Saying goodbye (for now)……..

 

When I started this blog a few years ago it was with one simple thought in mind – I needed an outlet  to express the myriad of emotions I was experiencing as a mom to a young child diagnosed with autism.  Writing has always been cathartic for me and I have been able to work out my own emotions, struggles and experiences for myself by putting pen to paper.  Writing about our experience, our struggles, our wins, our highs and lows has proved beneficial for me personally and based on comments from some of you, it provided some understanding of what our world entails.  It has become increasingly more difficult for me to continue writing about our journey.  For a while I thought it was because I did not want to talk about the hard stuff, the bad days, the struggles, the frustration or to shed a negative light on how autism can impact our family.  Then I told myself I simply did not have the time to dedicate to writing with everything else I was responsible for handling.  When I started getting work published for a site that is geared towards parents of special needs children it finally helped me realize why I was struggling to keep up with this blog; the truth is that the goal of why I started Atypical Endeavor has run it’s course.  I shared our story  providing insight and education about autism and sensory processing disorder,  what it is like for us as parents, how my son experiences things differently and more.  Writing here has enabled me to sort out my own feelings as a mom while connecting with other parents who face similar challenges.  I no longer need to share this part of our journey for one simple reason – there is no longer a question hovering in the air – there is no more wondering if my child will receive a diagnosis – it simply is what it is and I have accepted it.

I read a lot about acceptance versus awareness in regards to Autism.  Awareness is good but acceptance is the true goal.  The definition of acceptance is this:  the action or process of being received as adequate or suitable. In reading that definition it struck me that I no longer need to spread my message here because I have finally come to a place of acceptance.  If the entire purpose of this blog was to work out my own feelings than I have succeeded.   This is our normal and we are okay with it. We don’t always like it, we have many bad days, we are frustrated a lot with the system, the process, the lack of support, the doctors, the schools, etc. but I have other outlets and support groups in place for those topics.  I belong to quite a few parent groups both locally and globally and these other parents provide so much information, guidance, advice and support because they have been where we are, they are going through the exact same things every day and it’s a tremendous resource.

I will continue to write about autism on other sites and blogs in an effort to share our experience or to educate people.  I will continue to fight for my own son every single day as needed whether that be for school accommodations, inclusion in social events or programs, access to therapies or doctors, or anything else that comes our way.  We will do this as a family because it is what is needed.  We will share our story with parents of a newly diagnosed child not to scare them or intimidate them but to let them know they are not alone, they have support, there are others who can point you in the right direction.  For anyone who wants information, wants to hear about how my son is doing, wants to know about a new study they saw on the news, what types of therapies we are doing these days or anything else about our lives, just go ahead and ask me.  I am a bit of an open book when it comes to this topic and am oddly thrilled when someone engages me in a conversation about it.

But here is the biggest lesson I have learned by finally getting to a point of acceptance.

Autism is a part of who my child is but it is not everything he is.  Being an autism mom is a part of who I am but it is not everything I am.  It is nearly impossible to avoid becomming consumed with being an autism parent due to the amount of research, work and time that is required to navigate the system. I assume this is true for most parents of a special needs child especially in the first few years.  Regardless of their need, it is our job as their parents to learn as much as we can and to provide whatever support we can to ensure our children thrive.  This reality is not changing for us any time soon.  Yet, I am slowly coming out of the haze and realizing that being an autism mom cannot be all that I am, just a part of who I am.  Just like being a working mom or stay at home mom should not define us fully, it can often times feel that these labels take on a life of their own.  For me, my career was such a big part of who I was that leaving my role almost 3 years ago was staggering.  Now after those few years and coming out of my autism mom haze (sort of), I am taking a certification program to become a coach, trainer and speaker in the field of leadership and self-development which are areas that I have been passionate about for many years.  I am considering starting my own business in this field, integrating this into my former career somehow or forging a new path entirely.  I don’t have all of the answers yet but remembering that there is more to me and more to our family than autism is a good first step. if nothing else, taking these courses will benefit me personally and teach me important skills I hope to share with my children.    The needs of my family will continue to take precedence and I am well aware that with my older son Charlie, things will come up, we will be blindsided at times, there will be new challenges to take on and during those times maybe being an autism mom will be everything I am for that week, month or year if needed.   Simply learning to accept that fact and knowing that “this too shall pass” is akin to giving myself a permission slip to go back to the business of living life outside the bubble again. Recognizing that I can control quite a bit but I am powerless to control every single thing that happens is a relief.  I do not regret the time I have spent writing here or the time I have spent and will continue to spend learning as much as I can in order to help my son be his best yet I am excited to change focus and let myself and our family loosen the reigns even just a bit; Charlie will be better for it and we will all be better versions of ourselves as a result.

To those of you who have supported this blog, my writing and our stories over the last few years I want to sincerely thank you.  Some of your notes and words have touched me more than you will ever know.  For those friends I have met through this blog, I am grateful beyond words to have found you as you are my tribe in this journey.  I will never stop writing, I guess at my core I have always been a writer.  I plan to write as much as I can and hopefully some day soon will start a new site/blog that encompasses something entirely different.  If nothing else, these last few years have certainly taught me that I cannot control everything, that sometimes life throws a lot at you, that we always have the opportunity to start over, try something new, change direction and will do this many times over during our lifetimes if we are lucky.  It may take longer for me to reach my goals than it would have before autism entered my world which may be frustrating for my type A persona.  But as one of my favorite quotes states “In an autism household no milestone is taken for granted and no achievement goes uncelebrated” which sounds like a pretty great way to celebrate my own journey as well.

 

 

 

How Glennon Doyle Melton made me love my tattoo……..

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Who hasn’t done something they regretted when they were younger? We all make stupid mistakes and bad decisions especially during those years where we are finally free to be on our own but have little to no idea who we really are.  For me, well, I got a tattoo, a very silly tattoo that I didn’t even really want and while I though I was being smart about picking an obscure place to ink my body, it never occurred to me that there would be a name for that locale that would make matters even worse (think – tramp stamp).   But recently, my view of this “mistake” has been significantly changed and I owe that shift to an inspiring memoir called “Love Warrior” written by Glennon Doyle Melton.

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Betraying what I know…..

griefWriting has not been a focus for me these last few months.  I could list all of the reasons as to why I have not been writing including a busy schedule, the kids, vacations, etc. but the truth is sometimes I believe that I do not have much to say or at least nothing to say that would be of interest to most people.  I doubt that people want to hear about some of our day to day struggles, question if people could begin to understand what a real “win” feels like in our home and mostly wonder if perhaps it would be better and more comfortable for everyone if I simply pretended that life is perfect, there are no major challenges or difficulties and that we are all just fine. The words do not seem to flow when my mind is focusing on these types of thoughts. Sometimes, however, out of nowhere something will happen that I simply cannot let go and therefore am almost forced to write in order to make sure that I don’t forget about this experience, this feeling or this moment….so here it is.   Last weekend the way that I handled a particular situation has been weighing on my mind and deep down I know why – it is because I betrayed what I know.  I did not stand true to how I feel and it has left me feeling sad, guilty and most of all fake in how I chose to show up. (more…)

A Thank You Letter to Our Teachers…..

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Teachers, in my opinion, are some of the most dedicated and hardworking individuals around.   As a parent of a special needs child I need the teachers, special education providers and therapists that we work with to know that I simply could not do it without you.  We are a team (and those words have been said to me by the teachers and case managers) and when it comes to providing the best education and guidance to help my son grow and learn, having my team has made all the difference.

As the school year is coming to a close, we are in the midst of finalizing IEPs, setting goals for next year, navigating the therapy schedule for the summer and next year and my child is just one of the many that my team is doing this for in these last few weeks.  Each and every one of you works extremely hard and much more than society gives you credit for and it is safe to assume as a teacher or educator you have heard many times how wonderful your schedule must be, how nice it is to finish work at 3:30pm each day and of course the fact that some of you have your summers off.  These assumptions could not be further from the truth.  You get up and go to work earlier than most people and finish projects, grading papers, writing out reports or planning for your classroom during your evening hours or weekends. You spend much of your hard-earned income on additional supplies and tools to engage your students.  You may have the summer off but you are rarely able to take time off during the school year outside of holidays and rarely get more than a 30 minute break during each work day.  Teachers do not have two hour client lunches or negotiate deals while spending the day on the golf course or enjoying cocktails. There probably are no 10 minute breaks to chat with your coworkers and catch up on the latest TV shows or sports game.  You are taking care of children during your working hours and as someone who is a mom to two young boys,  I can imagine this means your days are non-stop and you cannot simply close your office door and tune out your coworkers like so many of us can.

It seems impossible to thank you for every little thing that is done, for every accomplishment you have made possible, for the endless hours of patience and understanding you demonstrate and for the simple yet amazing fact that you have dedicated yourself to this profession.   Without my sons teachers, case manager, therapy team and all of those who provide support and guidance to our family, we would not only be lost but would never have had the profound experience of witnessing what true dedication to one’s field looks like.

Attempting to list all of the reasons why I am thanking you would be impossible because I realize I do not know about half of the things you are doing behind the scenes on behalf of my child or our family.  What I can do is tell you how much it means to me to have you in Charlie’s life, how much you have positively impacted both Charlie and our family and why it matters so much to me as his mom.

In no particular order, here are 10 reasons why I thank you:

1. For the fact that you celebrate Charlie’s milestones as if he was your own child.  No one in my life (outside of my husband and our parents) may ever understand the struggle that we face with reaching milestones and the heartbreak that often comes when your child does not reach milestones like other children do.  We celebrate even the smallest wins as if we’ve hit the lottery and the best part of working with our team of teachers and therapists is that they celebrate just as proudly and loudly along with us.

2. You are some of the only people in my life who I can laugh with about the ridiculousness or insanity that comes along with being a special needs parent.  You get it, you have seen it all, you don’t judge it or dislike it but rather you embrace it, you enjoy it and you laugh at our stories or you tell me about your own stories with Charlie with a huge smile on your face.   This team – these teachers, they know all about our code names, imaginary friends, odd quirks, incentive and reward systems and go along with it no matter how weird it may seem.  They know who PIA and MYA are (I won’t go into these in detail) which for our team is enough said.

3. You take your time to truly understand Charlie.  Not in a textbook way, not in a this is his “label” way but rather in a “who is this child and how can I connect with him way”.  This is at the core of what makes each of you indispensable to me.  One of the true joys of having a team as a special needs parent is realizing that these individuals really “get your child.”

4.  No amount of shoe throwing, meltdowns, screaming, diaper changing, potty training, space invading activity throws you off course.  You keep on keeping on and in most cases do it with a smile and a laugh.  You are not judging my child, you are not judging me, you are not throwing up your hands and throwing in the towel.  You are working each and every day to help Charlie be his best and like a parent, giving up on him is not an option to you.

5.  You remind me almost daily that Charlie is not his diagnosis.  You have told me in person, on the phone and in emails time and again how smart Charlie is, how wonderful he is, how funny he is and how much he is growing and learning.  You – his teachers and therapists give me hope and confidence every single day.  I know how awesome my son is but I still worry and fear for his future and while this may never go away, my team has allowed me to have faith and to acknowledge how far we have come.

6.  You decorate a weighted vest with paw patrol stickers in hopes it will entice Charlie to actually put it on for a therapy session.  You willingly sit in a blow up boat in my basement in order to engage Charlie’s love of imaginary play.  You make up a new game in speech therapy when a piece from your old board game goes missing because it makes Charlie happy and excited.  You take the time to email me when he has a really good day or has done something new or accomplished something challenging.  You reach out to me when you don’t understand something he is talking about or referring to because you want to know, you want to understand and you want to connect with Charlie. You develop social stories based on space and rocket ships to assist with potty training.  You put up a tent in the classroom so he has a space to be alone or calm down if needed.  You do all of these things for my son.

7. The countless hours you spend in meetings with me, the evaluations that are done, the never-ending progress reports and paperwork, the goal setting and the emails you answer from me with questions about even the littlest change or concern.   You respond to me at 7AM, at 2PM and sometimes at 12AM. All of these may seem to go unnoticed but we do notice, we are aware and we are appreciative.

8. The other team players who I may not even know or have never spoken to yet I am aware they work with my son and most likely deal with some challenges as a result.  To those individuals I thank you for including my child in activities like art, music and gym and for embracing the inclusion model.  When Charlie’s gym teacher (who I met just last week) told me that “in his eyes Charlie could do no wrong, just look at that face” I almost cried with pride for my son but was also humbled that this man saw what I see in my child.

9. For your endless patience not only with Charlie but with me. I can be exhausting in my never ending quest to do everything possible to help him.  I email you at midnight,  I talk your ear off when I drop him for therapy,  I ask questions 2-3 times just to make sure I am understanding the response and you never make me feel like a bother.  I don’t care if you think I am annoying, I do care about the fact that I rarely ever feel that I am asking too much.

10. As parents, we all love our children fiercely but as a special needs parent it can be almost impossible to trust that those who are caring for your child are seeing him for who he really is.  My absolute awe and admiration for our team is due to the fact that I can see, feel and experience the love they have for my child.  You expect teachers to like kids, but I never expected for my sons teachers and therapists to enjoy Charlie the way that they do.  Their eyes light up, they laugh out loud and they make me feel like the luckiest mom in the world as a result.

As we all head into summer I hope that you, our team,  are able to find time to relax, vacation, spend time with your own families and get a break.  You have earned it and you deserve it.   Thank you for being who you are and doing what you do.  I do not know what prompted you to enter into the field of education or therapy or in particular why you chose to work with children with special needs but I for one am grateful that you did.

Why I “Fake It” as a Special Needs Parent….

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Many of us have heard the phrase “”Fake it till you Make it.”   This type of mentality can apply to  so many areas of our lives and I have personally experienced the benefits of “acting as if” in order to reach the next level of whatever it is I may be pursuing.  There are, however, areas of our lives in which “faking it” can leave us feeling isolated, alone, unheard and misunderstood.  Parenting and all that it entails is a great example of one area where so many people pretend that things are perfect, act as if they enjoy every single second, feel embarrassed or ashamed to admit just how difficult some days can be, how much they don’t know, and all the ways in which they believe they have failed.  It is refreshing to see so many articles and blogs in recent years that tell parents (and moms in particular) that we are all in this together, that it is okay to have a bad day, that we are doing our very best and that we are not alone in this journey of parenthood.  We are now being encouraged to share the truth about how tired we are, how difficult it is to be a parent, the specific challenges both moms and dads face today and there is definitely a movement towards honesty and openness when it comes to sharing with other parents.  No more “faking it” or trying to look like we have this all under control – instead let us all unite over our shared experience.  Sounds great, doesn’t it?  But here is the thing, when it comes to special needs parents, as much as we would love to put it all out there with brutal honesty, most of us continue to “fake it” and here are the reasons why.

  1. Special needs parents know that while you may try to understand our situation it is not something that resonates with parents who do not face those same struggles.  We can talk and talk and try to explain it all but the realization that we may not be understood hurts so we keep things to ourselves sometimes and “fake it.”
  2. We don’t always want to be the whiner or complainer about how hard some things are so we would rather just tell you about the successes and wins. No one wants to hear negative comments all day so we pretend or don’t mention the bad stuff because if we only did that we fear no one may ever pick up the phone again when we call.
  3. We fake it every time we nod our head in understanding about the world of youth sports, drama of your kid getting on the right team, overbearing parents and coaches, etc.  We have absolutely no idea what this world looks like but pretend like we have a clue.
  4. All of those holiday traditions like train rides with Santa, Easter egg hunts, 4th of July fireworks, yeah we pretty much fake those too.  Sometimes we go, sometimes we don’t, most of the time we are  pretending like we are not filled with anxiety about what may happen if we do try to be part of these events and then we really have to fake our love of all the Facebook pictures showing your kids having a blast doing them.
  5. It’s easier to pretend like our lives our similar to everyone else’s.  There is nothing like the silence that enters a conversation with a group of friends when you casually mention that your child isn’t potty trained, that the hole in your bedroom wall was the result of a meltdown one day, that we let our kid eat dinner in his playroom to remind us that our reality is different. We may “fake it” to avoid judgement about our parenting or simply because we don’t want to bring up how different our day to day life may be.
  6. We don’t want to make you feel uncomfortable.  We fake it by not mentioning the 5 meetings this week alone with the therapists, advocate or child study team. We fake it by not mentioning the seminar on feeding issues or the hours spent on the phone trying to schedule various doctors appointments.  Not only do we fear this is a totally boring topic for you but we also don’t want to make others feel uncomfortable  by what our world sometimes entails.
  7. We don’t want you to stop complimenting our child or how far they have come. When you tell us our kid seem like other kids, are doing great and you would never know he has autism, we feel proud and agree.  But we also want to tell you that the reasons for this are due to 25+ hours a week of therapy, or the intense meltdown that occurred earlier today or a myriad of other things. Saying these things would be rude, unappreciative and make us seem like we cannot see the good in our child, so we smile, say thank you and go on our way.
  8. We feel like crappy parents for dreading holiday school breaks, summer breaks, etc. While most people are planning vacations or are excited about all that family time, we are trying to figure out what we are going to do with our child for an entire week of no schedules, no therapy sessions, no structure and the ensuing meltdowns that go along with these things.  But, we fake it anyways….because saying it out loud sounds terrible.
  9. Sometimes we “fake it” just to avoid our reality.  Smiling and pretending like things are totally normal, like everyone else has to see 4 different doctors a month, like attending IEP meetings and fighting for services every step of the way are just part of every parents daily life is our way of feeling like we are part of the regular world. We fully realize this is not the case but sometimes it is easier for us to not focus on the differences and just pretend like our world is the same as yours.
  10. Because if we don’t “fake it” we may come undone.  It’s not that special needs parents ignore or deny the facts but we choose to do so in private or with our children’s therapists or in support groups or with friends who we have developed solely based on the fact that they are on the same journey.  Sometimes faking it with the rest of the world allows us to get through the day and the thought of sharing all of the details of our situation is simply too emotionally draining – so we “fake it” to help us keep it together (otherwise we could be bursting into tears at any given moment with the check out person at Target).

If you have ever wondered about that special needs parent you know and love and felt like they were “faking it” with you please know that we don’t do this because we don’t trust you.  In a way, it is our armor, our protection against the possibility of feeling even more alone or isolated and in many cases it is the only way we know to survive.  “Faking it” is tiring and exhausting and most special needs parents would love nothing more than to be able to just put it all out there for the world to see without fear of judgement.  It would be great for everyone if we could stop feeling as we need to pretend or “fake it” in order to to allow ourselves and those who love us to be part of what is a challenging but unbelievably fulfilling journey because the problem with always “faking it” as a special needs parents is that we miss out on the opportunity to share all of the amazing, humbling, exciting things that happen in our lives because of our children (and these happen every day too). I hope we can work together to make this a reality some day soon.

It’s a Shame…..

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In former posts, I have mentioned that I am an avid reader and fan of Brene Brown and her writings and lessons have had a profound impact on me personally.  I often re-read her books and for the last 6 months have been listening to many audio versions while driving in the car to pass the time.  Recently Brene Brown started offering courses (she previously had course offerings for mental health professionals) to the general public and I am currently taking a course through her program Courage Works.  It has been an interesting experience for me personally because while I have become a student of her teachings via the written word and audio-books, the process of taking her course has forced me to actually think about and write down answers to questions and to actually do the work as opposed to simply taking in the information.   Her course is an emotional roller-coaster that leaves me feeling a range of emotions and causes me to stop, think, question, pause, wonder, and in some cases shut down my computer because of the sometimes overwhelming nature of the topics we explore and discuss.   A major driving force of Brene Browns work is rooted in shame.  The topic no one wants to talk about, the subject no one wants to address and the root of so much pain, fear and unhappiness.  No matter how much I read, how many times I listen or now through the work involved in this course, understanding and dissecting what triggers shame for each of us personally is a grueling and emotionally exhaustive endeavor.   I don’t have it figured out, not even close.  Yet through this work, it has hit me (like a sledgehammer to the head and heart) that while I may not be able to remedy areas of shame for myself as quickly as I would like, I have the ability to focus my efforts on eliminating shame and the side effects that go along with shaming for my own children.

There is a big difference between shame and guilt (as I have learned recently) and while parents or caregivers can utilize shame to change a childs behavior we may crush who they are in the process.   This is especially poignant for me as a special needs parent.  In the autism community, much of the focus is spent on trying to change behavior, trying to generate  typical behaviors, teaching our children how to be “normal” and to eliminate undesirable or uncommon behaviors and actions.   While much of the therapy we have implemented has been extremely helpful and beneficial, there are times that  I question whether or not Charlie feels on some level that he is being forced to fit into a box that is just too small for him.  Perhaps he is very aware that the “world out there” does not think his behaviors are acceptable and while as his mother I recognize that there are absolutes we must teach him and work on in order to ensure his safety, respect of individuals, right vs. wrong, it is a personal struggle for me to guide him in these ways while ensuring I am in no way making him ashamed of who he is as a person.  As defined by Brene Brown in Daring Greatly,  SHAME IS THE INTENSELY PAINFUL FEELING OR EXPERIENCE OF BELIEVING THAT WE ARE FLAWED AND THEREFORE UNWORTHY OF LOVE AND BELONGING.   Most people (after reading that definition) would do their best to avoid inflicting that emotion or feeling on anyone, especially their own children.

So in an effort to take what I am learning in this course and apply it in my everyday life, I will focus on my kids.  In all honesty, I am not quite ready to focus on myself just yet and that’s okay.  So boys, this one’s for you. Here is what I want you to know from your Mom who has chosen the Arena of Parenthood as my first mountain to climb……..

  1. I am okay with your “neurotypical” behaviors and will not make you feel ashamed or misunderstood because of these behaviors.
  2. I will work alongside your teachers and therapists to help you adjust some of your reactions or emotions but only to the extent it will help you grow and learn and not to stifle your own feelings and emotions simply because I may not “get it.”
  3. No diagnosis will ever define who you are or who you will be as a person. Be proud of your own unique personality and quality, own it and tell your own story.
  4. Our world can be disapproving and judgmental at times – as your mom I will do my very best not to be.  You can be you with me and I will join you where you are.
  5. I will stop asking how I can change your behavior, change who you are and change why you act certain ways. I will start focusing on how I can improve our relationship, our connection and how I can help you.
  6.  I will not shame you into changing or behaving in a certain way. I will teach you, guide you and make you aware of how your behaviors impact those around you.
  7. You are not flawed. You are amazing and inspiring every single day.  You are trying every single day which is a major accomplishment.
  8. Just because I think you are great and will not shame you into behaving in certain ways, does not mean you can do anything you want.   Guilt about how you behave is okay and will come at times as I parent you, but guilt is about your behaviors not about you as a person.
  9. Never forget how authentic you are today as a child. You show up every day and have no fear in letting your true self be seen.
  10. Being vulnerable is okay. Asking for help is okay.  Keep trying, keep putting yourself out  and there keep being seen.  Never worry about the critics who are not in your arena.

 

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Happy Groundhog Day……

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Most people have seen (many times over) the classic Bill Murray movie Groundhog Day in which the main character, a weatherman, repeats the same day over and over again. It’s a comedy film but one that at the end of the day makes us laugh, makes us sad, makes us think and tells a story of the power of love, the value of second chances and perhaps the meaning of life. As a fan of the movie I have found myself on more than one occasion making a sarcastic comment about how I feel like my life is Groundhog Day…..the same thing over and over, day after day and that outlook can definitely lead to feeling as if you are losing your mind. While I realize that my days are certainly not identical it can be easy to slip into an existence of routine and structure that starts to feel as if we are on auto-pilot. Having a child with autism creates a need for structure and routine that exceed those that may be required of all kids or adults. It is important that Charlie has an understanding of what to expect each day and oftentimes the slightest change or disruption to our schedules can be cause for a major meltdown. Due to this, we as a family have become almost too rigid in regards to our routine and for me personally it is stifling to constantly feel as if I must do the exact same things in the exact same order every single day in order to avoid or eliminate the possibility of a meltdown. I have always been the type of person who thrived on new experiences, new adventures and new challenges which is why this fixation on sameness has been even more difficult for me. (more…)

“It’s not you…..it’s me”

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Countless romantic comedies, books and stories have included the famous line – “It’s not you, it’s me.” We all seem to know this statement isn’t true but rather the nice way to let someone down or to end a relationship without blaming the other person. No one wants to say – “hey baby listen I am just not into you or I met someone else or you are simply not what I am looking for.” These lines have become a punchline in TV shows and movies and let’s face it we have all probably been on the receiving end of something similar at some point in our lives. But here is the thing…….I can honestly tell you without a shred of sarcasm or irony that it really isn’t you…..it’s me.

As a parent of a child with special needs there exists a good amount of denial about the realities of our lives. I work hard to face facts, to accept what is and to focus on the positive while continuing to learn about the ways in which I can help my son grow and learn. Autism is not something to be cured – there is no cure. We focus instead on providing the support, therapies and guidance to allow Charlie to be his best self and to integrate his unique traits and challenges into our everyday lives. While I have come to accept his diagnosis and all that comes along with it, one area that I struggle to come to terms with is the fact that my life is not and may never be the same again. I have always been an extremely social person – I love meeting people, making new friends, spending time with my old friends and family and making plans to get out and have fun with all those people in my life. We all realize that life is busy with careers, children, activities, family obligations and more and it is hard to find time to socialize as much as we may like. For me, this has been challenging. I make plans to go out with girlfriends and cancel last-minute, I am excited for my coffee date with a high school friend who consistently makes the effort to get together with me and I cancel (over and over again). I started working with a life coach to help me focus on setting goals for my own personal and business growth yet wind up canceling our weekly sessions 4 times over 6 weeks. I finally find a trainer who can work out with me at the exact time and location I am looking for while I am usually sitting in my car waiting for Charlie to be done therapy….and you guessed it…..I have to cancel more often than not. See I told you -“It’s not you….it’s me.”

At night, when the house is quiet and I am alone with my thoughts I beat myself up for all of the canceled dates, coaching sessions, training sessions and more. I think about the inspirational sayings I see posted on Facebook that all have the same message – YOU CHOOSE YOUR PRIORITIES, STOP MAKING EXCUSES AND MAKE IT HAPPEN, YOU CAN FIND THE TIME IF IT’S IMPORTANT TO YOU. I think about how I used to be – the career driven woman, the social butterfly, the person who spent time setting specific goals and reaching them because I had the discipline, drive and focus to make things happen. That person seems long gone these days and I often wonder what happened to me in that even the simplest commitment seems challenging to maintain. I wonder what it must be like for my girlfriends – the ones who have been in my life for more years that I can count who are always calling, asking to get together, trying to make plans, asking about a girls weekend away. I wonder what it must be like for my family who want us to visit for a weekend, or take a vacation this summer or ask if they can come help me with the kids. I wonder if my coach or trainer have chalked me up as someone who really doesn’t want to work on making my life better by improving myself and instead chooses to simply make excuses. These thoughts run through my head all of the time because I want them (all of them) to know it is not you….it’s me.

So this post is for you….for all of you who call and leave messages that I never respond to. For the professionals who make time in their schedule to work with me and wind up with an open hour because I simply can’t do it that day. For the friends who try time and time again to hang out with me and probably think I don’t care about their friendship or value our relationship. None of this could be further from the truth. The truth is I need you more than you will ever know. I need you to keep calling, keep trying and keep being willing to accept that last minute change in plans. I need this because right now my life is not my own. Right now, I am thinking about the therapy sessions for our week, the next DR appointment, the upcoming school conferences where instead of one conference with Charlie’s teacher I have 4 meetings that week so that I can speak with the teacher, the speech therapist, the occupational therapist and the behavior consultant. I cancel on you not because I don’t want to spend time with you or learn from you or become better but because I have been on a waiting list for occupational therapy for over one year and they called yesterday with a new opening that I have to take or risk waiting longer. They don’t care that I had plans or something scheduled and frankly neither do I. I do care and get frustrated but this is simply more important. It is difficult to explain to everyone that while I would love for my priorities to be my life, my health, my well being, my social relationships…..my priority has to be my child. I am sure all parents can relate to this on some level.

Being a special needs parent is enlightening, humbling, frustrating and lonely. I read a lot about our world in order to educate myself on how to handle various situations, what we can do to help Charlie and to become acclimated with a world that seems foreign to me even thought at this point it has become our normal. When I read blogs or books written by other mom’s I feel at home, I feel understand and I often feel sad. They all have something very similar in common which is that being a special needs mom is very lonely and isolating. We want to be the type of friend you can count on, we want to go on play dates, we want to find a sitter who can truly manage things for us while we go out for a few hours, we want to have way more free time than we do even though we are technically stay at home moms but it’s just not our reality. Giving you the details on why I need to cancel is difficult because I do not expect anyone to really get what it is like and it might be awkward for you to hear.

I am pretty lucky if I do say so. I am grateful to live with 3 amazing boys and am blessed with a loving and supportive family and group of friends. We have fun, we go out, we do vacation, we live in a wonderful town and want for nothing. In the grand scheme of life, a missed girls night or training session is nothing compared to what so many people are dealing with in their own lives. So yes it can be frustrating to have to constantly reschedule my life or feel a bit alone in my daily world, but it is all worth it because I will never regret or resent one minute spent making my sons life better or easier.

But I just wanted you to know – the amazing, caring, supportive people who have not given up on me, who continue to try and call and reach out – I appreciate you, I respect you and I need you. Thank you for not taking it personally and for knowing it really “Isn’t You.”