stand there, waiting. She might say, “Hi, I, Ashley,” but no more, as she doesn’t understand the give and take of social conversations among peers. Once she has said her introduction, she may stand there for a minute, and then will hide her face and come running back to me, still giggling nervously. And I praise her for making that effort. Sometimes she’s content with that, she’s content with having just gone up to them and saying hello, and coming back to me. And I don’t push her for more. End on a good note, I always say.

And sure, she looks shy, silly and awkward, but I’m okay with those attempts. They aren’t the ones that upset me, for I look at each of those as learning experiences. We can build on those.

But then, there are the other times.

The times when she goes up to someone, and she is so desperately awkward that they ignore her and walk away, and she comes back to me crushed, asking, “Why won’t she talk to me?” The times that she goes up to a group that is playing, and she doesn’t know how to join in, so she comes back to me wondering why they won’t play with her. And the sad thing is – they probably would have, if she knew how to approach them.

The times like last night. We went to a movie night at the local school, and our friends were there. Our son  of course immediately ran off with the boys, a group of them sitting together, laughing, joking and playing. Despite having never met some of them before, he interacted with them with an ease that I envied on behalf of his sister.

Our daughter sat sitting with her friend, and all was well for awhile. Until another little girl came over to join them. Now granted, we all know that with children three is a crowd at the best of times – but when you throw autism into the mix? It’s a disaster. The two girls chittered and chattered and giggled. They shared sleeping bags and had fun. And our daughter, so unsure of herself, so uncomfortable with peers that she doesn’t know, retreated. She wanted to join in, she would try at my encouragement, she would go sit with them, but then just sit there awkwardly, not saying anything. And they would tolerate it for a few minutes, but then move on to something else. Over and over again. Each time she would retreat to her chair, and curl herself up in the fetal position, hiding her face, hurt and not understanding. And each time, another piece of my heart broke, watching the whole scenario.

My daughter is strong – emotionally and physically. I think she is one of the strongest children I have ever met – she has been through so much in her short life. She is brave, afraid of nothing. She is stoic and rarely cries. But that night – she cried.

The third time she retreated to the chair, she lifted her head for just a moment and looked at me, and there I saw it – eyes filled with tears, spilling down her cheeks. Not sobbing, not making a sound, just crying silently – the worst kind of crying. Silent tears are reserved for the deepest pain. Not even five, and crying silently because of the pain of not being able to join in. Or wanting to, and not knowing how.

And for that moment – I couldn’t breathe, for the pain I felt for my daughter was so physical. I picked up my girl, still curled in the fetal position and held her as she cried. We rocked. And I cried silently right along with her. I was so glad that we have progressed to the place that she is able to draw comfort from me, because it used to kill me to be unable to comfort her when she was hurting, to be constantly pushed away. I can’t fix this Autism, this Asperger’s – this, whatever they want to call it. But at least I can hold her while she cries, whisper to her over and over that I love her, that she is perfect in my eyes, and that she is a wonderful girl.

These are the moments of heart break that these children, all children with special needs, go through. These are the moments that we, the parents, have to live through. It will get better – I know this, but sometimes, at times like last night, it’s hard to see that. This part of our journey, this difficulty, this struggle,  is new to me. The cut is new, fresh and it’s still stinging. And when I think I’m getting used to it, and it’s starting to heal over – another situation comes along and rips it right open again.

But it will get better. Because my daughter is strong, and so am I. We are not quitters. We are fighters. I will spend every day with my daughter, teaching her, working with her on her social skills. We’ll read books, we’ll talk about situations, we’ll act them out, we’ll use programs, we’ll use flashcards and games, we’ll enroll her in gymnastics and soccer or dance, and no matter how hard they may be for both of us – I’ll make play dates.

It is through our failures that we learn, that we grow. Each time we falter, we will pick ourselves up, dust ourselves off and get back up again. And each time we get a little bit further. My father in law is a cowboy at heart, a huge rodeo fan. And he loves the expression, “Cowboy up!” The expression has a technical meaning of, “Making a determined effort to overcome a formidable obstacle.” In a looser term, it means to keep trying no matter how hard it may be. We have all long remarked that our daughter is a cowgirl at heart – strong, determined, and nothing keeps her down. I like to think I have a bit of that myself.

And so last night, we cried together. And then, the tears passed, we brushed ourselves off, and we tried again. I whispered instructions, words of encouragement – and she approached them again. And later, when the three of them sat huddled together, the two girls laughing with Ashley as she showed them a popcorn trick and they all made silly faces together, she looked at me. My beautiful, strong daughter looked at me with a smile on her face, all traces of tears gone, and she whispered, so happy, so proud of herself, “Look, Mommy. They’re laughing! We’re having fun!” Cowgirl up, baby. Cowgirl up.

1 in 68

It seems today’s society thrives on labeling things and categorizing them into neat little statistics. Millions upon millions (probably into the billions) of dollars are spent every year completing surveys on just about everything under the sun – from how many people prefer summer to winter. How many people eat fast food compared to who are vegan. From how many families are now divorced to how many couples skip marriage completely. And of course there are statistics on every disorder and medical condition under the sun.

My children are part of the statistics world. Both of them have disorders that have been studied for prevalence. My son is 1 in 20. He has Sensory Processing Disorder, which it is estimated that 1 in 20 children have, to varying degrees. But what does that really tell you? It tells you nothing about my son, or his struggles, or his triumphs.

For example, 1 in 20 does not tell you that he loves birds, drawing, that he loves to read, that he sings while he’s using the bathroom, or that he thinks farts are one of the most hilarious things on earth. It does not tell you that one of my son’s struggles is with balance. Granted, this is far from his most significant struggle, but this issue with balance has in turn has made things like learning to skate, to ride a bike, and to swim, very difficult for him. Things that almost all his other friends have no problem doing.

Thomas has been in private swim-therapy lessons for two and a half years now. When he first started at five, he could only wade a little way into the water, could not put his face in, get his hair wet, or stand even the smallest of splashing. Last summer, even at seven years old – when all his friends were jumping in the pool, swimming, splashing and having fun, he was struggling to walk in water that went further up than his waist. He would not even let me carry him around the shallow end of the pool with a life-jacket on. Pushing the issue would result in screaming, tears and sheer panic. And so, last week during his swimming lessons when he swam the entire length of the pool with a life-jacket on, clear out into the deep end – I was jumping up and down, cheering him on, with tears of pride in my eyes. For 1 in 20 does not begin to tell you what a huge accomplishment that was for him.

Our daughter Ashley is technically two statistics. She is 1 in 100 – the number of children that will be born with a heart defect. But that doesn’t tell you that her favorite colors are pink and purple, or that she loves painting fingernails – not just hers, but anyone that she can round up. That tells you nothing about what her struggles were like that first year. What it was like to have a child on a feeding tube, what it was like to have to take your baby for blood work every single week, to be preparing yourself mentally for handing your child over for surgery that would stop their heart and carry the risk of seizure, stroke and death, among other complications. It doesn’t tell you what it means to us every time we look at her today, the picture of health, running strong and hard, scar-free.

And then there is her other statistic – 1 in 68. The number of children today that are diagnosed with Autism Spectrum Disorder. But that doesn’t tell you that Ashley loves Barbies, gymnastics and dance, keeps begging us for a pet dog, or that despite her tiny size she has a roar like a lion! And it certainly tells you nothing about what her life with Autism is like.

1 in 68 doesn’t tell you that she is just shy of five yet still in Pull-Ups. That statistic doesn’t tell you that 90% of children with Autism have bowel issues, including chronic constipation. It doesn’t tell you that she is on medication that leaves her soiling herself. It doesn’t tell you that this chronic constipation also leaves her with urinary incontinence. Or how badly she hates having to be in a Pull-Up, how she apologizes when she messes herself, how we try and console her, telling her that it’s something she can’t control and it’s not her fault. It doesn’t tell you the frustration that I feel and bite back, when someone makes a comment or gives me a “look” when they see that she is still in Pull-Ups, judging us without knowing.

1 in 68 doesn’t tell you that despite having an excellent vocabulary and expressive language, Ashley cannot carry a conversation with peers. She will often ignore what someone has said, or will reply with something completely off-topic. She does not understand the give and take in conversations, the pragmatics of speech, and she does not understand figurative language at all. Anything you say to Ashley is taken completely literally. This often has her getting upset at something that was meant to be funny.

Nor does it tell you of the struggles she has with peers and playing. It doesn’t tell you the hurt I feel when I see her looking at her dance class photo – “It’s all my friends! They’re my friends!” And yet, not one of those “friends” will speak to her. How admitting that out loud at a recent Autism support group meeting made me cry. It doesn’t tell you how my heart ached the day that she told me how a peer had made fun of her, as she was struggling with a fixation.

It doesn’t tell you how I sometimes dread play dates. She struggles playing with children her own age. She will stay with them for a few minutes, but then often just wanders off, leaving them completely on their own. How my heart aches when that child comes downstairs saying, “Why won’t Ashley play with me?” It doesn’t tell you how I worry about her social skills and what they will be like as she gets older.

1 in 68 doesn’t tell you about her intense need for control. What others see likely as “bratty” behavior, is her struggling to have some sense of control over a world that is completely out of her control. It doesn’t tell about her extreme independence, how she struggles asking for help, how she prefers to do things for herself – even sometimes at the risk of hurting herself or getting into trouble with us. It doesn’t tell how when life just gets too overwhelming, too stimulating, too tiring – she melts down. How she will scream, lash out with “I hate you!”, stomp up the stairs, slam doors, perhaps throw things across her room, and often cry herself to sleep.

And we let her – for when she has reached this point, no amount of talking, reasoning or discipline is going to make it better. She needs to release her own overwhelming feelings, and as long as she is not hurting anyone, we let her work it out. For when she reaches this point – our own attempts at comfort, often make it worse. 1 in 68 doesn’t tell you how it feels to be unable to comfort your child.

It doesn’t tell you of her sensory issues – how this same child that has an extremely high pain tolerance, can scream and cry when I try and brush her hair. It doesn’t tell how she struggles with transitions and fixations. She likes to know what is going to happen and when – and heaven help you if that changes. Once she has something in her mind, that’s it. She will repeat it over and over again until it happens. If something happens once – such as getting a Slushie after swimming lessons, she automatically thinks that means it will happen every time, and then gets upset when it doesn’t. It doesn’t tell how she gets overwhelmed in public spaces, and this results in a need to run or move almost non-stop. Or that I know we’re getting judgmental looks for our “undisciplined” child, from those who don’t know her or her struggles and needs.

1 in 68 doesn’t tell you how hard we work on all these issues. For at the end of the day, we will not allow her diagnosis to be an excuse for doing whatever she wants, when she wants. Negative actions have consequences, though they are generally dealt with later, once the storm has passed. And they often need to be worked on in ways other than what most parents would use. Sadly, Autism is often misunderstood by others because it is an invisible disorder – all people see are the behaviors, and not the disorder behind them.

There’s so much that 1 in 68 will not tell you. It will never begin to touch on the struggles of Autism. Nor, it’s joys. And don’t be fooled – there are so many joys hidden in Autism. For, as much as Ashley struggles with peers, she plays well with older children and adults. Even with peers, she is capable of joining in on group games like tag, chase – games where you do not need a lot of one-on-one communication. She loves to run around and play with children, and her laughter will sound across the yard. And when she laughs, she laughs with her whole body – it is vibrant and infectious. You cannot be around Ashley when she is laughing, and not smile or laugh, too.

Some of the things that are frustrating for us – like her determination to get into everything, are also some of the same things that bring us much laughter and even pride. For example, she would not stay out of the pantry. She would constantly go in and steal snacks no matter what the consequence. So we installed a chain latch up high. So, she figured out how to grab a broom and use that to pop the chain out. We then locked the broom in the pantry. She then went to the basement, got the mop and used the mop to pop the chain. As frustrating at that was – it only goes to show her excellent problem solving abilities, and the humor of the situation was not lost on us!

Every day Ashley leaves her mark on the house – and I don’t just mean through messes. She likes to arrange things, and while to us there is no rhyme or reason to what she does, I know somewhere in her mind, it makes sense. Like leaving a hat hanging off a wall light switch. Or, using my seamstress tape to tie the light-switch to the doorknob. Or arranging a toy to sit just so on the entertainment center. These little quirks always bring a smile to our face, as we marvel at her creativity, or laugh as we ponder, “What was she thinking?”

As a toddler, Ashley was very much content to be in her own world, alone. She did not often seek out our engagement. Recently Ashley took to grabbing our chin and pulling our face around to look at something. It was her way of getting us to look at what she was looking at, her way of reaching out to us saying, “This is something I find interesting, share this with me.” Though we have since taught her to ask, I admit, I did, and still take, pleasure in the feel of her hand on my face. It’s the feeling of connection, something I have learned not to take for-granted.

The thing about statistics is that life is so much more than a number. And it’s all these things that the number will never tell, that make life what it is – perhaps full of struggles, yes, but also full of learning and triumphs. For this statistical life teaches you to learn to appreciate the small moments, the simple triumphs, to celebrate the minute moments. What’s more, you realize that it’s all these small moments that most take for granted, that are really the big moments that you’ll remember forever.

It’s Not a Label

I wrote this after reading something on line. Yet another parent with a child who has symptoms of a disorder, who doesn’t want to take her child to the doctor, because she doesn’t want him labelled. It’s a common story in today’s anti-label society. We’re constantly made to believe that the label is evil, horrible, damaging to a child. And so, it’s easy to become scared of a label.

But that’s the sad truth of mental/neurological illness today: everyone thinks we’ve come so far, that we’re more understanding, more aware. But quite honestly, that’s a joke. Mental/neurological illness is every bit as much of a stigma today. Ignorance about it still abounds.

Today’s “thing” is all about the label. “Don’t focus on the label!” “Oh don’t label him! It’s awful to label a child!” “The label is going to hold them back!” But here’s the truth: it’s not a label – it’s a DIAGNOSIS. People don’t freak out when you say your child has diabetes or cystic fibrosis or scoliosis, and accuse you of labeling your child. Why? Because those words are recognized as diagnoses.

And so are Autism, Sensory Processing Disorder, ADHD, Tourettes Syndrome, Bi-Polar, Manic Depression. They are all diagnoses – not labels. The only difference is that they’re mental/neurological, instead of physical. Only ignorance turns the words into “labels”. Unfortunately, our society still doesn’t treat diagnoses equally. Sadly, we’re still more willing to accept physical illness, than neurological and/or mental.

Doctors are not “labeling” children. They are diagnosing them with recognized disorders, in order to get the child treatment, to ensure that they grow up to be healthy and productive to the best of their ability – the same goal of EVERY parent. You can’t get insulin without a diagnosis. Nor can you get therapy without one.

Parents who verbally say the name of their child’s disorder are not “labeling” their child – they are acknowledging what is different about their child. “My child has autism” means the exact same thing as “My child has diabetes”. The parent is merely saying, “My child has different/special/above normal (whatever term you want to use) needs.”

A diagnosis is a diagnosis. Period.