Category: Uncategorized

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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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.

Sometimes you just need a break….

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It is funny how procrastination works. It seems (for me at least) that the more I think about needing to do something, the more I tend to avoid it. I have not written in 4 long months. I can hardly believe it has been that long and during that time so much has happened. Many people have asked me if I quit the blog, gave it up or just decided not to write anymore and quite honestly I have not really been able to give a real answer because I was unsure of why I was not writing, where this “writer’s block” was coming from or if I would start sharing again anytime soon. My answers are always fairly honest – I have been busy, we just moved, I am tied up with the kids and getting our lives together, by the end of the day/night I am too tired, drained and exhausted to sit down and write, etc. These are all true statements and in fact it has been a very hectic but fun few months following our move to the new house, getting Charlie settled in school only to have summer come along which meant a change in schedules, a lot of down time with the kids, weekends at the beach and more. Yet every single night I remember and remind myself that I am supposed to write, I am supposed to share, I am supposed to do more.

And that is the exact reason why I have not been writing. Feeling like I am obliged or required to sit down and share my story makes writing so much harder than it needs to be. Apparently I have learned in life that I am a big “should-er.” I so easily tell myself about all of the things that I should be doing, should have done, should want to do that I simply forget to live in the moment, let go of what I or anyone else thinks I should be doing and actually just live my life. But sometimes, I just need a break and sometimes you just need a break too.

In them midst of the craziness day to day, the kids, the work, the house, family obligations, the unexpected things that happen no matter how much we plan, just life being life I have to believe that it is okay for all of us to take a break. Checking out when you are a parent or a spouse is not really an option and for good reason but for me while I can’t check out on life (nor would I ever want to), I can choose to let a few things go for some time in order to just get back to the basics and figure out what’s next. What do I really want to say? Writing just to write, well that is so not my style and so dear friends who have asked, and emailed, and texted and called I have no deep, profound answer expect that I simply was taking a break, a mini-vacation if you will. For the blog was something I started for myself and if I could not share in a beneficial way than I thought it best to simply step back and give myself some time.

There is more to come, there always is. It has been a summer of ups and downs, of amazing outings, days on the beach and a supportive team of therapists. It has been a summer of frustration and tears and meltdowns and tantrums. It has been a summer of changes and learning for everyone in my family and it changes day by day, minute by minute in our case and I finally feel like things are calming down enough to start to share yet again.

For those of you who have reached out, I thank you – thank you for caring for checking in and for wanting to know how we are all doing over here ( I truly appreciate it). And while it has been a tiring but fun summer, I can tell you that I am looking forward to the fall and getting into a normal routine, I will certainly miss the time with my boys; watching them on the beach, seeing my baby discover sand for the first time, learning that Charlie has a major obsession with popsicles, being able to spend so much time with family and close fiends, throwing a first birthday party on the beach and so much more. But I was always the sort of person who was excited for the first day of school, for the next change, for the excitement, hope and unknown that could be around the corner and I am still that person. I am grateful for the break in writing and in general because I feel that I have much more to say now after my semi-bout of silence so here is to an awesome last few weeks of summer and sunshine and looking forward to seeing what is next….

Do I have your attention…..a follow-up post

After thinking about my recent post regarding ADHD, I felt I had left out some important things and wanted to ensure I was sending the right message. Medication is in no way a cure all for ADHD and I know and realize that there are many effective ways in which to manage ADHD and other issues outside of medication. I am well aware that there are many positive results from dietary supplements, dietary restrictions, exercise, physical activity and in particular yoga and meditation to mitigate the symptoms of ADHD. For me personally, I have found many benefits in incorporating certain of these items into my life and I find that the more physical exertion we get from Charlie, the more calm and focused he is afterward.

I simply wanted to point this fact out as I know there is a lot of information on the web and many people feel that medication is wrong or not the best way to manage this condition. I agree in many cases and will continue to do whatever I can to ease both myself and Charlie away from medications if possible. There are many views on the topic and it was something I felt need a follow-up post from me.

It’s official….

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This is my very first post and in all honesty I have been avoiding the actual writing part of starting my blog. I have so much to say yet struggle with how to begin to describe the experience of my world. As I sit here and work on figuring out the technology side of the blogging world I figured it was time to actually start writing and sharing so here goes….. (more…)