I'm Not Driving

It’s been a while since I have been able to find some time to write, and even when I’ve had a little time, my thoughts and emotions were so scattered, I chose to spare any readers the experience of navigating what would certainly be a disjointed commentary. An update, check in or whatever you would like to call it is certainly in order because it’s been quite a year in 2019.

Adjusting to life with four children and managing one on the spectrum has been…how should I put this….a challenge. 😬 We are great and blessed for sure, but I remind myself all the time that it is one day, one week at a time. Re-entry into school always introduces a shock of sorts as everyone gets settled into new classrooms and new routines. We have had to adjust to new staff for Jim, and that is always somewhat of a get-to-know you process. Our experience with past transitions has certainly helped over the last few months in that regard.

I have always been a big proponent of communication among parents, teachers, and therapists. It can be exhausting managing therapies, strategies, study habits, and routines, but these are the trenches of parenthood. I always try to have an aim of where we are going. There’s a supposition that therapists are always goal oriented, and that is not always the case. Folks can easily get sucked into an endless therapy routine that can devolve into wandering aimlessly. Life is busy enough without maintaining a schedule of therapies or tutoring that isn’t purposeful.

One of the challenges over the last few months has been to recognize when Jim has gotten overwhelmed. It is a little like back when he was in preschool, and we had to learn to recognize when a meltdown was potentially coming. The signs were not obvious at first, but with time and unfortunately, experience, we learned when not to push a situation and punch out. The last few months have presented a number of situations that felt similar to this preschool years. Now that he’s older, we can talk through them better, and I have to give him a ton of credit that he’s able to harness those responses with more strength of mind. It’s a good feeling when you see the confidence build simply from helping him feel more in control of his emotions and whatever situation may be in front of him. It’s hard to explain to folks that may see a behavior as just defiance, but as an autism parent, I always look for the underlying factor(s) and can often see what is causing a particular reaction. I have used the same approach when talking through situations with our oldest typical son, and for that matter, our typical 3yr old. All kids can run into situations that are difficult to process, and they need the tools and counseling to help them understand how to navigate. All my kids, even the baby, want to be heard. I get it that sometimes kids can be jerks, but a lot of times it’s a little more involved than that.

We are always advocating for our kids, and part of that is also to let people know when it’s time to back off. While the gentle push is an essential part of being an autism parent, I really apply to all our kids. The gentle push is always having to gently nudge your child out of their comfort zone; because otherwise you have little growth and little progress against symptoms. It’s the same with typical kids: no nudge, no growth. Over time, I have come to discover that an equally important part of the gentle push is recognizing when to back off. In the same way that you nudge your child forward out of love and care for them, you back off for the same reason. Many of my best moments with my kids have been when I’ve recognized that they are overtaxed in some way, and I called a time out for them. I guess it’s kind of like being a coach on the sideline and recognizing when your player needs a break. I can honestly say that those moments have brought me closer to my kids and built on the trust between us. They know we will push them, and they know that we will advocate for them when they need a break.

So as a parent, you learn when to back off, and one would think that others would have a good radar for that whether they are teachers, therapists, or medical professionals. I am here to tell you that it just ain’t so. It is an uncomfortable conversation to be sure, but one that I have had to have a number of times over the years. In each case, I really do not believe that there was true negative intention, but rather a complete misunderstanding or lack of recognition for the situation at hand. I try to give people the benefit of the doubt, and I’ve been very glad that I did over the years. With that said, I’ve had to raise my hand and let people know when enough is enough. Sometimes that has been exiting a situation, explaining what I’m seeing through a parent’s eyes, or reminding therapists that my child is a person with feelings, not a classroom guinea pig. I have had so many conversations with other parents who have struggled to find their voice, but over time they begin to gain experience and perspective. I always encourage them to communicate and speak up. It’s vital to have an ongoing constructive conversation with whoever is engaging with your child as they are playing a role in their growth and development. I’m grateful for all of our partners along the way, and I’m grateful that we’ve been able to navigate the tougher conversations and celebrate the victories together.

There has been so much progress over the last six months or so for Jim. On the social front, he’s more engaged with everyone at home and at school. The social engagement really means a lot to us and warms our hearts. His older brother has never said much about it, but I have sensed over the years that he’s felt lonely at times. Where there should have been a built in play pal, there just wasn’t. Nowadays, they are truly friends as well as brothers, and I have loved seeing them grow closer. I have always felt like the limitation for Jim was not a desire – he’s always liked being around his peers – it was the engagement itself that demanded language and adaptability that was challenging for him and led to avoidance except in only a handful of instances. There’s a supposition that autistic kids that struggle with social skills do not feel or care like other typical kids, but I will tell you that is just not so. Jim loves and cares and loves and care BIG. He always wants to know if we are going to be at school early enough that he gets to hang out in the cafeteria with his classmates. This is the same cafeteria that he refused to enter out of fear a couple of years ago. When I see him connecting more with his siblings, with me or Daddy, or with other friends or school classmates, I have a hard time holding back the tears. It’s in those moments, I have to confess that I say quietly, “take that autism”. I’ve said it before, and I’ll say it again…..do not cede ground parents! It’s worth the fight for your kiddo, keep believing in their ability to notch progress.

Academically, we have had our headwinds, and it’s a daunting task to figure out how his brain processes certain concepts. I am not an educator, and so this is new, uncharted territory for me. I suppose navigating the new academic material is not unique to autism as we all have our relative strengths and weaknesses. Autism processing issues just add a different wrinkle to that set of challenges. Some things are so super simple for him in kind of an amazing way, and others are not so much. What has been kind of cool though is to see him work through a particular task or challenge and to have him realize he can overcome it. We’ve seen a greater sense of confidence as a result. The brain is really amazing that way.

I’ll close with this thought. I have seen or heard a few situations recently where it has seemed like the parent was either in denial or not wanting to understand the child’s reaction for what it truly meant. I’m careful not to play expert on other people’s kids, especially if I don’t know them well. With that said, sometimes I hear or see something, and my experience tells me something different than what that parent is relating. Maybe it’s autism, maybe it’s not, or maybe it’s just a parent not really listening or understanding their child and respecting their feelings or preferences. Whatever the case, I hope all of us take a step back every now and then and take stock of our kids, and if needed, find ways to pivot in a positive direction for them. Love your kids BIG people! 💙

The New Year always seems to bring on more reflection as we look back over the past and project hopes for the next year. It’s a useful exercise for all of us as parents to give thought to how our kids have grown and changed. In the same way that we all tend to come up with areas for improvement and take on resolutions for the New Year, it can also be good to recognize areas where our kids have made strides or where they maybe need to tighten things up. It’s a marathon, not a sprint, this parenting gig. One of the silver linings of managing special needs is that therapies and intervention require regular progress checks, which we naturally translate over to our other kids.

Over the last year, our family has once again gone through a tremendous amount of change. About this time last year, we found out we were pregnant with our 4th child. With this happy and a bit daunting news in the background, there were growing pains for all our boys throughout the year, ramped up work demands and a nice new clock ticking away each week until baby was to arrive.

I’ll be honest and say I felt like we were in the trenches a lot last year. The changes and challenges our kids were navigating were not straightforward from a parenting standpoint. We got through them, and conquered issues gave way to others, but the year felt transformative (in a good way), especially for my older boys.

At this time last year, Jim was beginning to show greater independence in the classroom, but he still needed assistance with staying on task, sitting in his seat, and not speaking out. A staffing change definitely rocked his world, and we spent a few months getting acclimated to the new arrangement. Staffing changes are a fact of life, but that doesn’t make the transitions easy no matter how great the new teacher or therapist is. We started to see positive signs of progress as we ended first grade, but I don’t think anyone anticipated full independence in the classroom was around the corner. We started second grade with our teacher asking to allow Jim the opportunity to give full independence a try. He seemed to take to it right away. He’s been with these same kids since 4K, and I really think he enjoyed being a regular student like everyone else for the first time. He’s still needed some help here and there, but the progress over the last year has been amazing overall.

I always hesitate to declare any type of victory in this battle because with autism and brain development, you don’t know what is around the corner, but I will say that Jim is a good example of how early intervention can be effective at notching progress against the symptoms of autism. We have other stubborn symptoms to work on, and we will keep battling alongside him. No doubt the progress in the classroom is a great achievement for him.

Transitions to a new school and just growing up in general have dominated our oldest son’s world. It’s not easy to be the oldest kid, and we have certainly leaned on him more this year with all we have had going on. From a parenting standpoint, I try to balance wrapping our kids up in love with nudging them all along the way to grow and learn. That has probably been felt more by him this past year as we have entered this age where it’s time to start growing up a little bit. I’m conscious about not making our kids grow up too fast. There’s plenty of time for them to be responsible adults, but I also don’t want them to be emotionally clueless as they enter pre-adolescence. At this age, it’s incumbent on parents to instill self-awareness vs. self-absorption and courtesy vs. obtuseness.

As I said, it has felt like we have been in the trenches this past year, but I often think that the efforts we make as parents at all of the little things at more complex ages and stages help our children to discover and fully become the people they are meant to be. They will make mistakes, and we will help them up when they stumble. One of the most important things for them to learn from us is unconditional love.

I still remember having a conversation some years ago with my oldest when he had gotten busted in a lie for the first time. He was terrified of what I might say, but in that moment, I wanted him to know he could always tell me the truth and never needed to lie to me to cover his mistakes. It occurred to me that he had never heard me say one of the most important things a parent can say to their child. I had told him I loved him and was proud of him hundreds of times before, but this time I said, “Do you think there is something that you could do that is so bad that I wouldn’t love you anymore?” He really didn’t know what to say, and I could see he was trying to think of something that would be really bad. He slowly nodded “yes?” and then “no.” with little conviction. I stopped him and said, “No John, there is nothing, absolutely nothing, that you can do that would make me not love you. You may do things that make me angry, or frustrated, or sad, but my love for you will still be there. There is nothing that you can do to change that.” His face softened with relief and recognition washed over his face. I think sometimes we assume our kids get it, but it always helps to say things out loud. They need to understand the power of redemption. He knew he was still grounded, but he also knew we still loved him.

We start the New Year feeling extremely blessed for all the ups and downs and the growth that came with the past year. We are super thankful for the addition of the baby girl to our now pretty big family. Here’s wishing everyone a Happy New Year!

April is Autism Awareness Month, and I looked at the calendar and realized that if I did not hurry up with a post, I was going to miss it!   The last few weeks have been filled with a lot of great conversations with friends, parents and therapists that have reminded me that this journey and the triumphs and struggles that go with it are shared by many children and families.  There is a comfort in knowing that you are not alone and that there is support not just among autism parents but typical parents as well.  The one word that has dominated my thoughts as I contemplated this post was Awareness.  That word, in the context of Autism Awareness Month, brings an obvious connotation of seeking to bring to light for as many people as possible a greater understanding of autism and how it can affect children and their families.  And yet, awareness permeates so much more within the autism community.  After all, awareness of the world around them and the ability to connect to it appropriately is exactly what autism seeks to take from these kids and adults who are afflicted by it.

Early intervention is all about seeking to reverse that disconnect (and in some cases, hyper-connection) within the brain so that the child can operate in their various environments.  Parents are first challenged to understand the problem, and that problem is a unique array of issues that are often a completely foreign language to parents.  Suddenly you are taking a crash course into the world of autism and all the various symptoms, therapies, approaches, and treatments available.  Even more daunting is the fact that there really is no playbook.  The appropriate direction for your child is unique and changes as you go along.  You would be surprised at how many providers are reluctant to arrive at an autism diagnosis no matter how clear the case may be based on symptoms presented.  In our experience, no matter how many times we asked the question, it seemed as though no one wanted to be the one to formally say it.  As crushing as it can be to hear the word autism associated with your child, it is a relief to finally have an answer and to then develop a game plan to then help them.

The awareness I see that is most needed and frankly, critical, in directing parents towards early intervention is among the group of folks on the front lines of working with young children every single day – teachers.  I have often heard teachers and administrators say that they do not feel comfortable in saying something to parents when they see something of concern with a child.  Their reason is usually that they are not allowed to diagnose.  I would offer this parental input though.  I do not expect teachers to diagnose children as clearly that falls within a different realm of medical expertise, but I think that all teachers should be armed with a basic knowledge of Autism Spectrum Disorder (and ADHD) and be able to identify and communicate those warning signs to parents to prompt them to pursue additional evaluations.  Just as a teacher would raise a hand if they see difficulty with fine motor skills, math or reading, they should be able to identify things like speech delay, focus and attention issues, gross motor control, stimming behaviors, and echolalia (scripting).  Bringing those issues to the attention of a parent can be critical in the parent pursuing additional evaluations and beginning early intervention therapies.  In the world of autism, 3-6 months is crucial time, and the ‘wait and see’ approach can do a lot more harm than good.

Whether it’s a formal seminar or simply doing a little light reading, being armed with the knowledge makes a teacher more effective and able to pass along this vital information to parents and could make the difference between whether the child gets the help needed or simply struggles until the situation deteriorates to a critical point.  Remember that autism symptoms vary with environment, and what you see in the classroom may not be happening at home.   Teacher input is so very important, and it should not be presumed that the parent knows about certain tendencies or behaviors because the child’s behavior is often very different within the predictable and familiar home environment.  Without the input and direction from one teacher, we may have been slower to start speech therapy for Jim, and I have no doubt that our story would be very different had we not acted as early as we did.  If you are a teacher and reading this, please take the time to learn as you could be integral in getting a child the help they need.  For school administrators, if you are not arming your teachers with a protocol for communicating their concerns, you are effectively abandoning these students.  Any institution involved in early education will likely have an autistic child come along at some point (the CDC just updated the number to 1 in 59 children from 1 in 68).  If the game plan is just to deflect until they go away, you are failing these kids and their families.

I did not know that I would come to appreciate awareness as much as I do today when we started down this road, but we have continued to make strides with every passing month.  We started all this in speech therapy and took a break from speech when we enrolled with the Angel Program.  We circled back to speech therapy again not long ago not to work on speech but more to focus on language.  For many children on the spectrum, the abstract or less concrete concepts are more difficult for them to ascertain.  Language is full of inferences, implications and the less concrete.  It can be difficult for kids to know the right words to say to convey a particular feeling or to say what they really mean.  What’s more, they never know what the other person will say in reply, and that can be confusing.  For example, on a number of occasions when I have had to tell Jim ‘no’ or to stop doing something, he gets very frustrated and will say “I hate you Mommy!”  This is immediately followed by a confused expression as if he knows he didn’t mean that, and it will be followed by “I love you Mommy, I love you.”  I always answer the same way.  “I know Jim, but buddy we can’t do what you were doing…”  I try to explain the why and try to give him better phrases to use in response to that kind of situation.  It’s painstaking, but we have made progress.   So much of where we are is about giving him the tools to be able to function more smoothly in whatever environment whether it is home, school, church, etc.  There is a lot more to that than meets the eye, but big picture, I feel like we are getting the upper hand on autism.  The hard part is maintaining that upper hand as he gets older and more aware while the world around him becomes more complex and intricate.

One thing is clear; autism kids and their families need those around them to lend their support.  It makes a big difference not only for the child, but for the parents trying to navigate a really difficult, ever-changing journey.  You will probably never know what a difference you make to a kid just by giving a wave and giving them an opportunity to wave back, or giving a smile instead of a grimace when they are being a little more active than other kids.  You may not realize the subtle impact you have when you show understanding when they are just not feeling up to being particularly social on occasion, or show extra patience when they do not have the right words in a conversation.  When Jim was a toddler, my husband used to say, “Give me a big hug Jim!”  Jim would back into him because a real hug was not his favorite at all.  Over time, he would give a very brief half hug, and eventually, he would throw both arms around my husband’s shoulders and give a big squeeze with my husband giving step by step instructions.  He literally taught him how to give a big hug.  Whether it’s hugs or language, it’s about reaching them, and enabling them to reach back out to the world.  I encourage everyone that has a child with autism in their life and community to learn about ASD and help these kids and their families in any way you can.   Your awareness will spread to others, and it will help these kids grow into adults living in a more understanding and aware world.

I have not had a chance to write much over the last couple of months for a whole host of reasons, but the main one is that it has been difficult to write during this time.  In this season of Lent, I’ve got a confession to make.  The last couple of months have been pretty challenging.  Some of this is a typical 7-year old pushing the envelope type of behavior with an autism backdrop, but other stuff is lingering spectrum tendencies that I would give anything to see leave my son.

Having been through a phase like this before, I knew that we would reach another level in the maturity department, he would transition away from some of the behavior, some of the symptoms would calm down a bit and maybe even go away (a mom can hope), and there would be another period of time that felt more manageable.  I did not know when that would be, but I knew I was not in much of a place to write until we got there.

In the last week or so, we have seen a series of really great changes take place that have renewed my faith in the fight against autism and the miracle that is the human brain.  But before that began to happen, we had ourselves a full-on hunker-down-in-the- trenches kind of situation on our hands.  Our slide started after the New Year with staffing changes at school.  Staffing changes are just part of school, part of folks changing roles, but for students, it’s often accompanied by troubles adjusting.  It takes time for them to get settled with a teacher or assistant, and they get very unsettled when those folks have to take on new roles.  Right off the bat, I knew that was a trigger event.  Trigger events have collateral effects.  We have seen an uptick in sensory behaviors, emotional reactions, and defiance when they have occurred in the past, and this was no different.  It goes back to the ability for them to trust that person working with them, and when that person changes a role, they well, get mad about it.  The poor new person walks into a difficult situation and has to earn their trust.  It’s something that we have to work through over time.  New academic material accompanied the staffing changes, and along with that, a more intense homework and testing regimen.  Again, added frustration, added intensity, and a great recipe for a combustible situation.  Stir in a little surly 7-year old behavior and typical struggles, and you get a good idea of what the last few months have been like.

I write all of that not really to complain – all of the above is just part of parenting and part of kids growing up –  but really just to provide a realistic backdrop of what something as simple as a staffing change can do to a kid working so hard to overcome autism-related issues.  And for those parents reading this that have either been through it or haven’t gotten there yet, I hope it helps to know that we understand and when you go through it, that you know there’s a light at the end of the tunnel.  All the work and all the patience are worth it.

I could see glimpses of my buddy starting to turn for the better toward the end of January, but several more weeks would follow before we really saw any big changes for the better.  It started with his first ‘good’ day at school in quite a while.  He had gone through his day with almost zero issues of any sort, completed work independently, listened to directions, and seemed really relaxed once at home.   After reading the notes on the day, I poured on the praise and told him I was really proud of him for the good behavior.  He sat up a little taller and grinned.  We had a good weekend, and crossed our fingers on Monday that maybe good things would continue.  They did – he brought home some good grades, had another smooth day, and I got a call from his OT saying that since he had knocked out most all of his goals that the couple of things remaining could be done with at-home exercises.  After we talked, I just had to sit there for a second and take a breath.  OT had been part of our world in one way or another since mid-2015 with in-school sessions twice a week for the last year and half.  A ton of work on Jim’s part, his therapists’ part and ours, and now we were getting to mark it off the list, which meant more time in the classroom.  It was just the kind of good news that we all needed.  When I told Jim the news, he looked at me with a happy smile, and I could tell that he clearly understood that it meant his hard work was paying off.  More good days, more happy notes, and more good grades.  He came home the other day and decided he could do his homework on his own, and when Dad reviewed it, it was all correct.  Parent mind blown.  He turned around and told my husband, “when Mom gets home, she will be so happy with me!”  He was quite right!

I don’t know what clicked in his brain.  I don’t know if it was just the constant barrage of pressing him to make good decisions, the joint holding of the line by us and his teachers, symptoms easing up a bit, or if it was just that he decided it was time to do things a little differently and a little better.  I don’t know if it was two weeks ago in mass when I could tell he was starting to struggle but was really trying to hold it together to the end – I hugged him to me and asked God to please help him and bless him.  Whatever it was, I’ll take it.  It’s a little early to declare any type of major victory on this latest challenge, but I am optimistic about the new place where we find ourselves.   Mainly, I am excited for him.  It’s worth everything to see your child smile that big smile, stand a little taller, and realize something in himself that he didn’t know was there.   The progress seems to feed on itself.  I know we will plateau again, and I know there will be other setbacks.  All the same, the here and now is pretty cool.

It’s exciting because when you start out with all this, you have all these unknowns.  You try to tell yourself to take it a day at a time, and not to let yourself lose faith that things will progress and eventually be okay or manageable.   I watched a video from another autism mom circulating in the midst of our dilemma where she was clearly at a low point, clearly had hit a wall, and clearly had come to a realization that it was quite possible that things were not going to be okay for her son.  It was hard to watch, but as she relayed all the raw emotions and all that she had faced down over the course of their journey, my heart ached for her.  I knew exactly where she was, and I knew how terribly frustrating it can be to be in a tough spot and feel like nothing you were trying was working.  I knew how hard it was to believe so strongly in your child and to feel powerless against a condition that tries to take them from you.  I knew the fears she expressed.  I knew the beat-down frustration.  I knew the crushing sadness after a really bad day.  I felt a little guilty though, because I do not know (and I don’t want to know) what it feels like to get to a point where you don’t think it’s going to be okay one day.  I can’t imagine what it’s like to have to admit that to yourself as a parent.  I’m not sure I ever could if that was our situation.  I have had lots of conversations with other autism parents, and it is always striking to me how much in common we all have.  I’ve always tried to encourage people when I could that progress is progress no matter how incremental.  We have grinded out our journey painstakingly, and I will always give most all of the credit to Jim and his teachers/therapists.  He’s a strong-minded, strong-spirited, wicked smart, and super-loving child.  I have always felt like autism picked the wrong little dude in landing on him.   We still have a lot of work to do, but the trajectory is good.  One step forward, two steps back, three steps forward – it’s still progress.

 

Over the holidays, I have had a lot of conversations with fellow Autism parents, family and friends that prompted me to take up the topic of speaking of Autism.

It can be an awkward thing to approach a parent that has a child on the spectrum and engage them on any subject remotely related to kids, parenting, etc. Those that don’t have special needs as a part of their life can feel like they do not fully understand the other parent’s world. Their compassion will go unstated because they fear saying the wrong thing or offending the other parent somehow. Here’s the thing though:  I do not expect anyone asking me about our family or Jim to know the ins and outs of his case, his progress, or his prognosis. I do not expect people to understand every term that is part of the Autism vocabulary – and there’s a lot! I welcome people asking about Jim because I need them to support him and us as a family.  Kids on the spectrum, like most kids I suppose, are very perceptive and pick up on things like that.  They may not read some social cues correctly, but they can get a sense for someone’s disposition toward them – both positive and negative.   They may not know what to say in response when you politely smile and greet them, but they recognize you as a friendly person and are more likely to at least smile or say hello the next time around.

I reached a point a long time ago where I realized that Autism was a permanent part of our world – that can take some time to really sink in – and became determined to not only advocate as strongly as I could for Jim but for all the kids out there on the spectrum and those with other special needs.  I hope that some of my conversations with family and friends and other parents (and this blog) have helped foster understanding and support.  It can get tough some days, and it is really scary when they are babies and toddlers and there is so much unknown.  As they get older, maturity and progress give way to new challenges – the brain, after all, is always evolving.  I’ve had my share of sleepless nights, tears, and angst for future.  I want to encourage any parent reading this that is at a difficult spot with their journey to reach out to folks to talk about it, let people support you, look for resources to help, and understand that with the setbacks there will also be progress along the way.

We are in a bit of new territory as we have grown from toddlerhood into 1st grade.  All the kids have become more mature, more aware, and friends and family with kids around the same ages have in some cases been reluctant to address Autism with them.  When the kids are very young, I would agree that a conversation is not purposeful because they are truly too young to understand, but at older ages I cannot stress enough how important it is to foster knowledge and understanding about this condition with young kids.  I know there is reticence in some cases because no one wants to have a conversation that acknowledges differences, but we are all different.  It does not make us less.  That’s not just a tagline; it’s very true.  If folks do not have any knowledge about some of the things that come along with Autism, then they will completely misread a kid in a given situation.  It has damaging implications for all involved but especially the kid on the spectrum who may already be struggling with social interaction.

By not being armed with knowledge, the child learns that people who do things differently, react differently, or have difficulties are somehow less, deficient and weak.  They miss the opportunity to demonstrate compassion and being able to offer help and engage the child on the spectrum in a way that is beneficial to both kids, and even worse, they may just miss out on meeting their next great friend.  Those kids will someday grow into adults, and you don’t want them going out into the world with a fish bowl mentality.  It won’t be well-received, and it won’t serve them well.  Talking with your kids about Autism should not translate into a pity party for those affected.  Autism could happen to anyone, and each and every person impacted has their own specific case.  As the saying goes, “If you’ve met one person with Autism, you’ve met one person with Autism.”   As you learn about Autism Spectrum Disorder, you may look really closely at some of your own tendencies, and you may recognize some symptoms that perhaps have not manifested as strongly as those formally diagnosed on the spectrum (not kidding).

Many children struggle with different areas like reading or fine motor skills or attention span, or athletic ability.  Kids on the spectrum just have a list of things that inhibit them in certain areas of their own to the point that daily life is difficult for them.  The various therapies are about breaking that list down one by one.  Being a part of both the typical world and the autism world, I am quite comfortable blowing the lid off the idea that anyone’s child has zero issues of any sort.  Your ‘secret’ is safe with me.   So I implore parents in the typical realm to have a conversation about Autism with your child particularly if they routinely encounter children on the spectrum (i.e. school).  In our case, I think many of the kids at our school have some level of understanding, but I think that is because they have grown up around it from pre-K.  It’s just part of their world.  Even so, a top-level conversation about Autism would be good for these kids to arm them with a better understanding.

Every child has their set of gifts and kids on the spectrum are no different.  I’m not just looking for the silver lining.  I am truly wowed – like a lot of parents, I know – by all our kids on a near daily basis.  This parenting thing is hard work, but man, the steps and growth along the way with them are priceless.  Some people say, “You’re going to miss this.” in regards to all the craziness, and they are right.  I already look back a little wistfully at their younger years while embracing the excitement of the now.  Autism puts a special spin on it in that you learn to appreciate the intricacies of development that much more.  The understanding of feelings, the grasping of context, the addition of words and then the complexity of language, the expression of love and care like a simple hug, getting when something is really funny, the ability to relax in a chair for a few minutes, the ability to read, the understanding of how a math problem is calculated, and on and on and on.   All of these things are gifts to parents of kids on the spectrum that represent progress, but for me, this heightened recognition helps me to see it in both of my sons who are not on the spectrum.  In my oldest, I notice the more refined conversation style, the honing of the sense of humor, the absolutely exploding imagination (the stories y’all!), the effort to discover who he wants to be, and the deepening of his relationship with both me and his Dad.  In my youngest, I see more clearly the flashes of independence, the addition of words and language (receptive and expressive), the greater interaction with other people, the more interest in certain toys, the desire to sit down and color (What? A boy who wants to sit and color? There’s my artist!), and little specks of personality that are all his own.   If having Autism as a part of our lives has given me a gift, that’s it:  a special prism through which to see their many colors.   They are many, and they are bright!

Sitting in the waiting room of the therapist’s office waiting on the completion of a language evaluation, I can’t help but feel a bit like a veteran mom with all this. We are here for kind of a checkup, but it was roughly 5 years ago that we began our autism journey with just that, a speech/language evaluation.

As I’ve written about in prior posts, our symptoms came along very gradually and speech/language was our first and only indicator that there was anything amiss. Since then we have been on the therapy carousel, always trying to find the magic combination of therapies to take on the effects of autism. It’s an ever-changing mix of therapies that we tweak every six months or so. The brain is an amazing organ, and as Jim has matured, the growth and strides that he’s made have been nothing short of phenomenal, especially given where we started.  We are always vigilant for any extra tweaks or support we need to provide – hence, the language eval.

Finding the right mix requires a lot of thought and patience, and when you discover that a change is needed it can be a very taxing process to evaluate the needs, evaluate the providers, and ultimately determine a new direction. I have watched a number of families go through a change of approach, and it can be bittersweet, happy, scary, hopeful, exciting all rolled into one. Sometimes changes are needed because there has been progress. Sometimes it’s because that progress has stagnated. With every stride there is change. You get to know your therapists over time, and probably the biggest source of a strong bond is the fact that as a parent you feel like you have a teammate in the fight and someone who truly cares and advocates for your child. It can be a lonely walk day-to-day.  Parents lean on therapists for support and guidance, and over time, you come to be experts on your child from different angles. This is why having to make changes in schools or therapies can be tough stuff. But new directions can also be exciting as they have the potential to unlock progress. As I look around the waiting room, I see lots of parents all doing the same thing — trying to find that right mix, the right balance.  Some have that look of angst on their face that everyone has at the beginning of things or when things take an really unexpected turn with symptoms.  Others are in a better place, which is always nice to see.

Lately, we have gotten mostly good news, and it has brought us to a new place in this journey.  The greater maturity, academic confidence, and increased social engagement has been amazing over the last few months.  It’s a trajectory that is really encouraging, but now we are in a spot where I know we have to grind out progress and stay focused.  The holiday time always lends itself to greater reflection, and there is no doubt that I have been in that mode a lot over the last week or so.  The other night, as we were getting dinner together, Jim came into the kitchen, and we had a back and forth conversation that lasted a minute or two.  He ran out of the kitchen to go play, and I felt the tears well up.  My husband looked at me like “What is the matter?”   I could barely talk but managed, “Did you hear that? Just a normal spontaneous conversation.”   I have learned to be patient when it comes to spontaneous language, but I have longed to be able to share the same kind of talks that I have with my oldest son.  You really take language for granted until you do not have it.  We have fought tooth and nail for every word, phrase and context, and I am so proud of how far he has come in that regard.

I have not written much about Jim’s brothers, but they have been incredible from the start.  Older brother John has been remarkably resilient as we have had to give so much focus over the last several years to the autism diagnosis.  We make great efforts to balance out the attention, but he has exhibited a patience level that few 6-8 year old kids display.  He’s embraced his brother and any and all quirks that accompany autism with understanding.  There have been flashes of totally understandable frustration for sure, but there is a brotherly love there that is heartwarming.  I’ve told them for years how lucky they are to have each other.  He’s endured a school change this year, which has been a lot for him to handle, and for the most part, he’s rolled pretty well with it.   We have all had to make changes over the last several years, but that’s how it goes – that’s life.

When baby brother came along, Jim gradually came to identify with this new big brother role.  He adores his baby brother and dotes on him constantly.  Both boys provide something to Jim that is critical and crucial along with their brotherhood.   They provide constant social support and interaction.  Over the last year, the big boys have started truly playing together like brothers will do.  Wrestling each other, chasing each other, and cracking jokes to make each other laugh.  All of that is a fairly recent thing, but where some parents may put a lid on the inevitable chaos sooner – Kenneth and I typically let it go a bit longer.  It’s music to our ears.  Baby boy has also been wonderful.  He’s gotten super playful, so now he chases Jim around the house as he zooms around the house on the Mickey Mouse ride-on that he’s 40lbs too heavy for (hattip: Disney and durable plastic toys).  He’s taught Jim about emotions (Mommy, Michael likes to cry? No honey, that’s called separation anxiety, and you had it too), boundaries (hand to the face when he gets too close), and empathy (recognizing when baby is tired, sick, happy or sad).  Most of all, the boys give Jim the most important things that siblings can give to one another – love and acceptance.  It gets this mama every time.  It’s awesome to watch, and in our mix of therapies, it’s the one that is the easiest for Jim because it’s not work.  It’s just family.

I leave one last story from a birthday party that we attended over the weekend.  We love birthday party invitations because it gives Jim the opportunity to see his friends and classmates outside of school, and it gives him an opportunity to build friendships.  Contrary to what most people think about autistic kids, they actually can be quite social.   What stinks is when you have a child with symptoms that hamper their ability to be social, but they clearly like being around people and interacting.  Anyway, I was chatting with another parent while we watched a group of boys playing in the bounce house.  She was telling me something, and I got fixated watching the boys start playing tag sort of in and out of the bounce house.  I know she probably thought I was being rude at first until she saw what I was watching.  Jim was playing tag with two of the other boys – and doing pretty well too – the boy’s fast!  Totally legit game of tag, and he was smiling and laughing.  The other boys were just being sweet boys, and all of them were having a blast.    The mom caught my gaze and said, “oh yeah, they are playing tag.”  I said, “yeah I know, that’s really big for us.”  She totally got it, and I thought my heart was going to explode.  Through all the therapy appointments, strategizing, plain hard work, and worry for the future, these moments are what make you feel like you are on top of the world.   I was just so happy for him.

As Christmas approaches, we have much hope for 2018, and we are so thankful for the little gifts of progress we received in 2017.  I know that some people look back on a year and perhaps see more bad than good, but I hope that those who have had a tough 2017 can find some good that came out of the challenging circumstance.   I do hope that everyone has a wonderful Christmas with family and friends.  We are thankful to God for so many things this year, but we are most thankful for the gift of his Son, Jesus Christ.  With Christmas comes spreading the message of love, hope, and peace that is the story of Christmas.  So tag, you’re it!

The last ten years have brought about a ton of change for our family. Ten years ago, Kenneth and I relocated from Jackson, MS to Shreveport, LA to pursue an attractive job opportunity for him.  We did not have children yet, and everything seemed to make sense as we looked at this new phase of our lives.  To make a very long story really short, virtually nothing went according to plan.

We eventually made a big geographic circle by landing in Memphis, TN.   I now have the benefit of a lot of hindsight to evaluate all the sequence of events, but at the time, each and every event was a jolting and unsettling type of change.  I can now look back and see how it all made us stronger as a couple and forced us to dig deep within ourselves to find a good path for ourselves and our family.  The ride certainly wasn’t for the faint of heart.  NICU stays, unexpected job changes, financial stress, new business ventures, new family roles, an autism diagnosis, new therapists, new schools and another sweet baby – life has certainly not been dull.

I’ve written about our own roller coaster ride over the last few years, but more recently, I’ve watched family and friends face down terribly difficult circumstances that are the very definition of jolting change. They have endured cancer diagnoses, the loss of a spouse, the loss of a child, the loss of a parent, life-or-death medical procedures, and various other life events.  It’s the kind of stuff that brings you to your knees and leaves a scar on your soul.  It’s the kind of stuff that folks just would rather not talk about.  But it’s the talking about it that makes you feel supported and lets others know that you have their back. As terrible as some of those experiences are, I hope that those that have had to go through them have felt the warmth of others’ support and have experienced the grace that can come with that.

With change comes a whole lot of the unknown. It’s certainly true with an autism diagnosis as no one can know how a child will develop and change over time.  You read enough testimonials from autistic adults and their parents, and you quickly know that every story is different and no one should be counted out.   You still want to know, but part of you just accepts that you do not get to skip to the last chapter of the book – it doesn’t work that way.  So you embrace what you know, and you embrace what you’ve got in the here and now.   I have read stories of non-verbal autistic children that people thought could not comprehend the world around them only to find once they learned to type on a computer that they were there the whole time with so much to say. No one should get counted out.

Change is hard, and sometimes it’s not a jolt at all. Sometimes it’s what used to feel familiar and right and good just doesn’t anymore.  It can be hard to open yourself up to the idea of making a change because we get safe in the known.  I hated change when I was a kid, but it didn’t take too many life events before I realized that sometimes change can be good and it really can be better on the other side.  And if it’s not?  Well then, make another change.  It can be hard to admit to yourself that a past decision was just wrong. I try to remember that God is there throughout our lives and most especially during difficult times.  When viewed through that lens, it’s not necessarily easier, but the outlook is painted in a different light – one with a sense of purpose greater than ourselves.

I hope that for folks in the midst of a transition or change that they are able to open themselves up to the possibilities and silver lining to whatever set of circumstances lay before them.  I hope that those that have been through hell over the last year or so can find a place to take a breath and rest their soul.   Peace is a good thing, and when you find a peaceful place, the courage it took to get you there is empowering.  I’m wise enough now to know that I shouldn’t get too comfortable, and I am also well aware that I’m not driving.

Yesterday, we had a great annual fundraiser called Ride for the Angels at Cyclebar.  At one point, the instructor said, “think about why you are here, think about why you are riding.”  It was hard not to get emotional, and it felt really good to ride with a purpose – my sweet Jim but also our family.  I was thinking today about the progress we had made overall and how sometimes the strides can be so subtle that you almost miss them.  Some of the progress can be easily be taken for granted because you get so used to living with that particular fear or behavior that when it’s gone you almost miss the fact that it left because the work around just becomes a way of life.

Our initial challenge was language development, and I remember the speech therapist trying to get Jim to say “I want” and using a song-song tone of voice along with a hand motion.  We worked and worked for months to get that down and applied to daily life along with other two word phrases.  There was much incremental progress along the way that initially was just intended to help him communicate needs to us.  Eventually we went onto three word sentences and descriptive language.   It was easy to see as he got older and his skills developed how much the language element had inhibited his social engagement with peers.  Today he asks me questions and tells me things in complete sentences.  Our conversations are still very concrete, but I will take it.  He now initializes conversations: Mommy, where are you going?  Me: I am going to the store.  J: What do you have to get?  Me: Oh just a few things, it’s a short list. Do you want to come with me?  J: Yeah, I’ll get my shoes.

I know many parents will read that and say, what is the big deal?   Here’s the big deal: He engaged.  He asked a question without prompting and of his own volition. He replied appropriately on topic.  A normal exchange that I know many parents would not even think twice about, but to me, it’s gold.

One of the challenging things about the social element is that it is uncertain.  He does not know what someone will say back to him if he does decide to engage.  And what if he does not know what to say?  Like Jim, many children on the spectrum are social, but it is the unknown or unpredictable nature of social interaction that makes them avoid it.  Many times, they are comfortable playing alongside but not necessarily with other kids for that reason.   We keep working at it, and what I have found is that some kids are really understanding with it all, and that is such a help to him as it sews confidence.

I am so thankful for the progress we have made as I know that not everyone experiences that.  There can be upward momentum followed by long plateaus and then an explosion of progress.  If you are not a patient person before autism, you become one over time….the disorder beats you into submission in that regard.  I think back to when we could not run the vacuum because the noise would result in an instant meltdown.  We used to monitor where we would be at noon on Saturdays because that is when the tornado siren would go off.  That too would send him bolting inside with a truly fearful response.  Now, he either tolerates it or grabs his noise canceling headphones and hangs out.  He used to eat bananas all the time, and now he hates them (it’s a texture thing – he loves banana smoothies!) and hates for anyone else to have them too.  This one has gotten better – we have gone from not even being able to be in the room with them and very nearly being physically ill to tolerating them if someone else is eating them.  Out of nowhere there came a fear of commercials on the TV and/or the TV being off.  Neither my husband nor I have any clue why this is an issue.  He hasn’t been able to explain it as of yet.  I still just hate the fact that things like that cause him such angst.

We have all become accustomed to these types of things over the last few years, even big brother.  He has exhibited a patience with it all that is really special for such a young man.  He loves his little brother and tries to help when there is a round of anxiety about something.  He tries to talk it out with him when he can, and those conversations are really heartening to overhear.  It’s the building of understanding and trust between the two of them that is so very special.  The brotherly bond is strong, and it’s nice to see him care for his little brother and back him up when he needs support.  I can tell that Jim leans on the support as well.  It does my heart good to know that Jim will always have his brothers and that they will have him.  They are all gifts to each other even if they do not know it just yet.  I hope that as he grows older some of these things will fall away and not be an issue, and then again maybe there will be new things that will be bothersome.  We really do not know, but we will be there to love and support him whatever the case may be.

We all have things to overcome, and in that way, we all have something in common with kids on the spectrum.  Maybe its a fear of flying, a fear of large crowds, an awkward conversation style,  a lack of discipline with exercise or diet, a weird food aversion, a lower aptitude with math or reading, or something else.  There is almost always something for us to overcome, and the thing is…kids on the spectrum teach us every day that it is possible to do so.