Getting Back Into Focus

We moved from Montgomery, Alabama to Satellite Beach, Florida in the summer of 2014.  I haven’t posted since then.  We enjoyed the beach style living for three years.  My quiet walks along the beach, breathing in the ocean air and picking seashells, are especially memorable.  During this long pause of no writing I felt that I was done processing, reflecting, and healing from the ups and downs of living with special needs.  I was done, I thought, or at least for a while.  It was time to move forward, accept things as they were, and let life settle.  I was forty-five years old, and it was time to take care of myself a little bit more.  

In addition to the piano playing which I always continued, I began jewelry design and joined my mother in acrylic painting classes.  These hands-on activities provided me with a much needed creative and therapeutic outlet.  In hindsight, I should have also continued writing.  It would have been a huge help and comfort to me in dealing with the challenges that were heading our way.  It could have continued to be one of my creative outlets.  I suppose I was craving some means of expression without having to put thoughts into words.

In July 2015, after our first year beach-side, Alex deployed for half a year; not including the obligatory month of pre-deployment training.  This was his second deployment to date.  Five weeks into this deployment, we had to move out of the house for three weeks due to mold growing in the air conditioning ducts.  We had our belongings moved into storage, and a complete move back.  I had to put everything back mostly on my own upon our return; “a move within a move.” As you can probably imagine, I was less than thrilled.  

To make matters worse, during those three weeks of not living at home, Max broke his arm at the playground.  I felt as if God kept piling on the challenges for me.  The deployment itself was a big enough challenge to get through with a special needs child and twins. Fortunately, my in laws came to help during that chaotic period.  At that point my spirit was broken.  I went to see a counselor at the base who specializes in deployment and reintegration issues.  I saw him for the rest of the deployment and he was very helpful.  

My parents came later that fall. That daily help, especially with driving Jake, was priceless.  My “snowbird” parents came for six months a year and stayed in a townhouse near us.  When the three years were over, it felt like an end of era. I knew that I would greatly miss not having them near by and not be able to enjoy their company anymore.

Jake had excellent autism services at The Scott Center for Autism Treatment, so I was committed to making the daily drive.  I either had a two hour round trip, or an hour long trip if I stayed there for the three hours. It was not ideal. After his three hours there, I took him three days a week to Achieve therapy for speech and occupational therapy.  This was great for him as he received both speech and OT simultaneously. This enabled him to move around the room for breaks and not be stuck at a desk after a long day.  By the third year, I was exhausted from the daily drive to and from therapies.  I was ready to get back to in home therapies, even if it was just at our next location.

Jake had made significant progress, most noticeably during the third year.  I was heavily involved in his final month of therapy.  I was getting trained in learning to reinforce all the skills that he’d mastered, so that we could have a smooth transition to our next location.  I felt very confident that I could help him through the move.

We lived in the south for our first ten years of military life. We moved in late July 2017 to Virginia and I was excited to experience the beauty of four seasons again. Since the school year started much later than in Florida, Jake was out of school during the summer longer than he’d previously been.  At our new location, Jake was out of school and therapies for an additional five long weeks.  This was a tough period due to the inevitable regression he experiences every time we move.  While I knew that this regression was unavoidable, watching him regress with dwindling speech and a return to some old behaviors, such as vocal stims (making sounds is a stimulatory act for some autistic people) and mostly pointing to things, was especially difficult to observe.

We came to Virginia with Jake in May to house hunt and set up therapies.  We thought that seeing the new place would ease Jake’s transition. We were then told that by the time of our arrival Jake would be able to start therapy right away.  Unfortunately, that was not the case.  Due to a shortage of therapists, we were still on waiting lists well into the start of the school year.  This extra long period without therapies exacerbated Jake’s regression.  It was a very isolating period which took a heavy toll on me emotionally.  The way I got through it was with Alex and my parents' support, and telling myself that this is only temporary.

When school finally started Jake began to normalize.  He had missed his predictable daily structure.  Soon after, we started with twice a week speech therapy, and once a week occupational therapy. ABA (autism therapy) started a little while later, but we are still now only at twice a week – when he should be receiving five days a week.  Over the past few weeks, Jake started doing an ABA social skills group on Saturdays.  It’s been a slow start since our arrival, and we are not at maximum hours yet. This is pretty disappointing, as we’d heard such good things about therapies in the D.C. region. There really isn’t anything that we could do, except for rolling with it. 

Five and a half months in, and we have settled into our new home and are into a family groove. The twins are busy with soccer and school.  Alex started his job straight away and got into a routine quickly.  I don’t have to pick up Jake mid day to take him to ABA therapy anymore, as I had to in Florida.  Having the in home therapies has been so nice.  It provides me with more downtime and I’m able to get a lot done, practice my piano several hours a day, and give piano lessons.

Over the last couple of weeks a distant yet familiar urge hit me.  I recognized that I need to start writing again.  It was important that I figure out why I abstained from writing for so long in order to start writing again. This took some soul searching, but I eventually got there.  The life events that I shared above, took up my energy and my focus.  Now that we are settled and I have more time to myself, I am able to write again.  My head is much clearer and I can catch my breath again.  So here’s to a happy and healthy new year 2018 - A year I hope to bring continued clarity, personal fulfillment, and peace to us all.

Things That Make A House A Home

After a military relocation to our new home at another base these past weeks, I found the chaos of the move had set my spirit into a tizzy.  Even with months of preparations: giving away old clothes and baby gear to Goodwill, getting rid of unnecessary papers in order to lighten our load, the move proved to be difficult, nonetheless.  With boxes of household items and books everywhere, the box that I had wanted most to find was my piano music scores.  After several days of searching, my husband, Alex, thought that it may be in a pro-gear (professional items) box in the garage - go figure.  Funny, but after several military moves, I didn't feel much like a pro at all.  If anything, I felt pretty overwhelmed. I just wanted to get into some sort of groove as soon as possible.  I was fully aware that this was going to take some time and that I need to drastically lower my expectations and face reality. 

As summers typically go, with our child living with autism, it's not my favorite time of year.  I know that many families can completely relate to the lack of structure and difficulty in finding activities that would suit our kids.  Forget about not wanting to be exhausted all day long; we don't have that luxury that is quickly forgotten about during the school year.  There is only so much time that an average non southern native adult can tolerate in the heat and especially in the heavy humidity.  Every summer seems to present the same dilemma for me.  In fact, it feels like I just wrote something similar about the same time last year.  A summer of relocating however, brings with it additional challenges (on top of which, poor Jake was very sick for over three weeks before the move and we were both cooped up and exhausted).  Some of these challenges involve: getting to know the new area and figuring out resources (while trying to provide some sort of daily structure), making new friends of my own (this should actually fall at the bottom of the list, but lets face it, it's a very real need), finding autism support, dealing with "the broken record" (repetitive words and phrases that autistic kids say) and its effect on my psyche, escalated screams and tantrums (which I affectionately refer to as "the angry peacock" - if you've ever heard a peacock, you know how loud its calls can be), and last but not least, excessive demands for Jake's favorite activity, the king of all kings: the iPad; my dreaded arch nemesis.

You may be thinking that well, what's so bad about the iPad?  It can be used as an educational activity, right? If so, then you are indeed correct.  With some kids living with autism however, if not closely supervised, this activity can quickly turn into an OCD-like, undesired behavior such as: hitting buttons over and over, watching the same thing repeatedly or doing the same program repeatedly.  Somehow, Jake figured out how to get into YouTube and find his favorite Baby Einstein episodes.  He'll watch parts of it repeatedly, just to see the face of the Einstein's head.  We think that he got attached to this image from his baby days, loved it so much, and that image just stuck with him.  Perhaps it was his first childhood friend. 

Even if we delete YouTube, because it's in our user history, Jake figured out how to re-access it.  In the past, we have used the iPad as an activity re-enforcer/motivator in his ABA sessions, and it was incredibly effective.  When he's lounging, and not in therapy, we've set a time limit on it's use and give him transitional updates of how much time he has left in five minute increments.  We break down the last five minutes and announce 5, 3 and 1 minutes, before announcing that time's up, in order to ease his anxiety about the ending of the activity.  This helps him transition out of it into the next one.  For a while, he was only doing educational activities on his I-pad and we were very pleased to see how well he was working with it.  Since this summer's move though, old repetitive behaviors have come back with a vengeance.  This was to be expected.  After all, it's not our first time at the rodeo.  However, it isn't easy to deal with by a couple of not well rested parents.

After several weeks of being in this transitional phase of moving, feeling unsettled and no social time, we went to a Shabbat dinner at the Chabad community center and met some very nice families, including two who were also coping with autism.  Several of the other families were also new in town, so it was nice to be somewhere where others were going through a similar experience.  The newness of our environment, juxtaposed with some very old traditions like lighting the Sabbath candles, good food and good company, was just the thing to make our transition more comfortable.  I have to make a mental note and remember to find things and traditions that are familiar and bring us comfort when faced with lots of new things. 

Part of wanting our family to have a military lifestyle, is that we didn't want our children to feel like they were ever living in a bubble or growing up with a sense of entitlement.  We wanted them to grow up moving around, meeting new friends, seeing how other people live in other cities and countries. Exposing them to different races and religions would help develop a sense of acceptance of all people.  We wanted them to be able to be well adjusted individuals because of their life experiences.  We wanted them to be able to empathize and be accepting of all sorts of differences. This, of course, they are already learning at home, by being siblings to an autistic older brother.  We are already seeing what we hoped for take place.  The twins have adjusted incredibly well to our new home and their summer camp.  I am so proud of our kids!  Putting things into perspective is, in a way, like stepping away from the small details seen through a kaleidoscope, and seeing the bigger picture more clearly.  We sometimes can get easily caught up in the smaller details, but if we take a step back, the reality is so much simpler.

Good news! - this afternoon Alex found the box of my piano music and I eagerly arranged my scores (yes, by composer, in alphabetical order) on the living room shelf that's across from the piano.  Looking around, I see that things are actually starting to come together nicely.  I look at the wall hangings and masks that we have up from places that Alex and I have traveled to together.  There are still stacks of family photos waiting there for me to put up and fill up more wall space.  You know, this is probably the thing that I most enjoy doing after moving - decorating.  I plan on taking my time putting up the rest of the photos.  With each one up, I bond with the new home a little more, letting it also get to know its inhabitants a little more as well.  The military owned property in this little beach town is starting to look like a home; our home. With all the moves we've already had, and with more future moves yet to come, Alex really puts it best: Wherever you and the kids are - that's what I call my home.  I couldn't agree more.  

The Locked Gate – A Key to Freedom

In the grassy courtyard of our old synagogue, stands a large doorway gate.  Its eye-shaped intertwining metal wiring gave view to a beautifully soft cloudy blue sky that Sunday morning.  In a glimpse that seemed to last quite a while, I had stolen a moment to capture this gate in a photo.  Meanwhile, Jake was swinging up into his own clouds, just a few feet away from me.  He joyfully swung up in the air, clapping his feet together rhythmically in delight; as if his feet were cymbals crashing in percussive accents into the air.  It is what I imagine the ultimate sense of childhood freedom to be - conducting our very own symphony. 

It is intriguing that a predictable repetitive activity would invoke such a sense of freedom.  We often think of freedom as something that breaks through the mundane, the repetitive and the predictable.   We imagine freedom as a destination and maybe not so much an activity.   But maybe, freedom is a sense of comfort in being happily suspended in the air.  When we look down, we have the safety of knowing that we are not far from the ground and when we look up, there is the sense of anticipation of how high in the air we are going to get.  I remember how thrilling it was to swing up in the air as a child. 

When did we lose that sense of fun over simple childhood activities?  When did that sense of freedom and wonderment go?  I still think that it is really only the simple small things, and appreciating brief moments in time as we live in the present, that will ever give us that same sense of freedom.  It may even restore that childish naivete that leads children to ask about what is so intriguing to them.

Looking through the locked gate, I realized that the appeal of taking time to appreciate where I stood was about the contrast of hard and soft – the gate versus the clouds.  Similarly, the hard-wired structure in our lives provides safety and security for us all, just like that locked gate provides security to whoever stands within the confines of those grounds which the gate protects.  It does so all the more for a child living with autism.  This child craves and needs this daily security and a predictable schedule.  He needs the security of a structure with a repetitive rhythm so that he knows what to expect.  This helps to alleviate any anxiety about what is coming up and what he can look forward to.  That repetitive rhythm, just like the rhythmic swinging in the air, creates a comfort and pacing for him; It is his key to unlocking that gate.  It is the key to alleviate anxiety about the unknown.  We all want to loudly crash the cymbals to our own symphony.  Wouldn’t it be something if each one of us could hold such a key in our very hands?

Was the sky so captivating to me that morning only because I was looking at it from a locked gate, or would it have been as beautiful and mystical to me without the gate that was in the way of my view? I wondered.  Is it only those unattainable, those unreachable things that still intrigue us, as if we were still that inquisitive child in the playground? Do we ever really lose the mystique of magical childish thoughts like what it would feel like to touch the sky, or to touch a cloud?  

Oh I have much to learn from this child that is always true to himself.  He is so determined, curious, and unapologetic and genuinely himself.  These are things that most people aspire their entire lives to achieve.  We want to feel that true sense of self and acceptance of who we truly are and to be happy and at peace in that moment in time.  This beautiful child is not burdened by silly thoughts of what others may think of him or how his interests may appear to others.  No, such wasteful thoughts have no place in his young mind.  He knows exactly what he wants, he is strong minded, smart and willful.  Most importantly, he holds the key that unlocks that gate, and is therefore free to be truly himself.

It was only a brief moment in time, there in the courtyard.  But in that moment of looking through the eyes of that gate, I saw there a lifetime of meaning and symbolism.  The key to unlocking that gate as a collective society is acceptance.  We all want the same thing - to be loved and appreciated.  We want to feel accepted exactly as who we are.  Each one of us is a locked gate, and the key to unlocking it and reaching freedom, is acceptance of each individual in all of our true colors.   

The Terrible Two's At Age 6 1/2?

I remember reading a few weeks ago about Autism Speaks having a live chat with Dr. Temple Grandin.  Someone had asked her a question about communication and she shared that when she was a young child, she knew what she wanted to say in her mind.  She even had the exact words that she wanted to say, but couldn't physically get them out of her mouth.  Imagine how incredibly frustrating that would be.  I know that I would become angry if I were in that situation - wouldn't you? I have to wonder whether Jake is experiencing the same thing and is physically acting out of frustration.  Perhaps he is acting out to get some sort of sense of control?

I also have read (I can't remember which autism related book it was now) that "whenever in doubt, presume intelligence."  This means to always give your child the benefit of the doubt that he/she understands what's going on and what we are saying.  This is also why it's so important to not speak about your child and autism issues within his presence, as if he is not there.  This is something that Alex and I are consciously working on and we'll catch one another if we do this.  This brings me to the point that I had found myself in yesterday afternoon, after picking Jake up from his new summer program:

I am frustrated.   I am frustrated and tired.   I am tired of being frustrated.  I am frustrated and tired of going through the autism roller coaster of cyclical behaviors.  Right now Jake is into hitting and kicking and that's been going on for several months now.  It's completely ironic that my mild-mannered, sweet loving and gentle son is expressing his frustrations through hitting and kicking - but nonetheless, here we are.

It feels like some sort of developmental milestone.  It's like going through the "terrible two's," but we are six and a half years old, and weigh about 60 pounds.  In fact, it's Alex's theory that since Jake is developmentally delayed, that he's actually going through his "terrible two's" now; close to the age of seven.  Could this actually be a plausible theory?  It does make total sense to me.  The frustration that he's exhibiting, probably due to his speech delay/lack of speech, and not being able to quickly express his needs and thoughts verbally, is causing him to act out physically.  It also feels like an impulsive response to anything displeasing to him.

It is not easy to watch for me, and it is also the kind of behavior that doesn't get defused overnight; we've been dealing with this for several months now.  At first, it was just mostly during ABA therapy, but now that he started a summer camp program, these behaviors manifested themselves right away. Once again, I am frustrated that I don't have the right answers and I don't know what to do.  So here I am, frustrated on many levels - including being frustrated for him, on his behalf, that he's not able to express himself in a socially acceptable way right now.

I am worried that this behavior is not getting defused quickly enough and may be becoming his new norm for the time being.  I worry that if this doesn't get defused soon, that he may get kicked out of his summer program.  This is stressful for me because it means that the program failed to address this correctly, and it also means that I have less time to get things done at home, and have some time to myself.

My plan of attack is to come and be there with him during his program, observe his behavior and also see if my presence brings him some comfort.  Maybe this would help him settle in more easily to his new environment.  We will also have our BCBA (Board Certified Behavior Analyst - who works weekly with ABA therapy with Jake) come and discreetly observe him and see if he can give me and the teachers some feedback.


Now for some of the positive things that happened this week
1 - Jake started saying "Mommy" at the beginnings of his requests, and not just asking for things without calling me anything.
2 - When we were playing around he looked at me with a loving smile and said "I love you" all on his own.  This was non-prompted, which opened up the flood gates to at least ten more I love you's from him.
3 - He is now able to read 5-6 sight words in a row, when last week it was challenging for him.


Closing thoughts
There is definitely some growing that is taking place right now.  We tend to observe it with Jake in spurts and it's consistent with a pattern of two steps forward - one step back.  There are always back steps in his growing and learning process, but he keeps on consistently moving forward and developing in this type of progression.  While some things, like the undesired behaviors of kicking and hitting, are not pleasant and take a lot of persistence and work to defuse, other things, such as the positives that I reference above, are incredibly encouraging.  They bring me hope of what is still yet to come from this beautiful son of mine.  I am so thankful for those moments that take our breath away.  These moments are those times in our lives which inspire us to keep keeping on.  These moments inspire me to keep loving as much as humanly possible and to stay the course, one step at a time.

A Cure for Autism? Thoughts and Reflections

There are some strong feelings circulating in the autism community about the idea of a cure, or a recovery, in regards to autism.  While this is a tricky subject to discuss for various reasons and opinions, I often think about the idea of a cure and what the future may bring.  Where does my own comfort level fall within this spectrum? What do I think about a potential cure for autism within the near future? Where do I envision our society heading in this collective journey, in what is still largely a mystery?

I have read many times about parents being offended at the idea that their child would even need a cure, when he or she is not sick.  After all, autism is a neurological disorder, and not a disease like cancer, heart disease or diabetes.   I completely understand and can relate to these sentiments.  There are parents who feel that autism is as much a part of their child’s personality, as their hair and eye color is a permanent physical attribute that a child possesses; this being a part of their core make up.  Utilizing a cure (if it were even possible) would then imply that we are going to and/or want to change our child’s personality.  In that sense, it is a difficult concept to break down and process.  This would also present other challenging questions such as: if a child is more severely autistic, does autism make up a larger part of his or her personality?  This makes the issue of a cure even more difficult to take in.  I am one of those parents who believe that autism is a big part of who my child is.   It doesn’t define who he is, but it does play a large part in how he perceives the world, and every interaction that he experiences.   

Alex and I believe in teaching skills through therapies (specifically ABA therapy and then to a slightly lesser degree, speech and occupational therapies) that break down learning into smaller steps with lots of repetition on a daily basis.  We have many friends who take various approaches to treatment that work for their child and their family.  We are not seeking to impose our view of therapy on anyone – we are simply sharing what works for us.  We also stay open to the idea that at some point in the future, there could be a cure to some or many symptoms associated with autism.   This would possibly help with anxiety during transitions from activities and helping the ability to better focus during certain activities.   We already know that there are medications out there that help reduce anxiety.  We know of Ritalin, which helps those coping with ADD/ADHD focus more easily. Similarly, we also know that in autism there are parts of the brain that don’t send signals as effectively to each other, causing a weakness in responding to certain social situations.  What if in the future a treatment were to be found to help with those connections in the brain in autistic individuals?  While it is not possible now, if a scientifically recognized and accepted treatment became available in the future, we would not be closed off to it.   

Jake's class - reading activity

For me, the idea of a cure is not a cure in the sense that one would have a single or even several treatments and be “cured” or “recovered” of autism.  I think of the idea of a possible cure in which a treatment would help with certain symptoms of autism, but not wiping out the autistic traits.  There are parents out there who report that their child was autistic and has recovered from autism.  There are kids out there who eventually lose their autism diagnosis.  It is hard to know what to think about such scenarios, as every individual with autism is so different.  From the reading and research that I have done over the past few years about the subject, I have come to believe that although someone can make huge strides in therapy, there will always be natural autistic tendencies in a person, and while he or she may “blend in” to the rest of society, they will have to fight natural autistic tendencies as they cope through the use of tools and skills acquired along the way in order to fit in.  Depending on the severity of autism in that individual, it may be a harder or easier task to do so.

I keep a realistic approach to what we need to be focusing on now as far as teaching functional social and academic skill building, and I don’t have a false sense of hope for a potential cure.  I do however think that with more awareness about autism, as more kids get diagnosed and plugged into therapies, and funding for autism research continues to grow, it is not far fetched to think that medically treating various symptoms of autism can be attained during our lifetime.   

The Sensory Room at Jake's school - the Autism class spends time there during the day

Another aspect of a cure that is also valuable to me is the idea of a healing taking place in our society.   I envision parents continuing to make connections with other parents in autism families, providing support to one another, and promoting a sense of well being and supportive atmosphere as we lift each others spirits. 

I discuss in other posts how autism affects the entire family and how parents have to keep it together daily.  The stress that this produces can sometimes be debilitating on parents emotionally, on a personal level and in a relationship context with one another; not to mention the affect it also has on siblings.  While many of us focus on the daily tasks to maximize learning while keeping our eyes out for a potential cure, we shouldn’t forget about being supportive to one another in the present.  Let’s help keep each other going and moving forward in this journey as a community. 

Meanwhile, we will do what we can to facilitate learning and setting our children up to lead a life that is as fulfilling and as independent as possible.  In the case that we don’t find a scientifically proven cure, we will always know that we did what we could to safely provide the very best for our children as they move forward in their own journey, with the tools, skills, support and love that they’ve been provided with all along the way.

Visit my blog:  

Lily and the Roses ~ 

Creativity with Autism, Twins and Military Adventures 

http://lilybrose1948.blogspot.com

Leave me a comment if you find any of my posts meaningful to you.  Feel free to share posts with your friends to help us raise autism awareness and acceptance.

 

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Creationlily.blogspot.com 

Where I display 

my artwork, music compositions and travel photos 

Creationlily

Why Autism Families Can Benefit From Blogging

With April being the international month of Autism Awareness, I am sharing about one of the biggest passions of my life.  Taking it a step further, I explore why autism families can benefit from blogging, and consequently, raise autism awareness in such a fantastic way!  Blogging about family life with autism is a great way to reach out to more than one person at a time, and take awareness to a broader platform.  Other families can benefit from shared experiences, knowledge, resources and support provided or needed by the writer.  This resource wasn't available during the previous generation that coped with autism.  Since autism is a fairly newish field, we are learning about it as we live it.  Our recollections and experiences are crucial to research and to getting to the next stage of finding out more about causality as well as a potential cure.  Imagine if parents thirty years ago had access to insights that the Internet provided back then, just how much farther along we may be as a community.  If you are a member of a family that is coping with autism, I bet you have a lot to say.  You may not even realize just how much you do, until you start writing it down.  If your family copes with autism, you've got a story to tell, and if you write about what you are passionate about, you can't go wrong! 

9 Reasons for autism families to start blogging

1.  Raise awareness  

This is the number one reason that I started a blog.  By blogging about your family life with autism, you are raising autism awareness in a very personal and meaningful way.  When we Light it Up Blue on April 2nd, we honor our loved ones that live with autism.  Part of raising awareness however, is also shedding a light on how autism affects the whole family.  Therefore, in events such as Walks For Autism, we empower families, and not only individuals.  It is important not only to raise awareness for those who don't know much about autism, but also to encourage families with very young children, to get early diagnosis and early childhood intervention.  Studies have shown that doing so is key to a higher quality of life for the child later on.  By tapping especially into the early childhood years of ages 3-5, you are catching a key developmental time in your child's developmental potential.  We now have the ability to catch signs of autism from extremely early on, where a generation ago, this was not the case.  If we can help families that are not aware of this, ain't that something grand! 

2.  Provide support to other families

When a family first starts out on their journey on the autism spectrum, the first thing that they want and need is SUPPORT!  Receiving support is the greatest gift of all.  By providing support, even though you may need it yourself, you will experience a wonderful type of healing that transpires within this process.  The kind of support that I continually look and long for, has not been easy for me to find, so I try to offer it to others.  No one can do this on their own and keep a healthy mindset.  That old saying, "It takes a village to raise a child," well, that's exactly spot on.

After receiving Jake's autism diagnosis in '09, the progression of events went something like this for us:  You are shocked, sad, angry, helpless and frustrated.  You blame yourself, perhaps that somehow, it may be your fault.  You think of dreams that you have for your child - all the could have beens, and your spirit is crushed.  You may be in denial that, maybe your kid was misdiagnosed, or that he can grow out of it in a few years, and you may also be numb of emotions.  You are physically and emotionally drained.  You want to move forward at some point, but are totally overwhelmed.  

Suddenly, you have to cram study a new language called Autism, so that you could better understand your child and provide him what he needs.  You want to do right by your baby and provide the very best possible, but you realize that since you know close to zero about what is taking place, that you feel like a child, yourself.  Your parents did not prepare you for this - no one did.  You don't know how to move forward.  You lay awake for nights on end, tossing and turning, at best.  You have to learn about all of the therapy options, schools and resources out there, make appointments and get on waiting lists.  But mostly, you feel alone.  You worry about having a stigma put on your child, about people looking at him differently, and talking about him in insensitive ways.  You worry about bullying.  The worries are endless.  Once you get through this initial part of the journey, and things start to sink in, you realize all that needs to happen immediately.  You try to get your senses back to normal, to get your bearings.  However, life as we know it, is no longer on "Plan A," and there is no more "normal."  Instead, a new "normal" is about to take place, as you brace yourself for the ride of your life.  

Since the start of our journey, I joined a meet up support group back in San Antonio, made friends with other autism families, and sought counseling by an experienced autism support counselor.  I took an autism resource class and Alex took a fantastic advocacy class.  We went on yearly Walks For Autism, which was the first time that we felt empowered by hundreds of people that came to support their loved ones as a community.  If your family has gone through this ordeal, you are absolutely the best source of support to other families, because you know exactly what it means, and you simply get it.

A couple of years into this process, I founded my own autism online closed Facebook support group, Puzzle Pieces.  I initially started this out, because I needed a support group to be mobile with me throughout our family's military moves.  We share research articles, inspirational visuals, therapy resources, updates on how our kids are doing with therapies, and provide confidential support.  I also founded a meet up sister group locally, Puzzle Pieces - Autism Support in Montgomery, AL.  If you are affected by autism and would like to join the online group/s, you can contact me.  https://www.facebook.com/groups/129900443760015/  

 

 3.  Receive support

By blogging about autism, you will receive support from others in the autism and special needs community, as well as friends, new friends that you will meet along the way, and readers who may or may not have any background in autism.  By blogging, you reach out with your words, and these words have power.  You are putting your energy - your karma out there.  This energy will come back to you threefold, get started and watch it happen!  

Don't shut out people that don't have a special needs family.  Moreover, don't fall into the mindset of it's me and my child against the world, or me and my family against the world, inadvertently, isolating yourself.  This is a dangerous predicament to find yourself in, as it can lead to depression and loss of hope.  Also, how can we raise autism awareness if we only surround ourselves with autism/special needs families?  

Sometimes support comes in unexpected ways.  It is those families that don't cope with special needs, that can often be that source of this support, because they have the ability to do so.  They can be there for you, simply because they don't have your family scenario, and therefore, have more energy, or the capability to help you out.  DON'T PASS IT UP because you don't want to seem needy or feel uncomfortable receiving help.  Give yourself that well deserved break that you know you need.  Be open to different kinds of friendships and support, because you will want a balance, and as my husband Alex says, "you can't breath autism 24/7."  It also gives you an important opportunity to recharge yourself for your family, and isn't that priceless?

Matching magnets to text - activity taught in Jake's autism class

4.  Prevent bullying

By promoting awareness and acceptance, we consequently stand up to bullying.  Bullying is a major worry for parents of kids on the spectrum.  The more severely autistic a child is, the more chances there are for this child to be bullied because he/she sticks out in a crowd.  Statistics are varied on this, but range from 46% to an astonishing 90% of kids on the spectrum who will get bullied at some point, and that it's more common in public school settings.  These are startling statistics!  Imagine our kids that don't have the ability to speak.  How are they going to let us know if they are being bullied, other then by showing us a different behavior such as crying, or acting out?  We would have to do the math, and figure it out on our own.  By raising awareness, we speak out to other parents about instilling principles of kindness and acceptance of others' differences.  If children are to be raised to value differences and treat others kindly, they are less likely to bully others. 

5.  Stress relief

Blog for a personal outlet, therapy and stress release.  This is a different sort of outlet that you can not get from having a conversation with someone else.  Let's face it, we can all use some therapy every once in a while.  Why not proactively get it on a regular basis, by writing down our thoughts?  Some people, of course, already do so by keeping a personal journal.  This is different, in the sense that it is not private, so you will decide if it is the right outlet for you.  You may decide that you want or need to do both, as you probably wouldn't disclose the most personal details of your written journal in your blog.

6. Tracking developmental milestones  

This is a great way to keep track of therapy goals, interesting things that happen or get said.  This is a wonderful and handy way to record special moments that you want to save and share with others.   Just the other week, I wrote a post called Book on the Roof about a week that my husband was out of town, and the funny and ridiculous things that happened on the first day.  I'm glad that I wrote it down, because I know that the little details of that day would eventually fade from my memory and be forgotten.  I know that other families were able to relate to that post, and by writing about it, it also provided support and encouragement to other families, as well as some comic relief for me.

7.  Inspiration 

You never know how inspirational reading someone's story can be to someone who needs a smile or some hope on that day that you posted.  Words can have a powerful impact, and readers can take a multitude of messages from your words.  Be yourself and keep it real - don't try to be something or someone that you are not.  Sincerity is always best, and this way, you are sharing your own unique beautiful and personal voice.  

8.  Strengthening Family Relationships
In our family, we have experienced couple blogging.  I started blogging first, and within a short period, Alex started his own blog as well: Capt Dad - Family Life With Autism, Twins and the Military http://alexjrose.blogspot.com/ and what a great thing it has been! Our individual recollections have consolidated into a family effort of raising awareness and extending a hand of friendship and support to other families.  Doing this simultaneously, individually, and also as a team, has strengthened our partnership, our resolve, and in our moving forward as a family. 

9.  Connecting the puzzle pieces 

By raising awareness, providing and getting support, talking with others about autism, and promoting acceptance, you are personally filling in the missing puzzle pieces of that larger global puzzle.  By making these connections with our efforts, we are actively completing this picture.  Since there is no cure for autism yet, we are providing the only cure that we currently can, by connecting the pieces and being there for one another.  There is power in numbers!  Your blog will receive views from countries all over the world, as you make a difference on a larger platform.  It only takes one person to make a difference, because that one person can influence others; it's a domino effect.

Jake at age 6 1/2  - Occupational Therapy 2013

How to get started

Have you thought of the title of your blog yet?  I suggest something memorable that summarizes who you and/or your family is in one sentence or phrase.  Maybe even a phrase that your child loves to say.  Think of something meaningful to you that captures your/your family's essence.  I started my blog on Blogspot through Google.  If you go this rout, set up a Google profile, including a photo, a self description, your interests, and what you write about.  Set your privacy setting accordingly on your profile - following the steps is user friendly.  Once you are all set up, it's pretty much like writing a word document: do a spell check, have someone do an edit read through for you if you like, and press Publish when you are done. 

Privacy Settings

You will want to have personal guidelines and limitations of what you are going or not going to disclose.  Things to avoid disclosing are: specific personal details such as dates of birth, financial information, or anything that could lead to identity theft.  Avoid disclosing any extremely personal information and anything that would lead to an invasion of privacy of your partnership.  Refrain from anything that may offend some of your readers.  If you know that family reads your posts, then do not write things that can hurt anyone's feelings - use your judgment and discretion, of course.  Basically, be mindful that this is an open resource to all readers, unless you set your blog to be viewed selectively.  Keep in mind that if you do so, you will not get as many views.

Community Blogs

Once you get your blog going, you can request to link your blog to other sites, such as the family blogging on Autism Speaks.  If you happen to be a military family, you can link your blog to AMFAS (American Military Family Autism Support - http://blog.amfas.org), MSNN (Military Special Needs Network) and Milblogging.com (Military blogs).  This will give you additional views, as well as being part of these blogging communities.  There are many other sites out there that you can research and join.  You can also share posts on Facebook, that way, friends can view your posts conveniently when they are online.  If you set your post setting to Public, you will receive more views.  On my blog, I added a Note to Reader, asking readers to share posts that they find meaningful, helping us raise autism awareness in this way.  These are just some additional ideas to consider, as you move forward in your blogging journey.  

Montgomery Museum of Fine Art

The Rest?

The rest is what I think of as an open canvas with a multitude of dimensions and limitless possibilities.  I hope that you enjoy and find much fulfillment from blogging about autism.  It can be a life-changing experience.  If you would like to get started but need some encouragement or moral support, feel free to give me a shout in my comment section below.  Who's ready to give it a go?   

To new beginnings!

Visit my blog:  

Lily and the Roses ~ 

Creativity with Autism, Twins and Military Adventures 

http://lilybrose1948.blogspot.com

Leave me a comment if you find any of my posts meaningful to you.  Feel free to share posts with your friends to help us raise autism awareness and acceptance.

 

Visit my other blog: 

Creationlily.blogspot.com 

Where I display 

my artwork, music compositions and travel photos 

Stop by and share posts with your friends

Creationlily

The Perfect Rose

The Perfect Rose is a companion piece to my second post: 1-2-3 And Nobody's Talking: http://lilybrose1948.blogspot.com/2012/10/1-2-3-and-nobodys-talking.html  I wrote this piece as a means to track and share about the changes that we've recently experienced with our kids' progress in their individual speech therapies.

Things have not been as black and white for us as I had hoped, but we try to do what we can.  We continue to facilitate learning, to plug into the necessary ports and move forward.  Reading my previous post first, will present to you what had preceded the point at which we have arrived today, and give you a more complete picture.  We have lots of good stuff to look forward to - all the way around!

Jake at a local pumpkin patch farm

Talk is not cheap 

For our family, talk has been nothing short of cheap.  I mean this in the sense that all of our kids have had to go through speech therapy.  Thank goodness for our military health insurance - a huge perk! Had we been paying out of pocket for all of the speech therapy that we've accrued over the past few years, we would be hurting worse financially.  In the civilian world, our life would in no doubt be more complicated in this respect.  We would do what we had to do regardless, and we would find a way to make it work.  It is no wonder that non military families facing special needs take a much harder financial blow, and that's just speaking inside the US.  Granted, many non military families have the ability to make larger incomes than military ones.  It is often at the expense of longer work hours, which means less family time, less vacation time, and poorer quality of health insurance coverage. 

Autism - Past and Present

We are fortunate to experience autism not only in the US, but in this day and age.  Some thirty, forty years ago, it was commonly misdiagnosed with mental retardation and schizophrenia.  Autistic individuals, including very young children, were isolated and institutionalized.  It makes me absolutely furious and horrified at the type of misguided treatment endured by especially vulnerable individuals in our society.

Can you imagine being a parent back at that primitive (comparatively speaking) time, having a psychiatrist pressure you to institutionalize your child?  Imagine how much tougher it was on parents back then.  Moreover, it was all too common to cast blame on the child's mother.  Yes, that was done too - when in doubt, place guilt on a mother, as if mothers weren't going through enough heartache already.

Even though autism has been around for a while, in this sense, it feels like a fairly new field.  There is still so much to discover - so many unanswered questions.  We are hearing more and more about it possibly because it is being diagnosed more accurately now, and therefore, more adequate therapy is being provided.

ABA therapy, (Applied Behavioral Analysis) which has been scientifically proven to help individuals living with autism, is thankfully covered by military insurance.  Out of pocket, it runs an astronomical $3000 per month in the US!  Research repeatedly points to the two main components being environmental and genetic factors.  It is for the most part though, still a mystery, even though our family and other autism families across the globe, live with it 24/7.

Alex and Max

Tick Tock Clicks the Clock

In my post, 1-2-3 And Nobody's Talking, I share about our journey with all three kids learning to speak.  The twins had different issues than Jake; they were naturally more on a similar time frame with each other in their language development.  Over the past few months, they have well surpassed their older sibling.  While we are absolutely thrilled, delighted, and rejoice in all of the progress that they've made, this has been bitter-sweet for us in one respect.  It sets in the reality of Jake's developmental delays even more.

This is the reminder that we are at a race against the clock.  The clock is ticking, and we need to equip our son with skills and tools to help him lead a fulfilling life.  Whether we consciously think it or not, it is always an underlying pressure.  Tick tock; there is only so much that we can do at any given point.  The rest?  The rest is letting nature take it's course.  How do we know when to take a back seat in this learning process?

I have those days where this reality hits home pretty hard for me.  It is not easy not to take it to heart, but I try to think about the many positive things that are happening in Jake's life, and the ongoing progress that he is making at his own pace.  Doing this, is like shifting into another gear, in a way, and selecting the right way to think about it all.  Our thoughts are a powerful thing.  It is so important to keep positive and encouraging, because our children depend on this kind of energy from us - they depend on our hopeful spirit and loving heart.

My son Max, is so in tuned to what others are feeling.  Just the other day, when we were sitting at the kitchen table and I wasn't feeling well, he asked me "Mom, why are you sad?" He thought that I was sad because I was quiet for what he deemed of as too long.  His precious heart just wanted to make sure that I was doing okay.  That was a little reminder for me, of how much our kids feed off of our energy.

We choose to take a realistic approach to accepting where Jake is at any given point in his development.  He is such a wonderful, smart, sweet, gentle boy with a kind spirit.  His smile just makes your heart melt and his words are music to my ears.  Keeping things in perspective though, we have no delusions of autism being a life-long condition.  We are in it for the marathon and not the sprint.  Therefore, we have to pace ourselves for the long haul. 

This is why all of Jake's small successes are a big, no, a huge deal for us.  The other morning, for example, Alex told Jake "I love you," and he answered back "I love you too."  He had never done that before!  Typically, he would repeat the words "I love you" back, or "I love you, please."  He would often tag a "please" at the end of many of his phrases.  Saying something in the correct and functional way is always exciting for us to hear; It is a little special blessing to our day.

Dad and son at a football game - every outing is a learning opportunity

The ABC's of ABA

Jake's speech issues are directly linked to his autism and global developmental delays.  He is now blurring words together to the point where it's hard to understand what he's saying part of the time.  When he does speak coherently, and we don't expect it, we then make a big deal about how awesome that was.  We'll give him lots of reinforcements: complimenting, tickling and hugging, and of course, give him whatever he may be requesting at the time.

To be more specific, he was already at a point where he was speaking more clearly, using up to 5 - 6 word sentences (one sentence at a pop).  He had previously gone through a several month stage of (for lack of a better word) grunting out his words.  This, if you can imagine, is disheartening to see, as he's made a lot of progress already.  This can feel like a step back.

As I've previously mentioned in an earlier post, with Jake's development, it's two steps forward, one step back.  We just have to hang in there emotionally during the step back time, because all of the steps collectively, are a part of the larger learning process - not just for him, but for us, his parents, as well.  Don't give up hope when your child takes a step back - this is not uncommon with autism.

Through the guidance of our BCBA, (Board Certified Behavior Analyst) we work on this by withholding things that Jake wants, until he says a word/phrase correctly (without grunting it out or blurring words together).  This is what in ABA speak is called  a motivator.  For example, if Jake wants a snack or his IPad, we insist that he requests coherently before giving him his desired object.  He can do it, he just has to be motivated to get what he wants.

This principle, pretty much goes against every parent's natural instinct of unconditional love, of giving their child what he wants, and not withholding it.  Much of the ABA principles are completely unnatural for a parent to perform.  It's almost like learning another language for us.  We have had to become fairly fluent in ABA in order to facilitate learning and help our child around the clock, when therapists are not around. 

The concept of a child having to be motivated to perform a request, should not be confused with laziness.  Speech and social aspects are the two main deficits in autism - "the big-hitters".  What comes naturally to a neuro-typical child, like easily requesting a desired object, does not necessarily come naturally to a child with autism.  Basically, different wiring in the brain causes simple things to not be so simple here.

By reinforcing ABA therapy principles, we are able to teach our child how to perform an action.  That one action, (to an inexperienced observer) which may look like it came naturally to Jake, probably took many many repetitions to achieve that "simple" result. 

The lesson here is, 
don't take anything your child does for granted, 

because that simple thing that you see your child doing daily, 

may be much more difficult
 for the child that lives right next door.

Miriam and Max playing in the back yard

Double Time

For the twins, it was initially a speech delay (meaning their speech development was behind that of their peers).  While they have caught up in their vocabulary, they now need some work on articulation.   By the summer of 2012, they were catching up verbally, so we started phasing them out of speech therapy.  While they had caught up language wise since then, they have recently showed recurring as well as new articulation issues in their re-evaluation.

I wondered and asked if these type of issues were age-appropriate, and whether they would resolve themselves over time.  The therapist did not think so, and wanted to address these issues on a regular basis with them.  It's not a scary thing for me, as it was early on.  Back then, they weren't speaking at all (by the age of 15 months), and we feared possible special needs.

Over time, we realized that there weren't special needs involved, other then what I refer to as a "pure Vanilla" speech delay.  This time, we can approach it with a lighter mindset.  They will go once a week to their back-to-back half hour speech sessions, and we will reinforce what's necessary back home.  We are probably looking at several months to a year's time frame. 

Gratitude

You will never hear me tell a younger parent that "once they start talking, they don't stop, and you just want them to be quiet for a little while."  I love the sound of my children's voices and all of the things that they say, even when they are being obstinate.  I still love having them verbalize their feelings, and I mostly try to keep my giggle on the inside, as I find (most of) it very cute.

Having them be where they are today, I take as a blessing with open arms and a thankful heart.  When I keep things in perspective, I am more inclined to be appreciative of how far all three kids have come.  The same holds true for how far Alex and I have come in modifying our parenting approach and adapting to the challenges that we have faced along the way. 

One afternoon, I sat in the courtyard garden of Baptist East Hospital, where all three of our kids go for speech therapy.  I go to the courtyard when it's not too hot and humid as it typically is in the deep South on a summer day.  Catching a quiet moment of solitude and reflection, out of the corner of my eye, I spotted a perfectly blooming rose.

Within that one passing glimpse, this one rose captured all of the beauty in our family's journey.  It was as if the thorns on its stem represented the parents that had to grow a thicker skin, in order to undergo the daily in's and out's of life with autism and speech delays.  They are the protectors, advocates and nurturers of the beautiful flower head, the young child that blooms and grows, reaching his full blooming potential when tended to with care and with love.

That summer's day, that one rose had a very personal meaning for me.  It represented a symbol of hope; and without hope, we couldn't have possibly come as far as we have today.  Our inner thoughts are an incredibly powerful thing.  They affect what we say and how we respond to others.

With this message I convey to you to never give up hope, your inner fire, your inner flame.  Find meaning in the little things that can inspire, like the rose did for me.  Life with special needs can sometimes seem like an uphill battle, but you have to push through those moments of doubt and weakness and stay the course for your family.  It is with hope for the future, and gratitude for all that we have been through at this point in our lives, that we can keep climbing.  The key, is to do so without losing sight of where we are headed, and all of the beauty that is yet to greet us on our path.  We have yet to experience all of the high points of this uncharted landscape.

The Perfect Rose - Montgomery, Alabama

Visit my blog:  

Lily and the Roses ~ 

Creativity with Autism, Twins and Military Adventures 

http://lilybrose1948.blogspot.com

Leave me a comment if you find any of my posts meaningful to you.  Feel free to share posts with your friends to help us raise autism awareness and acceptance.

 

Visit my other blog: 

Creationlily.blogspot.com 

Where I display 

my artwork, music compositions and travel photos 

Stop by and share posts with your friends

Creationlily