I'm Not Driving

I have not been able to write much in the last couple of weeks partly because of our ridiculous schedules and partly because it has been accompanied by some ups and downs that had me a little scattered in my thoughts.  Overall, it has been a great last couple of weeks filled with fun activities and good family time.  The different routines on some of those days have been a challenge to navigate, but we managed okay.

I have had a number of conversations with parents over the last month or so that I wanted to touch on as it has driven home the importance of support and understanding among parents – both special needs and typical.  One commonality that I have found as I walked away from these conversations was the need on the part of the other parent for someone to just listen and understand their situation.  Put simply, you just want to talk to someone who ‘gets it’.  When we first started down this road, I remember weighing how to handle our evolving situation as we were figuring out what was going on with Jim.  As I have mentioned, we went into protect mode for about 4 months there, and that time was important as we all needed to take a breath and simplify.  As we got our hands around it all, we then had to re-join the world.  But how?

I tend to be a private person.  I know, the private person that starts a blog…that makes sense.  I was and still am very protective of all my kids, most especially Jim.  So deciding how to navigate the world around us while still being respectful of him and all that he grapples with day to day was not an easy decision.  I got to a point where I realized that we had to embrace the autism and all that came along with it.  Whatever symptoms we had to handle, we just had to own them and help him own them.  It was part of our world whether we all liked it or not, and frankly, whatever the world around us thought about it didn’t matter much either.  I chose to foster understanding in the community of friends and family around us, and ultimately, that’s why I wanted to start the blog.  In talking to parents of special needs kids, we all share in grappling with various conditions, symptoms, and their byproducts.  We all bear a concern for our children about their futures and where they will be in 5 years, 10 years and beyond.  In talking to parents of typical kids, they often have issues they are handling as well.  For some folks that means worrying about social anxiety, academic pressures, depression, and for some folks that means worrying about long-term care, financial security, and the independence of their children.  We all quickly have to pull ourselves back to a “one foot in front of the other” mentality because this is a day-to-day walk where success is measured in increments of months.  It’s important not to get bogged down in the day to day or in the longer-term possibilities.  I like to do a 3-6 month look back because whenever I do, it’s a lot easier to see the changes and the progress.

One thing I want to say to all parents but especially those of kids with any special needs is please find a support network and lean on them.  Whether it is close friends and family or new friends met through school programs, make sure you find folks that have an understanding of the challenges you and your child are facing.  Make sure that your child knows on whatever level they can process that they have the support and compassion of those people.  And know that not everyone will have a compassionate response, and there is not a lot that you can do about that except steer in another direction.  The hard truth that we have experienced is that not everyone will offer support or kindness, and some people do not care to learn about whatever is impacting your child.  There is an indifference in some people to which they are entitled I suppose, but when it’s your child, it can sting a little bit.

It’s been a good couple of weeks in the grand scheme of things.  We have had some fun times with a new little friend, which has been great and it has been fun to see my little guy so happy.  He has tried to join in more play with others, and that is a great step forward.  It’s a challenge, and when there is a negative experience, we often take a couple steps back.  One of my biggest fears has always been the potential for bullying, and we had one of our first instances last week.  Thankfully, it was not a physically aggressive sort of situation, but more like a mean game of keep away.  But the end game was the same, exclusion and singling him out as different.  That’s the part that hurt, and the fact that I was not there to protect him and stop it hurts too.  

I was thankful for the response of the school staff and the way the situation was addressed as those type of incidents left unchecked are bound to escalate.  I was bullied relentlessly growing up, and I know first hand how damaging it can be when it is dismissed and allowed to persist.  In my case, the bullying came from both kids and adults and started as far back as kindergarten.  The constant negative treatment by a whole host of people made me mistrustful of everyone, and it took a long time to distance myself from the effects.  I will not allow any of what I went through to happen to any of my children.  It is particularly cruel to me when bullying targets a kid with any type of special needs, and even more disappointing when the parent’s response is dismissive instead of responsive.  

What is heartening was that I was told about the situation by a classmate who went out of his way to get my attention at pickup and let me know what had happened.  I was blown away by the compassion shown by this young man and his genuine concern for my son.  I’m sure he has no idea how much it meant to this mom and to the little girl of years ago, but I sure could have used a few more classmates like him in my corner along the way.  I try to remind myself that there is plenty of compassion and understanding in the world, we just have to look for it and open ourselves to it.  

 

Every parent has the realization at some point after they have their children that they have created an actual human being. You know, that they have created a complex individual with feelings and preferences that may or may not resemble their own.  It’s really exciting and really frightening all at the same time.

Toddlers are notoriously unreasonable at times as they learn expectations, boundaries, and general rules of life, all as they develop their personalities and opinions.  Our kids pick up on lots of cues as they watch their parents, siblings, family, friends, and anyone else with whom they interact.  They learn important nuances like the difference between grumpy, angry, disappointed, and frustrated.  They learn the fine lines between happy, overjoyed, glad, and content.  When you really start to think about it, the list of feelings, expressive emotions, and dispositions of a human being is really long and complex.  So you can probably imagine how difficult it is when that part of your brain does not contemplate and organize the information on emotional states well.  Left unchecked, virtually every interaction that you have with someone else is interpreted (or misinterpreted, as it were) in a way that results in confusion and misunderstanding.

I had a tense discussion with a very close friend of mine when I was in college (if she happens to read this, she may even remember the exchange).  I cannot remember what we were arguing about exactly, but it was likely one of those stupid arguments you get into when you are in your 20s and convinced you know everything about the world.  Anyway, at one point in the argument, she said something along the lines of, “Well, that’s the way I feel.” My response was, “Well, I think you are being ridiculous, and you should not feel that way.”  What she said next stopped me in my tracks.  She said, “You have no right to say that.  My feelings are mine, and they are valid.  You do not get to tell me that they are wrong.”  That about did it for the argument for sure, but what she said really stuck with me over the years.  She was right; even if I did not understand or agree with how she was reacting to the situation, her feelings and reasons for her reaction were her own and valid in that sense.  It doesn’t mean she was right, or that I was right.  In that moment and in that discussion, her feelings were very intense and very real to her, and that in itself meant they deserved to be treated with validity.

I did not know it then, but this concept would come in handy when I had children.  I quickly found that when I treated my children’s feelings with some validation, we were able to navigate situations and issues much easier.  I know I can throw the parental trump card down (and I have), but I would rather have them grow up knowing that I understand that their joy or sadness or fear or anger (or whatever they are feeling) is very real for them in that moment.  It does not mean I agree with it or even understand the why of it in the moment, but when they feel heard and validated, it’s a much better conversation and generally a better outcome.  It has especially come in handy as I have tried to understand and help my son navigate the vagueness of emotions on the autism spectrum.  By their very nature, emotions, feelings and states of mind are abstract concepts, and it is often difficult for kids on the spectrum to grasp the abstract.  But even a kid on the spectrum knows when someone is trying to understand their feelings and reactions to an environment or a situation.  When someone is treating you with care and love, that is tangible and concrete – not abstract.  Kids on the spectrum get that.

I mentioned in an earlier post about the double-edged sword of progress and the fact that it can often be accompanied by new challenges.  An awesome step forward for us over the last year has been greater self-awareness and the development of self-concept. Now, every child develops this as they grow up, but with most kids it is a more gradual process that parents probably barely notice.  But with autism, some children may never really grasp that they are not engaging with the world around them, or even if they are aware, may be indifferent about doing so. A big goal is to help them engage more, and reach that part of the brain that seeks the social, feels empathy, and enables the child to connect to the world around them in a meaningful way.

With greater engagement comes new and more diverse stressors.  The progress has a flip-side in that as he is more aware and engaged, he is bombarded with all these new situations that are difficult to interpret, unpredictable, and uncertain.  So progress can really rock their world.  Kind of like just learning to read and someone hands you Plato’s Republic and says “knock yourself out” (Excuse me, I was stepping up to Dr. Seuss?).   Feelings are also abstract – you cannot see them – and everyone expresses them differently.

What’s more is that kids on the spectrum tend to internalize their emotions and because they have difficulty expressing how they are feeling, it can result in a meltdown out of the blue and sometimes hours removed from whatever was upsetting them.  Sometimes it is a specific interaction with someone, and other times it is event-driven where they have held it together for as long as they could before the stress of the environment overwhelms them.  I can tell you as a parent that has dealt with this on and off for the last five years it can be difficult to see it coming.  I have definitely gotten better at it over the years, but it’s tough to recognize in some circumstances.  The meltdowns are not necessarily like a temper tantrum, but more like an anxiety attack.  It can ramp up from general angst to sobbing to getting upset to the point of hyperventilation.  It can be scary and heartbreaking.  As I mentioned above, just giving his feelings an outlet and some validity can be a help, but it’s hard to see your child in such distress.

One piece of advice: If you see the stress building, punch out of the situation immediately.  Don’t try to stick it out, especially when they are really young.  A meltdown at age 3 or 4 ruined his whole day.  A meltdown nowadays may not ruin the whole day for him, but the after effects seem to linger for a couple of days.  We have had to leave weddings, birthday parties, and restaurants early and unexpectedly over the years, and it has always been a good decision, even when friends and family do not understand. We have opted not to attend large functions at church or school because it had been a hard day, and again, it always felt right doing the best thing for him.  Over time, we have gotten more nimble as a family, but that is always subject to change.  The complexity of emotions will continue to be a challenge over the years.   I know the most important one – love – is well understood, and for that I am truly grateful.

If I had to name the two things that are absolutely critical to navigating the spectrum, it would be the willingness to learn and an ability to manage relationships effectively.  This topic has been on my mind a lot lately as I have thought about where we started, where we have been, and where we are going with this journey.  

Most people discover their children’s autism in the early pre-K years where they may or may not have the teacher interaction, depending on when they decide to start their child in school.  So the first conversations are usually with therapists and physicians that are part of the discovery and diagnosis of the issues at hand.  

In the beginning, you are a little shell-shocked, confused, and unsure of what is going on and what it all means.  I work in the bond markets, and one of my first bosses gave me a great piece of advice about my career.  He said, “You have to be a student of the business.”  I have been in the markets for 18 years now, and I am still learning, getting better, and growing in my base of knowledge.  I’ll always be a student of the business.  

I treat parenting on the spectrum no differently – I am a student of the spectrum.  From the get-go, I set out to learn as much as I could about the kinds of symptoms we were experiencing with Jim.  As you know now, that list changed every few months. Welcome to the ASD crash course/roller coaster.  I asked lots of questions of our speech therapists, worked on things at home, and tried to give feedback to the therapists that I thought might be helpful.  I read.  First, I read about Sensory Processing Disorder, then about Autism.  Later we would add Occupational Therapists to the roster, and then an ABA therapist.  ABA is its own behemoth of a topic, but it’s also incredibly effective and worth the work to understand it. 

Through all of the appointments, conferences, and homework assignments (homework for me, not Jim), I was and still am a student.  I did a whole lot of listening.  I did a whole lot of asking questions.  And after that, I did a whole lot of watching and learning about my son.  You see, none of that knowledge and experience means anything if you do not meaningfully apply it to your child’s situation and your relationship with them.  You can list of symptoms, therapies, and disciplines all you want, but at the end of the day, you strive for the understanding so you can understand how to help them and build a better relationship with them. 

My business is about building relationships…relationships with my clients, my traders, my analysts, my assistant, my co-workers, and my management.  As a parent, I have to build relationships with my child’s therapists and teachers.  That process can be tough some days.  Therapists do not always have good news for you, and the good news can be tempered by new goals that will present new challenges.  The bad days are bad, and the good days are really good.  You share in both and move forward whatever kind of day it is.  

We are really lucky in that we have been blessed with some really awesome therapists along the way.  That does not mean that we have not had disagreements, tense discussions, etc.  Like any relationship, we have had those moments, but we grew from them.  One key distinction you should remember is that as the parent, you are the expert on your child.  Your therapist is the expert on treating your child’s condition.  They definitely get to know your child over time, and they can certainly become the expert on the child in their environment.  Here’s the part that is really important for achieving goals and success:  the experts have to work together.  It’s a symbiotic relationship.  Without a doubt, at least some of the progress we have notched has come from the exchange of information between us and our therapists.  I am in regular contact with our therapists, and they are in regular contact with me.  The effect is a holistic approach to our treatment plan.  We are all on the same page and working for the same goals.  If you do not conduct a regular dialogue with your therapists and/or teachers, I highly encourage you to do so.   

Recently, I raised my hand to say that I’d noticed an uptick in sensory behaviors at home, and we needed to retool what we were doing.  They were not seeing the exact same behaviors at school, but they had seen some behaviors that I felt like were in response to stressors (new school year, new teacher, new expectations, etc.).  I felt like it all was related, but we needed to change what we were doing to help him.  We exchanged feedback and ideas, and we started to see improvement. 

We have had mixed experiences on the teacher front.  I attribute it in part to a lack of training and education on Autism, ADHD, and other special needs.  The default in many schools seems to be to separate these students from the main classroom as opposed to having an inclusive model.  This is an issue for high functioning kids on the spectrum as they are in many cases capable of participating in the classroom, but need breaks or some assistance periodically.   The inclusion is beneficial in encouraging academic confidence, assimilation into the school community, and forming social relationships with their peers.  If they are segregated, they begin to perceive themselves as different, and that can also have detrimental effects academically and socially.   

I hope to see more training for the mainstream teachers so that hopefully they can feel more equipped to work effectively with their special needs students.  In the meantime, it’s an annual assessment process as a parent to determine how engaged the teacher will be.  At the end of the day, the buck stops with you the parent to make sure your child is getting everything he or she needs to excel to their full potential.   Communication is key, and as we continue to grow into the mainstream classroom, our teachers are and will be an even more critical part of our success. 

It can be like drinking from a firehose at first.  I have had plenty of moments where I just couldn’t think on it anymore.  With that said, our progress in the last few years is evidence  that an intensive, cooperative intervention works, and all the work is more than worth it.  

Sometimes parents have to learn to pivot, change their approach, and look at an issue through their child’s eyes.  I will never forget the day I brought Jim home after pulling him out of school with no idea of our next steps.  We had had a note or call everyday since the beginning of the school year, which had carried over from the spring semester.  We had had late night discussions with the principal, consultations with our occupational therapist, and he was becoming increasingly agitated, anxious and unhappy.  That day was the day I decided we had to take control.  The current setup was not tenable.  I had sat through several conferences over the last 8 months with folks telling me “he can’t, he won’t, and he’s not capable.”   I admit straight away that I was not receptive to what I was hearing.  I was not in denial, but I was hearing a lot of negativity without constructive solutions.  I believed in my son’s potential.  I saw a problem with our approach and understanding of what was going on with him.  Jim was not the problem.

When we got home, I sat down at the table with him, and I got out a workbook that had some practice sheets.  The house was quiet, and we went through one sheet after another for about 25 minutes straight.  So this child that I was told couldn’t sit still for even a minute, couldn’t focus, couldn’t get the concept, sat and worked with me completing worksheets for nearly half an hour.   When we were finished, I asked him, “Jim, does the noise in the classroom just bother you, is it too busy in there for you?”  He said, “Yeah.”  I asked him, “Jim, is it just too much, does it make you uncomfortable?” He looked straight at me and said with a big sigh, “Yes!” and slumped in the chair as if he was relieved.   It’s hard to convey the significance of that moment.  It had been really difficult over the course of that year to really connect with my son.  He had been drifting farther and farther away, and we were not able to have real back and forth conversations.  This language deficit was part of the Autism, and it made communicating with my child difficult at best.   So when he said that to me, there was a recognition that I understood how he was feeling, and his eyes lit up at the notion.  I didn’t know what we were going to do, but I knew he needed a break and we needed some time to figure out a new game plan.   We were in full on protect mode at that point.  It was a tough next couple of months.  He would script scenes from the past year every day, and every time he would do so the pangs of guilt for not having recognized the autism sooner, the frustration over not getting in for evaluations, and the lack of answers and guidance from those around us were powerful.

I have Monday morning quarterbacked myself to death looking back for signs and symptoms that I should have recognized as being on the spectrum.  I’ve looked back at pictures trying to pinpoint exactly when things may have started to change.  I had gotten a book on sensory processing disorder (SPD), but when I started reading it when he was 3 going on 4, the example stories described just didn’t fit what we were experiencing – the children’s cases described in the book were much more severe.  Literally six months later, I would re-read one of the stories and say, “Dear God, that’s us.”  Up until then, so many of the sensory behaviors we saw could easily be categorized as just a rambunctious toddler boy.  The meltdowns?  Maybe he’s just having a bad day.  The lack of play engagement? Parallel play is appropriate for 2 yr olds, and as he got older, well, he’s just a little shy.   In our case, ASD had been cruelly subtle in its progression.

I learned something very valuable during that time that has been hammered home constantly ever since – navigating the autism spectrum was going to demand more of me as a parent – it was going to demand everything I had to give and a lot that I didn’t even know was there.  There could be no phoning it in on any given day under any circumstances because the price of getting it wrong was/is just too great.  I have said many times that I just want to look back on this journey and say that we left it all on the field – no stone unturned.  Truth be told, that’s the way it is for all our kids.  I feel an obligation to put every bit as much effort into them and their needs as I do with Jim.  I try very hard to understand and validate their feelings day to day.  It can be challenging some days, but it’s often led to more constructive outcomes, a better understanding and a deeper connection with my children.

That day in our kitchen, Jim and I had our first real conversation in quite a while (of many to come) where he felt understood and advocated, and I like to think that maybe he also felt like he did not have to deal with all that was coming at him by himself.  Things had degraded so quickly that I think all of us were a little shell-shocked.  We took the opportunity in that low point to find faith and love in each other, and we turned to God as we did so and asked for his strength and guidance to find help for our son.  Over the next couple of months we would find enormous support, grace, and charity from all sorts of unexpected people and places as we aggressively sought out a viable way to get him the therapies he needed.   We were hopeful that maybe we could get him back to the classroom.  We had no idea the blessings that were around the corner.

I have been mulling over starting a blog for a while now.  After 5.5 years of navigating parenting on the autism spectrum I felt like maybe I had some perspective and insight to offer – particularly for new parents trying to figure out things on the front end.  We also have an older son who is not on the spectrum, and it’s been an interesting experience to be part of both the so-called ‘typical’ (whatever that means) world and the special needs world.  My hope is that special needs parents and typical parents alike will find an empathetic ear here, and to whatever extent I can offer support and insight to my readers, I will readily do so.

My husband and I have three boys – John (8), Jim (7), and Michael (1).  John and Jim are 14 months apart, and up until about 20 months old, Jim did not display any overt signs of autism.   When you read about ASD, there is a perception that the signs and symptoms of the spectrum will be obvious. For some families, it may work out that way, but for us and our sweet boy, the journey to deciphering a diagnosis and finding the proper treatments was an agonizingly slow, confusing and frustrating time.  Jim hit nearly every milestone as an infant, and up until about 18 months, we had no sign that there was anything amiss.  He made eye contact, he was verbal and picking up words, he walked on time, we had no feeding issues, no sleep issues, and he smiled big smiles.  We have so many pictures of him smiling into the camera with his big baby blue eyes.   You can imagine that this is an anxious time for us as Michael is now 16 months old.  Indications thus far are that he is not on the spectrum, but I would have said the same about Jim at the same age.

Somewhere between 18 months and 2 years of age, we began to notice a sharp drop off in new words and language development.  We began speech therapy soon thereafter, and I credit that decision with at least starting our fight against ASD although we did not know it at the time.   Over the next year, sensory processing symptoms (something we did not understand in that moment) began to emerge.  Something had definitely happened in his brain, and the changes were noticeable.  The auditory sensitivities and overall processing of his environment now made it difficult for him in most any situation other than his familiar home.  Where he had been able to function in a classroom, he could not.  He would get very anxious in loud restaurants, and he feared simple things that children are supposed to enjoy like going to a movie or birthday parties.  We couldn’t make it through a church service. Social interactions became increasingly difficult for him.  It was clear that the world was bombarding him, and all we could do was try to limit the impact as best we could.  We began to call around for evaluations where wait lists of 9 months to 1 year were common for full evaluations.  In the meantime, the situation degraded to the point where we had to pull him from school in the fall of his 4K year.

My happy, funny, sweet, smart child had been reduced to an anxious, agitated, sad, scared, and confused little boy. It felt like ASD was taking him one little bit at a time, and I was hanging on to him as tightly as I could.   Finding help for my son proved to be as frustrating as the situation itself.  The thing about autism is that no one can tell you exactly what is going on.  Most of the therapists you encounter know their discipline, but putting together the whole picture especially when you are managing a regressive situation is a challenge to say the least.  There’s a reason they use a puzzle piece as a symbol for autism.  It’s not easy to know what combination of therapies are best for your child.  I’ll address some of that in later posts.

We have come a long way in the last 2 years since we officially got our diagnosis, and I have met some wonderful therapists, teachers, and other families and children facing special needs challenges along the way.  This blog is really for them.  I want everyone to know how amazing these kids on the spectrum are and the incredible gifts they possess and all  they give to the world around them.  I want folks to know how hard kids on the spectrum work on a daily basis to accomplish things that come so easily for the rest of us.  They display an intellect and a tenacity that is impossible to miss.  I want parents to know that they are not alone in their journey.  I want families that encounter special needs kids and especially kids on the autism spectrum to know how critically important they are to helping these kids rediscover and navigate the world around them.  Without that engagement, they cannot take on the effects of  ASD.  We fight to pull them out of that hole and give them tools to overcome the things that inhibit them from enjoying daily life.

I am passionate about this cause because the proper early intervention can turn around a situation that feels hopeless, and in some cases, it can make a parent that feels like they have lost their child feel as though they have gotten their child back.  But more importantly, these children will someday grow into adults, and proactively combatting the effects of ASD is about giving them their lives back.  I picture Jim as a grown man, and I wonder what life will look like for him.  I know that’s an image only God knows, but I am hopeful.  Something tells me that with his sharp intellect, wit, tenacity and kind heart he will get there, and my hope is that ASD doesn’t stand a chance against him.