“It’s not a bad lesson to learn in the bleaker months: how you view a storm is a question of perspective; provided you find the right rock to watch it from, it could be the most incredible thing you’ll ever witness.”
― Dan Stevens
Tonight was hard. Tonight was the kind of night that a few years ago would have sent me to bed sobbing into my pillow. It was the kind of night that a less experienced me would have feared. It was the kind of night that I have now experienced countless times. It was the same. But so very different.
If you’ve been here for a while you may have noticed that my older children have been largely absent from this space. There is a purpose to that. As they have gotten older, I have not felt entirely comfortable sharing all of their stories here, because they simply are not mine to share. But at the same time, as they have gotten older, my parenting strategy has had to shift enormously, particularly over the last few months.
Troy is 9 and a half years old. He successfully discharged from all of his behavioral therapies last June. He has gained so many skills. But suddenly, over the last few months, his anxieties have flared up again. He is impulsive again. His temper flares and his moods change on a dime. He can be giggling and sobbing in the same instant. I feel like we’re back at the beginning in so many ways. Except this time, I can’t call all the shots. I want so much to give him his own voice in deciding his own accommodations. If I call for the cavalry, for the return of the therapists to teach him the coping skills that he needs, I want him to be part of that call. And he’s not ready yet.
But tonight was hard.
Tonight Joyce, misreading his social cues, thought it would be funny to throw a cup of water at him. She thought they were having a sort of pillow fight…. She thought they were playing…. The cold water against his skin was just too much. He lost control. He went into a full blown meltdown. Mary was sleeping. I gave him calm instructions. I tried, the best I knew how. It kept looking like he was regaining control, but then he would lose it again. More than 45 minutes after it started, I was standing in the bathroom with him while he pushed me and punched me with all he had, just trying to get it out. Screaming because the rage just wouldn’t let go. My heart broke for him. He had nothing. The deep breaths, the rubbing of his hands on his legs, the primal screams. Nothing was working. I wanted to cry with him.
So many people see him, and they don’t see how much he struggles every day. They will even say to me how he “just doesn’t look autistic anymore.” Like that’s something I should be thankful for or proud of. In many ways, I think it makes things harder for him. I think it makes us forget how hard he works to navigate our world. And without his faithful aide by his side, he has no interpreter, so while he may look more typical, he is working that much harder. And it comes out eventually.
Like it did tonight.
Like it has so many other nights.
But tonight was different.
Suddenly through his exhausted sobs, he heard Mary cry. His screams and bangs had woken her up,and she was screaming. I calmly told him I was going to have to go to her. I told him she was scared, that she had woken up to angry voices and screaming. That she needed me. And I could see it in him. With everything he had he tried. God, he tried so hard. He tried to pull himself together. He followed me out of the bathroom and into Mary’s room. His little body was shaking. She was screaming. She, herself, was now in a full meltdown. Her body thrashing against me and the bed. Screaming and banging her head. She grabbed onto my arms only to push me away and then pull me down again towards her as she kicked again.
And then it happened.
Troy, still barely in control of himself, crawled into the bed next to his sister. And he held her hand quietly. And he let her go through it. Every few minutes he would get up to scream himself. To punch the bean bag chair. Mary continued to scream, and Troy continued to attempt to collect himself enough to hold her hand for a few minutes at a time. And sitting in the bed next to Mary, all I could do was be there. And watch. In awe. Because a full forty-five minutes later, exhausted, they both managed to find their calm. Together.
I have three autistic children. To a new parent, or someone without any children of their own, that might sound daunting. But if you can shift your point of view, if you can watch the storm through a different lens, it is easy to see what a gift it is to each of them to have autistic siblings. They have the gift of always having other autistics in their lives who get it. They understand each other so much more than a neurotypical could hope to. They intuitively understand how ride out the storm together. How to just be there, without all the extra words getting into the way. And even when it’s hard, there is great beauty in that.
“There is nothing like looking, if you want to find something. You certainly usually find something, if you look, but it is not always quite the something you were after.”
― J.R.R. Tolkien, The Hobbit
For three and a half of Mary’s four years, her doctors have been talking about mitochondrial disease. During that same time, there have been many other equally, if not more frightening potential diagnoses tossed about. Essentially every three to six months we have a round of appointments with various specialists, and each time they gently explain to us about another way that we will lose her. We have spent much of her life bracing ourselves for her death. Although I have talked about it here in this space, I don’t think I ever realized just how constant and how convincing that shroud of dark uncertainty had been around us. Think of watching a psychological thriller movie and at the end of it, you suddenly realize, only because you allowed yourself to relax a little, that your wrist is aching and your palms are marked by your clenched fingers.
Our team at our local hospital has been amazing. We have some of top doctors in the world working with us. But they are coming up empty handed. And each time a test comes back negative and another symptom pops up, the mutterings about mitochondrial disease begin anew. On paper, if you were to list out Mary’s symptoms, it lines up. But we happen to have an amazing mitochondrial doctor on Mary’s team. And she has said numerous times that she just doesn’t “feel” like Mary has mitochondrial disease. Certainly reassuring, but she can’t point to anything directly ruling it out. And these doctors have been wrong before. And while the doctors have been going back and forth, Mary has been making gains in some areas, but slipping dramatically in others. She is four. I have always said we would stop this hunt once she was old enough to understand what was being discussed. I realized today, we have reached that point.
Today we saw a new doctor in a new hospital in another state. We left Troy and Joyce at home with Daddy and cashed in some hotel points. Mary and I drove out to Cleveland yesterday afternoon. We checked into our hotel and enjoyed a girls’ night out. It was fun. It was needed. This morning, after a restless night’s sleep, we walked over to the Cleveland Clinic, a world-renowned center with some of the best doctors in the world. It was enormous, the campus sprawling over many city blocks….
Our appointment was for a full hour and a half consultation. The doctor we saw had already discussed Mary several times with our mito doctor here. He was prepared for the meeting. He knew what he was looking for. After discussing her development and her regressions, he confirmed what I had long suspected, that when she contracted the chicken pox from the vaccine at the age of 16 months, it likely amplified whatever set in motion whatever led to the series of regressions she experienced. That said, the vaccine itself is not what caused whatever it is she has. But still, it would explain some of what we experienced a few weeks ago after she received the booster doses of the same vaccines – the extreme fatigue, the distractedness, the paleness and lethargy. For now, we will continue to vaccinate because in this case the symptoms appear to be caused more by exposure to the virus than by the vaccination itself, and obviously exposure to the actual virus (as is more likely these days….) would be far more dangerous to her.
After evaluating her sleep issues, pica, swallowing issues and other symptoms, we talked about mitochondrial disease. This doctor, who specializes in mito, who we sought out as another mito specialist, this doctor who likely knows as much,if not more about mitochondrial disease as any other mito specialist in the world, agrees with our mito doc. Mary does not have classic mitochondrial disease. And this is not just a gut feeling. He pointed out the structural abnormalities, the facial features, the hip dysplasia, and the obvious fact that she is doing relatively well right now. I could suddenly feel the air flow back into the room. I suddenly realized just how certain I had been that he would confirm that this sounded like mito. Instead the conversation turned to other possibilities.
He felt like Mary looks like a chid with an Angelman-like syndrome. Angelman’s syndrome has been ruled out, but apparently there are other versions of this genetic syndrome. Another possibility that he brought up was something called glycosylation disease. Glycosylation, as I understand it – which is not much at this point, has to do with how all of the proteins in the body are folded. It would explain shy so many systems are involved. And from my very limited reading on the subject, it has a tendency to stabilize, meaning that if you have survived it as long as Mary has, then it’s more a matter of symptom management. The catch here is in talking via email with her mito doc here tonight, again, she has already been tested for CDGs(congenital disease of glycosylation). However there are many, many variations of this disease and some labs offer more extensive testing than others.
After having already explained to this new doctor that Mary could very likely understand everything we were saying, I was relatively blunt in my questions – well, in code anyway. I told him that we had been told many times that she had diseases like ataxia telangiectasia (which he knew meant a vey limited lifespan). I asked him, “should we be planning for college?” For a second he looked puzzled as he deciphered my carefully coded question. Then, a sympathetic look came over his face as he said, “oh yes. Yes. Absolutely you should be planning for college.”
Our long drive home this afternoon felt more like a long exhale. Suddenly, all the tension from over three years of testing was lifted, if only for a moment… College….. Maybe Harvard… Or Carnegie Mellon…. Or a local school with lots of trees…. I guess we better start saving up.
Please note: The following is written from my very limited perspective as a neurotypical, hearing mother of three autistic children, with the youngest being the only one who is deaf. I have no first-hand experience as either deaf or autistic. My experiences with both deaf and autistic culture have only spanned a little over four years. The following is based solely upon my own observations. I am painfully aware that, like many parents, my perceptions may be incorrect. I would be tremendously grateful for any corrections or insights you should like to leave in the comments section.
“Once upon a time there were two countries, at war with each other. In order to make peace after many years of conflict, they decided to build a bridge across the ocean.
But because they never learned each other’s language properly, they could never agree on the details, so the two halves of the bridge they started to build never met.
To this day the bridge extends far into the ocean from both sides, and simply ends half way, miles in the wrong direction from the meeting point.
And the two countries are still at war.”
― Vera Nazarian, The Perpetual Calendar of Inspiration
I picked Mary up from school yesterday. It was a perfect, cool crisp fall afternoon, and there were plenty of staff, students and parents walking through the campus on their way to buses, cars and meetings. It was busy. But it was quiet. Students and staff happily signed to each other. As the cool wind rustled the dancing leaves, all I could think was that this is a sacred place. It is not just a beautiful campus, but a place where community is fostered. A community based on not only accepting disability, but focused on using this different ability as the basis of a supportive vibrant and beautiful culture. There is nothing here that revolves around “fixing” or “changing” or forcing the students to become more typical. Here, everyone, hearing and deaf is encouraged to learn the language that the students are already using. My high school world history teacher used to say, over and over, “Language is culture. You take away a country’s language and you take away its culture.” But in watching the students here, I can’t help but think the opposite is also true. If you can share a common language you can develop a culture. And I thought back to the statement that one of Mary’s teachers made to me last year when she explained that some people use the words “speech” and “language” interchangeably, when they clearly do not mean the same thing. My daughter has language, even though she does not have speech. They are not the same. And the beauty of this sacred space is that they get it. And instead of forcing her to do the thing that she cannot, they take the extra effort to meet her on her level, to learn her language instead of forcing their own upon her. And it is beautiful to watch the satisfaction on her face when she knows that she is being understood and that she is being recognized – even if she is not communicating in the traditional ways.
When I watch events unfold in the autism world like what has happened last week, I can’t help but see the parallels to the deaf world. Right down to the language. Many deaf adults will tell you that they prefer to be called “deaf” rather than “hearing impaired” as the former is descriptive of not only their level of hearing but of how they identify culturally, while the latter only points out something that is missing. Similarly, many autistic adults would prefer the label “autistic” versus “person with autism.” Semantics to an outsider perhaps, but a point of heated contention to those inside the community. It is amazing the ability that we have to divide ourselves when, in theory, we should all be working towards the same goals – support, independence and respect for our autistic friends and family.
But I see it again in deaf culture. In our city there are actually two schools for deaf children. One focuses on turning their deaf students into “hearing speaking miracles” who do not use American Sign Language, and do not require an interpreter when they ultimately mainstream into their local neighborhood schools. I know many parents who send their children to this school. It is the school that we tried for Mary when she was younger because it was the only deaf nursery school program we could find. It is the same school that after seven months gave up on my sweet girl – which in our case was for the best. I know the parents who do send their children to this school believe strongly that through hard work and perseverance, their child speaking as opposed to signing will give them a better chance at a “normal” and “successful” life later on in a “hearing and speaking world.” I get that. I completely get that. I would be lying to myself if I said there wasn’t still a part of me that hopes that someday Mary will speak again. And I think it is a very similar line of thinking to the parents of autistic children who initially hunt down every therapy, any diet or biomedical treatment, hours upon hours of ABA and social skills groups so that their autistic child can learn how to be “normal.” And, sure, for some deaf children and for some autistic children, the appearance of normalcy is a completely attainable goal. But the work of getting there and maintaining it can be completely exhausting. That is a choice that is made within a family. We are all just trying to do the very best we can for our children, and if that works for your family and your child, then that is what you need to do. After sampling some of that lifestyle, we chose a different path.
After we left the first school, we were welcomed into Mary’s current school. This sacred place I was telling you about. At her old school there was constant crying, sheer exhaustion, even seizures brought on by intense fatigue, and regressions. But here, she has blossomed. Here, she smiles and flaps her hands excitedly as we pull through the gate each morning. Here she is greeted by friends and smiling teachers. Here they watch her and take their cues from her. They accept any form of communication she is able to give. They recognize when she makes a choice with just her eyes, they cheer when she makes a choice on her ipad, and they encourage any kind of gesture she is able to make. They encourage and celebrate her, just as she is. They accept her. And she has made such progress here because of it. Because, here, no one tries to change her. No one tries to make her “normal.” Here there is just patient, loving encouragement and acceptance.
It is unlikely that in the hearing world you would find folks frowning on the use of American Sign Language. In fact, in many large events, political speeches, performances, and even emergency announcements, you may see an interpreter standing just to the side, making it possible for the deaf people in the audience to understand what is being said. No one gets angry with a deaf person for being unable to hear. They simply make the necessary accommodations and move on. Why, then, is it so hard to believe that this same society could simply make the necessary accommodations for the autistic community? When a deaf person signs instead of speaking, we do not instantly assume they have nothing to say. We either converse in ASL, or find an interpreter, or even a pen and paper if need be. So, why when an autistic person is communicating through behavior do we simply assume they have nothing to say, or that they are lost in their own world, or that whatever it is must be something that needs to be normalized?
Obviously, these are two very, very different communities, but there are similarities as well. There is opportunity for one to learn from the hard-fought lessons of the other. Because, at the end of the day, the parents, the advocates, the self-advocates, the autistic adults, and the autistic children who will soon be adults, all have the same basic goals, even if the interpretations are different. One of the huge successes of a school like the one Mary now attends is that the school is its own community, and involved in all the decision making and administration of the school are many deaf adults. The community that is working with these deaf children and young adults gains a great deal of input from deaf adults. They listen to, respect, hire, and put in executive and teaching positions people who understand from a first hand perspective what their students are going through. And that perspective is seen as vital. Just as the perspectives of autistic adults on all ends of the spectrum should be considered vital when a parent is trying their level-headed best to raise a happy, self-confident, fulfilled autistic child. Because if we could just step back a minute and listen to the folks who have already made this journey ahead of our children, they might have some powerful insights… They might be able to interpret…. And they might even be able to help us learn a whole new language.
“All you need is love. But a little chocolate now and then doesn’t hurt.”
― Charles M. Schulz
We’ve had some news this week and I’m not quite sure what to make of it. My mind is racing, and once again I am searching through literature trying to make sense out of the latest round of test results. Once again I am waiting to hear back from researchers literally around the globe who I have been talking to, trying to pinpoint an underlying cause (and hopefully some sort of roadmap) for all of Mary’s symptoms. But now, we have a new one to add to the list.
We saw endocrinology last week. It was supposed to be simple, but like so many other times when the genetics team has requested a consult, it didn’t end up that way. Over the last few years we have had multiple metabolic panels, glucose tests, thyroid function tests… All of it has always come back completely normal. This, whatever it is, is not metabolic. In some sense, metabolic would be good. Metabolic could be treatable…..
So last week they ran another round of tests (to follow up on some other tests). My heart breaks for her every time they have to draw blood from her. And then, this week they drew still more blood to follow up on the results from last week’s tests.
After years of testing, suddenly her thyroid is not putting out enough thyroid hormone. There appears to be nothing wrong with her thyroid. The problem is actually that her pituitary gland, which is located in the brain and controls many other glands as well, is not doing its job by telling her thyroid to put out more hormone. So now, we have a new development. A new system is involved, and it just so happens to be the endocrine system (which is very often affected in mitochondrial disease). All by itself, this is relatively simple – they give her a pill once a day for the rest of her life that will replace the missing thyroid hormone. It might even help with some of the fatigue – at least I hope it will. But since it had always been normal before and she still had such fatigue then, I am not sure if it will help much…. In terms of the larger picture, I’m not sure what to think.
This is something that has developed. Which means that whatever disease process she has is progressing, and we still don’t even know what that is…. Or what is next… In some ways it looks like the final piece to the puzzle. The endocrine system was one of the last two major systems in Mary’s body that had been left unaffected…. Before this little piece fell into place, I had moments where I could talk myself out of the thought that she has mitochondrial disease. That it is something else, and all this therapy that we are doing will mean independence for a long, healthy life. That we could manage it. That she would continue the forward progress she has fought so hard to make…. It’s harder to reason myself out of this now. This looks more certain…. But I’m not a doctor. I’m not even a researcher. I’m just a worried mom who reads a few too many science journals. I could still be wrong. I’ve never wanted to be wrong so badly….
Add to all of this, Mary has struggled over these last two weeks. Despite her enormous progress in her physical therapy sessions, she has been…..just….. off everywhere else. That terrible fatigue has returned. She has become very pale. Nervously, I had her doctors repeat a CBC (complete blood count) to make sure we weren’t seeing a sudden drop in her red blood cell counts. The nurse who read off her results to me this morning was alarmed – the count was low, but I knew it was the same low that it has been. So she’s okay there… For now….
Any other kid could have an off week, and it would be okay. But with so many things to track in her, so many symptoms to manage, we have to jump at every change. It’s exhausting, and scary. I got called just fifteen minutes after dropping her off at school the other day to come pick her up. She has been having enormous difficulty with fatigue in school for the last week. Last night she trick or treated at just two houses from her stroller before the fatigue of just being out in the cold became too much. It was difficult to watch. Fortunately, she was able to get some Halloween fun in at her school the night before, but even that was difficult for her. And so yesterday, when I had trouble rousing her in the morning, I opted to keep her home. To give her a day of nothing. A day of resting with her Mickey Mouse dolls in her room. A day with no expectations. And I think it helped her. She seemed happier in the evening. She even dug into some of her hard-earned Halloween candy. (I think she has decided that Kit Kats are her favorite – she gets a stick of chocolate for each hand. ) She is still so pale though. I’m not sure what to make of that. I’m not sure what to make of any of it.
It’s weeks like these, when she suddenly looks so fragile. When I am suddenly reminded of the fears that I try to keep quarantined in the back of my mind. These are all clues to a mystery. We are getting closer to the answers…. and I’m not so sure I want to know what they are….
Trick or Treating at Mary’s School
“Once you can accept the universe as matter expanding into nothing that is something, wearing stripes with plaid comes easy.” ― Albert Einstein
This should be a small thing. In the scheme of things, it is a small thing. After everything we’ve been through, this should be easy. And truthfully, I am enormously grateful for the team we are working with who are doing their best to not only make it easy, but to make it a little bit fun.
We ordered a wheelchair for Mary yesterday. A wheelchair. That thing I had been afraid of getting for her since she was nine months old, and it looked very uncertain that she would ever walk independently. She has come so far. So very far, and I couldn’t be more proud. In fact, just last week, I was boasting with no shortage of maternal pride on how strong she has become. But it takes all she has, and while that is great during a 45 minute PT session, it’s not very useful for daily outings when she should be able to put some of that precious energy towards actually experiencing the places we are visiting – the zoo, the mall, the park…
She has a stroller. But she is four and rapidly growing out of it. She has never had good positioning in the stroller either – an issue since not only does she spend a fair amount of time there, but she snacks on the go, and given her current feeding concerns, proper positioning is important. Her doctors and therapists have been talking to me about pediatric strollers for a while now. It’s a familiar conversation, but I kept putting it off – she still fits in the newest stroller I purchased. Well, I think she fits…. Her new team of physical therapists would beg to differ. So, at their urging, I quit procrastinating. I scheduled an assistive technology evaluation.
I can’t tell you how grateful I am for this community during times like these. Before our evaluation I was able to talk to many other special needs parents about what kind of stroller would be best. I got a lot of suggestions. But mixed in with the stroller suggestions were more than a few brave mothers urging me to consider the wheelchair. They pointed out that it would give her a bit of independence and that it would be more age appropriate. I flinched at the idea at first. But these women made good points, and I was forced to listen. And I am grateful. Grateful that they would take the initiative to offer a bit of advice that in any other circle might have been taken as insult. But, here in this safe space it could be quietly considered. And the more I rolled the idea around in my head, the more I thought about how the children in Joyce’s Daisy Girl Scout troop respond to Mary when she shows up in her stroller. She is less than a year younger than some of them, but they refer to her as a baby. The children at the mall look at her as a baby. Even today, one little girl who looked to be about two and was walking with her grandmother asked Mary why she was sitting in a stroller. It’s just not age appropriate for her anymore. I’m not sure why I had thought that a larger stroller would change that.
I mentioned the idea to my husband. He bristled at the idea of putting Mary in a wheelchair. In fact, I heard the same sentiment repeated by one of her physical therapists – “She can walk, I can’t put her in a chair…” And her pediatrician even echoed the idea of a “chair” being extreme. So I backpedaled and decided we would get the stroller. Something that she could sit in comfortably to pushed around in. Something simple and functional. So I went in thinking stroller.
The PT doing the eval cautiously looked at Mary and asked if I had given any consideration to a wheelchair instead of a stroller, especially given her unknown diagnosis. I could tell she was feeling us out, weighing her words carefully searching for a response, an opening…. I shared with her the ideas given to me by these other parents. I told her that no matter what we decided, my priority was independence as much as possible, and that as much as possible, this would be Mary’s decision.
Well, the PT immediately agreed with this suggestion. She hurried out of the room and came back with three sample chairs to try. She also got a few strollers for comparison. The representative from the medical supply company agreed with the PT. In fact he said insurance would be more likely to pick up the tab for a wheelchair even if it is more expensive because they often view a stroller as a stopgap purchase until the parents are ready for a chair. All this made sense. But I was still skeptical about putting her in “a chair.” I wrestled with the voices in my head, the faulty notion that putting her in a wheelchair would somehow make her more disabled… I mean, she can walk, right? I forced myself to take a step back and look at her objectively. In the stroller, she sits back and is largely sheltered from what is going on around her – “safe” I thought, “withdrawn” remarked the PT…..
Then they moved her into the first of the three itty bitty wheelchairs. She sat up so straight with the support of the chair. But it was the smile on her face did me in…
She has never been in a wheelchair before, so of course teaching her to push one herself would be a big undertaking, right? Wrong. She put her tiny little hands on those wheels and smiled. And then she started moving herself back and forth around the room as I stood in awe.
We tried her in couple of strollers. It wasn’t worth photographing. About halfway through the appointment, I stood her in front of a stroller and a wheelchair and asked her to choose. She studied them both thoughtfully for a moment. I sat silently next to her and waited. I asked the evaluators in the room to do the same. Quietly, a smile spread across her face as she zeroed in on the wheelchair and flapped her hands at it, asking, in her own way, to get back in.
Next we were on to picking out the details – the type of brakes, the type of foot rest, armrests, etc. And, of course, the color. Since the color had nothing to do with positioning, I was free to give this choice directly to Mary. The PT thought bubblegum pink would be perfect. I thought we would be between that and the lovely purple color they offered. I put the color samples in front of Mary. I told her we were picking the color for her new chair. After looking at them for a moment, she selected the green. Granny Smith green. I smiled and asked her if she was sure. Didn’t she want that purple? Or the pink? I would swear to you she scrunched her little nose at me as she defiantly grabbed the green and shook it at me. Purple hearing aids…..Purple glasses….Pink shoes… Butterfly braces…. I thought of all the accessories when I had chosen for her because I didn’t think she could understand to make a decision like that and then have to wait a month to see the results…. I chatted with the evaluators for a few more minutes and then asked her again, what color would you like? Again she chose green, and in hindsight, if I had been in her shoes I would not have been so gracious with me. And of course, just to be sure, before we left, I asked her on her iPad. Green. Yes, I asked her four times, and she must think that her mama doesn’t know her colors very well. I am still learning. Not just about colors but about learning to trust my little girl who’s not at all a baby anymore. Rather, she is growing into a self-assured young lady who knows what she wants and I need to learn to back up and just listen to her.
We ordered the wheelchair. She should have it just after Christmas. At the end of the day, the only reason to order anything else would have been the stigma attached to the wheelchair. A stigma that is held by us, by the grownups, but not by her. To Mary this chair is simply another way for her to engage and explore her world while preserving her precious energy reserves. To her, it is simple, as it should be.
This is the model we settled on. In green, of course.
“Kites rise highest against the wind, not with it.”
― Winston Churchill
Are you listening? I need to brag. Loudly. ;)
I need to tell you something. I want to put a big sign up on a huge skyscraper, or rent one of those banner-towing airplanes. This is a big deal.
She couldn’t walk when she was younger, and to be honest, for a while we weren’t sure she ever would. And when she did…. I was breathless…. My husband and I were sitting at the play area at the mall with tears of joy streaming down our cheeks, watching in amazement as our sweet baby girl just walked away from her walker. It was incredible.
We were warned by many doctors that we might lose more skill. That her balance may fail her. That the fatigue may get the better of her. The progress was exciting, but tentative. She had an amazing physical therapist through early intervention. A miracle worker in the truest sense of the word. But last year, as Mary moved on from early intervention and into preschool, we said our goodbyes. Mary continued on with a shorter session of physical therapy at school, which helped to maintain the hard-fought progress she had made. We didn’t want to put too much into her schedule. We didn’t want to risk more of those episodes – the suspected seizures that seemed to accompany an overburdened schedule. So we took a step back from her therapy schedule. Then a few short weeks ago, we started up again. This time with a new team of therapists at an incredible facility. They were strangers to us. They had not been with us on this journey. They cautioned me that Mary had a long way to go if we were going to accomplish some of the lofty goals we had discussed. Goals like walking for a full six minutes on a treadmill. This seemed out of reach a few weeks ago. She barely managed a minute and a half the first session. She was left exhausted for several days from the effort. The little standardized tests that they like to run for the insurance companies were disheartening. She didn’t even register on the scale in most areas. She was slipping in other skills as well.
But then something happened. She started working. Really working hard. A total of three physical therapists, three times a week. One at school, and two after school. And then, instead of coming out of these sessions telling me how exhausted she was, there were smiles of surprise, and “you wouldn’t believe what she did….” Each day it was something new. Little steps to some, but enormous victories for my sweet girl.
And then today, after making steady incremental progress towards that seemingly elusive goals of 6 minutes on the treadmill, she blew right by it. Today, with a smile and giggles, Mary walked for TEN MINUTES on the treadmill. Ten minutes at a lightning fast pace for her, 1.2 miles per hour. Holding onto the rails, she extends her little legs on that machine in a way that I have never seen her do on the ground. It’s breathtaking. And, seriously, TEN! Ten minutes at her top speed. Sure, she was toast after that, but wow!
Tonight we will celebrate. She is amazing. Tonight I am one proud mama.
“A single dream is more powerful than a thousand realities.” ― J.R.R. Tolkien
Four years. My sweet little baby girl is four years old. It seems unreal. These have been the four years that more than any other time have defined my own life, challenging me, shaping me and teaching me more than I could have ever imagined possible.
Just two months before Mary was born we received our first of three autism diagnoses. By the time she turned two, all three of our children had been officially diagnosed. It has been a whirlwind, yes. But an amazing and exhilarating time of learning and discovering so much, not just about our children or even ourselves, but a time of learning a new way of life. A new way of living out dreams.
I have struggled with the medical end of things. The unknowns, the fears. But to live life through that sharply focused lens has brought everything into a fresh perspective. It has helped me to understand what is really important. And having the helping, supportive hand of the autism community along with so many wonderfully supportive, friends, teachers and therapists has meant more to me than I could have ever imagined it would.
But you know all that already.
As much as this community has lifted me, my children have been teaching me. They have been showing me. This. This new way of being. A new way of seeing.
She looks at the trees, and I would swear to you, that she does not see a single tree, but rather hundreds of individual dancing leaves. She sees the individual parts. She sees the individuals, each playing their part in the dance, in the enormous chorus of this wind in the trees. And more, she sees the individual rays of sunlight making their way through each individual dancing, laughing leaf, gracing the forest floor with their heavenly light. She looks at it all with such wonder. And she makes you stop. She makes you see it too. And it is beautiful. And that brief moment that you take to sit with her and watch, and see, really see…. It changes your whole world.
This. This is what has been life altering.
And this is the gift of autism. For all the hard stuff (and, yes there’s a fair bit) I don’t think I could trade it, if it meant giving up these gifts. Because without it, would she see the world the way she does? Would she lead us to see the world, just a little bit, the way she does?
And without it, would my son be able to focus so clearly on that one thing that he loves? Would he be able to be so in tune with his other autistic friends in a way that, frankly, makes me jealous of the bond they share?
And without it, would Joyce, my little middle, be able to be so free, so unabashedly excited, bubbly, spirited and happy? Would she be able to express her joy in the flappiness that has become her trademark? She is so free and uninhibited. When she is happy, she exudes a purity of joy that I have never witnessed anywhere else.
These are the gifts, my friends. And for all the hardships, all the worry, all the fear, they are worth more than any mountain of gold. These lessons, this dedication, this beauty, this joy… Yes. This is what we were put here for. And I am forever grateful for all of it.
“It turned out all she could see was the fountain; she’d taken it in and was ready to move on to the next sight. I hadn’t finished looking at the fountain yet because, to my vision, the fountain was a collection of dancing interlocking patterns that each needed attention. Though it took me much longer to take in that fountain, I realized that the richness I experienced was so much deeper than most people ever see. I began showing her the textures in the water, the way you could see the individual water drops held in mid air sparkling in the light, the unusual colors blended in the pool .. endless vignettes that to me were huge and visceral and to her were just a fountain.” – Michael Moon, autistic musician, artist, and author
Four years on this journey. Four beautiful, exhilarating years of learning to slow down. To see the textures in the water. To see the parts of the whole. And wherever this path may lead us next, I will always be grateful for this. For this gift that autism has given us.
Happy Birthday sweet girl.
Just another perfect day
Bring it on ’cause I’m on my way
I’ve got a laugh to share I’ve got a dream to chase
Always something new to learn
Can’t wait to take my turn
I’m gonna turn it up ’cause it’s another perfect, perfect day
~from the Fresh Beat Band – Mary’s favorite song to listen to on the way to school.