A New Year, and A New Post

It's the last day of the year.  I haven't blogged for the majority of it.  The reasons are multiple, and really less important than interesting, so I won't bother to elaborate. It has been a year of struggle, a year of self-enlightenment and reflection, and in the end (quite literally) a year of triumph and blessings for our family.  We all have grown physically and emotionally together this year, and I want 2016 to continue to be a year of growth and emotional maturity for my family.  I don't believe in making New Years "Resolutions,"  but this year, I'd like to simply make a list of the things I wish to aspire for in 2016.  Resolutions, I feel, set one up for failure, and thus I don't like to begin my year on that note.  However, my new motto is "Progress, not Perfection," and with that in mind, I would like to share my aspirations  for this coming year.

1) Be True to Myself:  honor when I need complete solitude, or the company of a close friend or friends.  I can only be a better mother and wife when I listen to, and grant myself what I need in order to refresh and recharge. It is not selfish, it is necessary and important.

2)  Find myself again:  Who am I after having had this roller coaster of a ride for the past 7 years?  Motherhood, and the unique challenges that we have had as a family, has redefined me.  In many ways, this has been positive, but it has also morphed me into someone I no longer recognize.  This year, I hope to reacquaint myself with.....well... myself. Sometimes I think back to when just blasting my favorite music while I spent time being productive in my home, or relaxed and watched the movies or television program that I really enjoy when I had the opportunity (not the ones that everyone else wants to watch) could do a world of good in turning my mood around.    And sometimes, I'd spend time in places that maybe my husband or children don't fully appreciate the same way I do (a scenic park bench by the water, or sitting quietly in a coffee shop reading a book) that would help me to re-center or just take a breath and enjoy some serenity.   I need to remind myself of these things and places, and find them again for myself.  Change is good, but completely losing myself in the process of change is not a requirement. Frankly, I miss ME!

3) Be healthy:  This is a goal I have every year, but usually it pertains strictly to weight loss, and the fact that I "usually"  have this goal means that I have not yet achieved it.  This year, I will be striving for more of a holistic approach to health. By this, I do not mean acia berries and essential oils (though I'm open to this!)  but instead striving for a balance of mind and body health.  This past year has sent me well on my way to finding my inner peace, and this year, I hope to reach a place of mental and physical contentment.  Life, in any capacity, will never be exactly what we want it to be, but the way we respond to it is the only recourse we have. I will continue to find ways to take it in stride, even the parts that, in the past, have nearly suffocated me with sadness, hurt, anger, embarrassment, or depression.

4)  Yell less, love more:  In the chaos that is my life, with three children who are in the throes of emotional development (and frustration!) I want to make this world less of a struggle for them, while still fostering their independence and growth.  As parents, we always want and strive to do the best we can for our kids.  But that doesn't mean that we don't make mistakes along the way.  My kids are young, and I've already made plenty I'm sure.  This year, I will do my best to find better ways to deal with the parental challenges that push my patience to its limits.  Patience is a tough one for me, but being aware that it is not my strong suit can only help me to improve and be aware when it plays a role in my parenting approach. My kids are my world, and I always want them to feel and know this!

5) Unplug my family:  Like many families today, mine has been infiltrated and inundated with technology.  Heck, I'm the first to admit that I'm a junkie!  I love technology, gadgets, social media (well, not as much lately) and new toys.   But I feel that I am still able to separate the times when it is appropriate, and the times when it is not.  My children, on the other hand, cannot be expected to know this unless examples are set.  My hope for 2016 is to unplug my entire family during these crucial times when we should be interacting as a family.....not zoning out to you tube videos, games, or the television.  My heart sinks every time I look around the room and see everyone's face buried in a device or the TV, and now it is time to take action.

6)  Blog more!!! Yes, maybe this will be the year I get back on track.  I have been less than inspired or inclined to share my life with the world in the past couple of years.  I struggle with whether or not one day I will regret sharing so much of my life with people I don't even know (and frankly, more so with those who I DO know.)  But each time I read a post from a fellow blogger that hits home for me, and I feel that overwhelming appreciation for their honesty and openness in that moment, I begin to realize that I've had this same type of feedback from readers,  and should do all that I can to pay it forward in this one way that I can...through my own writing.  It's not to say that I am some kind of Autism or blogging guru....I don't hope to heal the world by any means.  But if just one person reads a post, can relate and benefit, then it has been worth my efforts.



I would like to wish a Happy New Year to my faithful readers, my new readers, and to those who have supported me in this endeavor in any way.  I hope that this year brings all things good, and I thank you for taking the time to hear what I have to say, even when it isn't really all that insightful or exciting!  I'd love to hear what some of your resolutions, aspirations, hopes and dreams are for YOUR year!  Feel free to share in the comments!  Until next time.....

Thank You For this Opportunity, Autism

I couldn't sleep last night.  I spent a better part of my morning investigating (again) what government services we may be (or most likely, in my experiences, are not) eligible for with regards to my son's autism and cerebral palsy diagnosis.   I go in spurts with this kind of thing.  It's either "balls to the wall"(where did that expression originate??) investigation on a topic, whether it be therapies, services, IEP verbiage, or whatever the flavor of the month is.  And eventually, I become so drained, drowned, and jaded that once I accomplish what I set out to do (or fail miserably), this quest for knowledge and help goes on the back burner for as long as I can get away with it.  It's a new pattern that has developed since we've joined the "Special Needs Club," and I'm  pretty certain I'm not the only one who operates this way, because it can be exhausting, frustrating, and down right maddening.

Let me explain how a typical cycle goes. About a year ago, I was told by many well-meaning health care professionals, and random people about the plethora of much needed "resources" that are allegedly available to my family because of the special needs status of my son. (and the quote, unquote is very intentional in this case.) Some of these include, but are not limited to, financial supplements, free therapy, respite care (this is a BIG one), medical coverage, and even programs for his siblings.  Sounds hopeful, right? Thus, I began the process of calling the major Community Living Services organizations to investigate which, if any, of these would apply to my family's situation. And let me insert here that I am NOT one of these people who feel ENTITLED to help simply because I have a son with special challenges.  Quite the opposite, in fact.  I seriously wish that I did not have a REASON to seek out these services in the first place.  However, with the advent of our diagnosis, along with the birth of my other two children, our financial situation has essentially gone from living a comfortable lifestyle, to one in which I have to wait to do the grocery shopping until pay day (and even then knowing I am shorting SOME medical provider, or skipping a utility payment in order to do so), and choose which bills I will and will not pay this month based on what we can manage in that given month.  I say this not to elicit any type of sympathy, but to paint a real picture of what happens to MANY hard working families who, like us, and much like participating in one of those  polar bear plunge events,   are SHOCKED with the expense and rate at which you must spend money in the early years of your child's life with the hopes and intentions of maximizing his potential and at the constant direction of every medical professional you meet.

But I digress..... With each phone call that was made today in the efforts to reap the benefits of said organizations, I  became increasingly more disappointed and hopeless.  I was either  shut down and referred immediately to another organization, flat out told that the program didn't apply to my family for one reason or another (and 99% of the time it was because it was income based, and does not consider any debts or other expenses related to our diagnosis)  or that the program that I was seeking information about (that perhaps another parent had informed me of because they were able to secure this service at some point,) was no longer in existence because the funds had been depleted or completely cut off.   Awesome.  The result was that I have learned an immense amount about what is out there, but what is clearly nowhere within our reach.

Anyway, I started this post about 2 weeks ago, and in that time after sitting through 5 hours of interviews, taking Nicholas out of school for two full days (so that the interviewees could verify that in fact, he does not talk, and needs a substantial amount of assistance with his daily living tasks) as well as making multiple and hours worth of phone calls to various organizations to complete all kinds of applications, I am here again at square 1. DENIED. DENIED. DENIED.

While I am not seeking a pity party here (PLEASE, no pity...we are not the only ones in this boat, and also there are many other circumstances that elicit this type of pursuance of help), I feel that this is an important part of our life to share with those who truly want some insight into what it is like to parent a special needs child....ANY special needs child. On top of the general care and dealing with the constant daily needs and nature of the diagnosis of the child, it is it's own full time job simply to advocate for them, whether it be at school, financially, or otherwise.  And trust me, with three young children, it's not a job I prefer to spend my time on when there are little people who need and DESERVE my attention.

That said, here is the plus side.  This inspires me, and pushes me beyond my comfort zone.  In a sick and twisted way, I am thankful for the experience because it has lit a fire under my arse, and has pushed me to challenge myself. It is forcing me to be resourceful, more efficient, more cost effective, and even "scrappy" if you will. As a direct result of these wasted countless hours of my time seeking help, it has forced me to realize that I will have to figure out my own way to make this work for my family.   In fact, I'm writing my first real grown up business plan to create a company that, with any luck and success, will help to support my family financially, while also benefiting other special needs families.  This course of action would have never even occurred to me  3 years ago, before we were faced with these challenges.

 There is an incredible need for middle income families with special needs children to receive financial help and support, and  the government simply cannot provide for these families. And I suppose in my heart of hearts, I get this, despite my wasted time and frustration.   But that  doesn't mean we can't support each other, and that has become my new mission.

Thus, I thank you Autism, for inspiring me, and giving me not only purpose, but courage.  This too shall pass, and better things are to come.  It's all about perspective, and I choose this to, instead of break me, become my new opportunity.