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.   

A Holiday Flame

Jake sitting behind the holiday candles on the 4th night of Hanukkah.

Dreidels

The holiday season approaches and swiftly passes in a whirlwind of festivities, traditions and family gatherings.  We start off with Thanksgiving and then Christmas, but for our family and other Jewish families across the globe, a little festival of lights known as Hanukkah, is the holiday in between the two.   For our family, the candlelight of the Hanukiah (the Hanukkah candle display consisting of nine candles) symbolizes so much more then a commemoration of the miracle of Hanukkah -- where the candle oil in the holy temple in Jerusalem lasted for eight nights, when it should have only lasted for one night.   

Hanukkah gelt - chocolate coins

For us, the miracle of Hanukkah and the candle that continued to last beyond expectation, symbolizes our burning flame of hope that stays lit twenty-four hours a day for our son, Jake.  It represents our perseverance in coping with autism and keeping the flame lit of hope to find a cure during our lifetime.  As we light a candle each night, we sing the traditional holiday blessings.  We eat the holiday foods of latkes (crispy potato pancakes) and sufganiot (a jelly filled deep fried pastry, similar to a donut), we play the spin the dreidel games (a four sided top with Hebrew characters on it and which has meaning in the game) with the kids, and give them Hanukkah gelt (chocolate filled gold coins).  

A display of hanukiot - the Hanukkah candle lights at our synagogue

An arts and crafts activity

Having three-year old twins and a son that lives with autism, has made it very difficult for us to make it to services on a regular basis.  By the time the weekend rolls around, we are totally wiped out, and going to services at this point means, for us as parents, that we would be chasing our active three most of the time and probably getting a lot of stares, while not getting much out of the service.  Since we don’t want to compete with the service to be the main attraction, we have decided to approach this endeavor in little baby steps.  

Hanukkah symbols

We decided that Alex or I would alternate taking one of the twins as a mother-daughter/father-son activity, and try to build up their tolerance to the service little by little.  Jake goes to Sunday school every week and the twins have a program called “Torah Tots” that meets once a month as well.  For Jake, being in the classroom has been a challenge (just as it has in public school) because of his special needs.  At this point, we are just happy to be able to expose him to Jewish culture, and whatever sinks in at this time is great by us. 

Hebrew alpha-bet hanging

Before I had kids I always thought that of course, they would be bilingual like me, with Hebrew and English.  However, after the challenges that our family has gone through with speech delays and therapy for all three kids, and for Jake the Autism and global developmental delays as well, I am now of the mindset that if they speak one language well – well, that’s good enough for me.  If they happen to pick up some Hebrew along the way, to any extent, then that’s just icing on the cake. 

 A lit hanukiah

The holidays can present some sort of challenge for everyone – whether it be quirky family dynamics, loss of a loved one, special needs, travel discomforts, financial strain, a need for solitude, or just the general holiday chaos.  

 Whatever your holiday challenges may be, and whether you celebrate holidays or not, 

I hope that you find that burning candle flame that holds your passion 

- whatever it is that brings meaning and fulfillment to your life, 

and a hope in your heart.   

~ Season’s greetings from the Rose family to yours. ~ 

A Holiday Flame was featured on Jews News' Facebook page on 13 December 2012
lilybrose1948.blogspot.co.il

and also on:

Military Special Needs Network on 7 December 2012
http://militaryspecialneedsnetwork.wordpress.com/2012/12/07/a-holiday-flame/

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Lily and the Roses ~ 

Creativity with Autism, Twins and Military Adventures 

http://lilybrose1948.blogspot.com

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