Tag Archives: family

push and pull

I’ve been pretty silent here on the blog lately because I’m having problems deciding what is appropriate to share.  Quite honestly, right now, I’m having more issues navigating life with my 16 year old “typical” daughter than I am with my 13 year old autistic daughter or 9 year old son.  And because my oldest is 16, the issues I’m dealing with are a lot more complicated than potty training or sleeping through the night.  I would have no problems sharing that kind of information here.  But the issues I’m trying to cope with are more interpersonal – my relationship with my daughter, her relationship with me – issues of independence and control.

It’s not that I haven’t wanted to write.  Believe me, there have been moments recently where I’ve wanted to lay down a blazing rant, but even in my anger and frustration I still want to protect my daughter’s privacy.  She didn’t ask to have her life chronicled in a blog.  I’m also fully aware that even as I stand tall in self-righteous indignation, I am only seeing my side of the story – or there are times when I can see her side, but think it’s completely ridiculous, or see her side and feel badly for her as a teenager wanting to be older.  I know what it’s like to want to be free from parental control and rules.

One of the HUGE differences between my daughter and me is that I grew up in an abusive home, and actual rebelling was NOT a realistic option for me.  I was brought up not able to openly question or disagree with my parents, especially my father.  Indeed, I grew up with a lot of fear.  I didn’t want that for my children.  The result?  My daughter feels perfectly comfortable disagreeing with and questioning me to my face (and my husband’s face too while we’re at it).  I love that and am SO uncomfortable with it at the same time.

She has always been this way, but since she turned sixteen back in October, there has been a more dramatic shift.  She somehow thinks that sixteen is a license to absolute freedom and autonomy.  Well, not in my house.  I never (to my knowledge) gave her any impression that once she turned sixteen she would be free to do whatever she pleased with whomever she pleased.  So there has been considerable pulling and pushing in the past few months as she has tested the limits.  For example, she can be angry, argue and even yell at me, but on New Year’s Eve she started hurling personal attacks at me, and THAT was unacceptable.  She got grounded for the first time in her life.

I recognize the need to give her more freedom as she shows us that she can handle it.  She gets very good grades and overall has a good head on her shoulders.  But like any normal teenager, her capacity to sense danger is limited if non-existent.  I’m afraid every time she goes out the door and gets in a car with friends (many of her friends are in the next grade up and have their driver’s licenses already – she is still learning).  Isn’t the fact I let her drive in a car with friends to the mall (or so she says) proof that I’m not an overbearing mother?

But the fear is almost overwhelming.  I’m afraid every time she goes to a friend’s house, every time she gets in a car and drives off…  I have set certain rules for those things that I think are reasonable.  But kids will sometimes be kids and work around those rules or lie outright.  I know she doesn’t tell me everything, and I don’t expect that she will.  I can only hope the lies she tells me (or the things she doesn’t tell me) aren’t ones that will endanger her safety.  Perhaps that is my biggest fear.  And there’s not a whole lot I can do about it.

I think my job is to balance my fear with her freedom.  There are times when I have to “suck it up” and let her go, to stifle that voice inside of me that’s screaming “NO!  Don’t you leave this house!”  But there are also times when I need to pay attention to that voice, trust it, and let that voice come out.  But dang it, there’s no rhyme or reason for when to listen to that voice and when stifle it.  Flying by the seat of your pants IS NOT EASY OR FUN.

I had high blood pressure before this.  I think I may need to “up” the dosage on my medication.  I’ve got two and a half years before she graduates from high school.  Then, when she’s living on her own, I’m sure I’ll enter a new kind of hell.  Pray for me please!

Thanksgiving

Today in the United States we celebrate a national holiday called Thanksgiving.  It’s a day to stop and remember to be grateful – grateful as a nation for our freedoms, and grateful as individuals.  There’s been A LOT of debate about that “national” part of it recently, with hysteria in some circles over refugees, but other than asserting that our national history dictates we MUST welcome refugees, I don’t want to talk about that now.  (Just wanted you to know where I stood.)

In this space, right now, I would like to share the things for which I am thankful.  It’s an important thing to do once in a while, because if we aren’t conscious about naming the things we’re thankful for, we can either 1) forget, or 2) take them for granted.  Naming those things helps keep us grounded, and in the chaotic world in which we live that is certainly important.

I am thankful for my ever-patient husband.  We celebrated our 20th wedding anniversary this year.  As with any couple who have been together that long, we’ve been through a lot together.  We’ve had bumpy patches – we still do.  There are days we don’t like each other very much; days where conversation is strained; days where marriage feels HEAVY.  I am not an easy person to live with – I require too much time alone, I keep too much to myself.  I am SO thankful that he accepts me, and pushes me out of my solitude (even when I push back).  He loves me, and that tells you A LOT about his character.  I’m a lucky woman.

I am thankful for my older daughter, now sixteen.  She is pushing way too many buttons for me to even mention here.  She reminds me of myself, yet she is a person I never was.  I am struggling mightily right now (along with my husband) to strike the balance between protecting her (from others and herself) and giving her the freedom to be herself and even to make mistakes from which to learn.  I feel like I’m walking a tightrope with no net.  It’s more frightening than I ever could’ve imagined.  As she gets closer to legal independence the more serious this tightrope walk gets.  Dang.  But she is AMAZING.  She is forging her own path, making her own way.  She is smart, funny, loyal, passionate, and she is (and will be) a tremendous gift to the world.

I am thankful for my younger daughter, who next month will officially become a teenager.  With her autism she has overcome in her almost thirteen years more than some people have been through in a lifetime.  She works SO hard everyday.  Her teachers and my husband and I have worked SO hard with her.  And that hard work is paying off.  A few months ago she made the leap from an autism focused program, to a district special education classroom!  We are all so proud of her.  She is friendly and cheerful, wanting to make connections with people.  She wants to be a teacher or a fashion designer.  I’m not sure if either of those things will/can happen, but whatever she does she brings light with her.

I am thankful for my son, nine.  He still loves to hug his mama.  He still loves to cuddle.  Although he can very well go to sleep by himself, he still likes me to sit with him while he does – and I don’t mind. He draws better at nine than I do at almost 50!  He has his struggles being at the end of the “child” line in the house.  He has his struggles being a boy that likes to play with dolls (shhh… don’t tell his friends).  He is smart, sensitive, creative and energetic and I can’t wait to see how he continues to grow.

I am thankful for my online community, which includes all of you who read this.  Those of you who follow me through WordPress or on Twitter have given me a life-giving creative and supportive outlet for all my musings.  The various camps I hop between:  autism, parenthood, mental health, and faith have been true lifesavers – keeping me from feeling isolated and alone – and not just alone but from the feeling like I am in the only one in world going through some of this stuff!  I am so incredibly thankful for you – you really have no idea…

I am thankful for the people in my past – the ones who held me and even the ones who hurt me.  They are all part of the person I am today, and for the most part I like myself.  I am thankful for the people in my present.  I am thankful for the country in which I live.  It is most certainly not perfect, and right now my level of frustration if pretty high.  I know that there are people within our borders who do not have the same level of freedom I do, even if we claim it on paper.  I know there are people who have even more freedom than me.  I promise to do everything I can to point out the flaws when I see them, and celebrate the successes when we have them.

I am thankful first of all, most of all, for my faith.  I can’t put it neatly into one paragraph, but without faith, the family above never would’ve come into being.  My faith grounds me, keeps me humble, lifts me up, pushes me, gives me strength.  Faith is the beginning of the person I am and the person I am becoming – a journey not a destination.

Enough about me.  What are you thankful for today – and why?  May you have a wonderful Thanksgiving.  And for those who struggle with these family related holidays – remember family isn’t just blood.  Family is the people who love you and look out for you and push you and protect you and laugh with you and cry with you.  (just my 2 cents…)

parades

I’m generally not the kind of parent who cries over my kids getting older.  I didn’t feel sad on my firstborn’s first day of preschool, or her first day of kindergarten.  Truth be told, I was actually kind of glad.  When she started preschool my belly was big with baby #2, and I needed some time a few days a week to keep sane.  When she started kindergarten I had a special needs toddler and baby #3 on the way, so yeah.  It worked well, because she was a very independent child, and rather than clinging and crying for me at these milestones, she just said, “See you later mommy,” and walked away.

Recently my husband and I went out to lunch and we saw a young couple at another table with a baby in a rear-facing car seat (you know the kind you can snap in and out of the car that doubles as a carrier). At some point in our time together he pointed at them and said, “Don’t you miss those days?”  My response, “Hell no.”  I’m so happy to be done with car seats, diapers, potty training; done with talking to my kids in that distinctive “grown-up-to-little-person” tone of voice.  I have enjoyed my children more as they have gotten older, as I can share more ideas and experiences with them, have more complex conversations with them, and don’t have to worry about baby-proofing or having breakables out and about the house.  But every once in a while, something will come along and my response surprises me.  One of those things happened the other day.

On Friday, my son’s school had their annual Halloween parade.  All the kids in his K-4 school march around the school in their costumes while a loving crowd cheers them on.  Right before my husband and I left home to go watch the parade, I realized this would be our second-to-the-last Halloween parade EVER.  He’s in third grade now, and next year when he’s in fourth grade – that will be IT – because the middle school doesn’t have a parade.  I was shocked by how sad I felt that after next year all our kids will have aged out of this major ritual.  I’m sure he’ll still dress up and trick-or-treat, but the parade will be a thing of the past.

I find that these moments of grieving their childhoods hit me when I least expect it.  It’s not the obvious “big” things that get to me – the first day of school, first sleepovers, first missing tooth.  It’s the things I would never think of, like the way they might turn towards me to say something and suddenly look “different” than the day before, or a Halloween parade.  You never know when it’ll hit you – but when it does you just have to roll with it – the conundrum of being a parent – practically from the moment they’re born, you start the process of letting them go.

my ninja warrior

my ninja warrior

autism on vacation

My family spent the last two weeks of August traveling around the southwestern part of the United States.  It was an “adventure” to say the least.  Traveling and sharing ONE hotel room with a husband three children (ages 9 to almost 16) is challenging.  My middle child, a daughter, has autism, and that greatly multiplies the challenges.

my kids and our friends' daughter at the Grand Canyon

my kids and our friends’ daughter at the Grand Canyon

We never could have imagined taking this trip just one year ago.  Even taking it this year was difficult enough.  I am grateful that my autistic daughter is relatively high functioning.  I am grateful for all the progress she has made in the past few years.  Even so, there were times that I reached my limit.  Thankfully we were also traveling with friends, so they were able to help take up some of the slack when I needed space.

Most autistic people need structure – a routine. It gives them a sense of security in knowing what’s expected of them, but also what to expect from their surroundings.  Actually I think the same is true for ALL of us, but with autistic people it’s even more important.  My daughter is no exception.  When she is away from familiar surroundings and routines, some of her “unique” behaviors become even more prominent.

  • Even on a good day her speaking voice is loud, we remind her several times a day to use an “indoor” voice, or to speak quieter.  The further along we got on this trip, the louder she became. Her baseline volume seemed to increase each day!
  • She hasn’t flapped since she was little, but she “examines” her hands sometimes, and will stroke her hair.  Not only did she play with her hair constantly, she also started stretching her arms out over her head (you know, like you do when you wake up in the morning) to “exercise.”  I think she was finding ways to physically release stress and excitement.  Perhaps we should’ve found a fidget to help her, but we never imagined we would need something like that since she hasn’t had one of those in years.
  • Her eye contact became increasingly worse as the trip wore on, and she became more clumsy than usual, ex. spilling drinks at dinner, dropping and BREAKING a souvenir our friends’ daughter had bought (luckily right after the purchase, so she was able to replace it immediately). My daughter became much more high maintenance around the table, needing help to cut food, constant reminders to chew with her mouth closed.  It didn’t help that we ate out for every meal and were trying different kinds of foods, although we were very careful to find places for her and my 9 year old son that served food they liked.
  • Speaking of which – – her CONSTANT focus on FOOD!  (The technical term is “perseveration.”) She was always asking, “What’s for lunch?” “What’s for dinner?”  Sometimes she asked about lunch right after we’d eaten breakfast, or asked about dinner right after lunch.  And she would also repeat the question.  She’d ask, “What’s for dinner,” we’d give her an answer, then an hour later she’d us again, and so on.
when we got to Las Vegas (short stop to fly home), she spent quite some time stimming on the view from our window

when we got to Las Vegas (short stop to fly home), she spent quite some time stimming on the view from our window

I realize all these behaviors are ways she was using to cope with the constant change in her environment, and not being able to anticipate what she would be seeing and where we were going.  But understanding the behaviors and being able to put up with them are two different things.  The regular stress of such a trip, dealing with her siblings, my husband (at times) and even with our friends PLUS her gave me moments of complete exasperation.

These moments when I hit my limit are not pretty.  I call them “mommy meltdowns.”  The tears flow and my nose runs and a headache soon follows.  I hate autism.  I hate my daughter for being who she is – then I hate myself for hating her and being angry, and I feel like the world’s WORST mother and human being for having those feelings. I also hate myself because I know there are many autism families who cope with much worse than we do.  AND THERE YOU HAVE IT – a full blown pity party and guilt trip rolled into one.  Like I said, not pretty.  And having a mommy meltdown (I actually had two on this trip) in front of friends, even good friends, adds embarrassment into the mix, which just made me feel UGLY.

I don’t mean to imply that we had an awful vacation.  It was wonderful to see our nation’s national parks and to enjoy time with friends.  The kids complained as kids do, but overall it was fine (although not something I’m in hurry to repeat).  But I am so very thankful to be home.  Thankful the kids have started back to school, thankful for the routine.  Thankful for my daughter’s routine, which gives her comfort.  And when she is comfortable, the rest of us, me especially, are a LOT more comfortable too. We may go on vacation, but autism NEVER does.


I’m no expert, just a mom who’s been in the autism camp for almost 13 years, and here are some tips for traveling with autism:

  1. If at all possible, plan a vacation in ONE place.  This is what we usually do.  Go to the beach and stay there.  Don’t be hotel hopping from one place to another like we did this year.  At first your lodgings will be strange, but after a day or two it will become more comfortable and everyone will relax a bit.
  2. Just accept it and don’t try to eat fancy or different.  My husband and our friends wanted to experience some of the foods of the culture, and I understood that.  And one night we did manage to get my daughter to try a simple burrito.  But autistic children are FAMOUS for being picky eaters. You live with it at home and you can’t expect it to be different on the road.  One night we separated and while the rest of the group ate sushi, I took my younger two kids to Pizza Hut. Less complaining, more actual eating, and it was cheaper too. Pick your battles.
  3. Bring their comfort objects.  This is a no-brainer, although the fear of losing said comfort objects may tempt you to leave them home.  Thankfully my daughter is approaching teen years and so her kindle is now her “thing.”  There was a time not too long ago when it was a bag filled with toys, and boy did we have to search before we left a place to make sure we had found EVERY single one of them.  Make a checklist of everything you bring for them, and check it off before you leave. That way you don’t forget.
  4. If you’re traveling to a place they’ve never been show them pictures.  Explain as much about the place as you can.  I wish we had done more of this.  My daughter had never heard of Arches National Park or Bryce Canyon.  She knew a bit what to expect at the Grand Canyon, but not many of the other places we went.  If she HAD known, perhaps her anxiety wouldn’t have been as high and she would have been calmer.
  5. Know what to do for yourself.  After my first mommy meltdown, I stayed up after everyone had gone to sleep and had some quiet time.  The next morning I got up early and had a heart to heart with my husband so that he knew what was going on and so I could give him concrete ways to help me that day.  For example, “I CANNOT sit next to her in the car today.”  (We were travelling in an 8 seat Suburban – 5 of us, 3 of our friends, NO spare room).  He and our friends made sure I had my space.  I also wrote in my journal EVERY day, which helps me sort through my feelings.

Traveling with autism isn’t easy, but with the right preparation, (a care plan in place for you AND your child), it IS doable.  And if you’re child is too severely affected to even think about a trip, then please, for YOUR sanity, sometimes “home” is the best place to be.  Take the money you would’ve spent going away and hire help to give you little breaks throughout the school break.

Vacation (yeah right…)

The blog has been pretty quiet lately.  For two weeks my family was on “vacation,” traveling non-stop in the western region of the United States.  We went to Phoenix, Sedona, Willams and Page, Arizona; then a stop in Colorado that included the famous “Four Corners” – the one place in the United States where four states meet in one spot.  then we had several stops in Utah before ending up in Las Vegas, Nevada, from which we flew home.

It was the first airplane rides for two of my children.  They were very excited, and I’m glad the flights didn’t disappoint them (although my son got a little queasy for part of the flight home).  I was especially glad for this since they weren’t excited about much else on the trip.  You see, this was no thrilling trip to Disney or any other exciting child-oriented attraction.  No trip to the beach to jump in the ocean.  We were going to experience some of our nation’s National Parks among other “historical” sites:  the Grand Canyon, Sunset Crater Volcano, Antelope Canyon (on Navajo Territory), Mesa Verde, Bryce Canyon and Zion.  Las Vegas at the end was just a means to get home, although we did a little sight seeing there too (just not the historical “natural” kind!).

The running joke for my kids was that we spent two weeks looking at “rocks.”  “Rocks” became known as another “R” word – something you did NOT say – something they did NOT want to hear!  You see, this trip was taken to cross an item off of my husband’s bucket list.  It was not their choice.  And they let him know it regularly and sometimes loudly.  Mostly things got loud in the mornings when we’d wake them up early and while rearranging the suitcases, go over our agenda for the day.  We NEVER unpacked. There were only two times we stayed in a hotel more than one night.  Exhausting for me and for them.

We managed to survive the trip, even having a few light-hearted moments for which I’m thankful.  We NEVER could have attempted something like this even one year ago with our youngest child and autistic middle child.  In that way it was a triumph!  To get through our agenda with three kids, the five us us sharing ONE hotel room (after another) for two weeks is a testament to our fortitude.  Right now the kids don’t want to talk about it.  They just want to forget it ever happened.  I hope that as the years roll on they’ll forget the monotony of “rocks” and come to appreciate the unique beauty of each place we saw, and the humor of our 21st century struggle to survive such a hardship!

“Hardship” is relative.  We experienced Native cave and cliff dwellings.  We heard from park rangers about the obstacles the Native people lived with every day and how they overcame them.  We heard from our Navajo guide in Antelope Canyon how the people hid in the Canyon to escape the march to reservations our government imposed on them, and how many never heard from family again.  We witnessed the poverty still so prevalent on the reservations today.  So when I say “the humor of our 21st century… hardship,” I DO mean “humor.”

One thing I have decided for certain, and told my husband very clearly – while I’m grateful for the trip and what I saw and what I learned, I am NOT doing anything like that again.  Not while we still have kids in tow.  NEVER.  It was way too stressful for me to get them up and packed and out every hotel room door every morning, and then hear them complain most of the time. That sounds like a school day to me, not a vacation!

Have you ever had a vacation like this?

worse, poorer, sickness

I don’t write about marriage very often, mostly out of respect for my husband’s privacy.  He didn’t sign up for this blogging stuff and is a more private person than me.  Also, the times when I’m most tempted to write about marriage are usually times I just want to rant about my husband’s faults and failures (of which he has many – as do I).  I’m either feeling slighted, taken for granted, or wronged in some way, and I want to state my case, not just to him, but to the world!  Now… while that would be tremendously satisfying in the short run, and garner me much tea and sympathy since you’d only be getting my side of the story, in the long run I believe it would spell disaster.  So I generally stay quiet here.

But there is something to be said for sharing that ALL marriages go through tough times, that no marriage is perfect, and that even the most consistently wonderful and nice people are capable of being mean, hurtful and passive-aggressive.  We all have unhealthy ways of “dealing” in our relationships.

I am NOT perfect.  For one thing, I learned early on in life to not express my “negative” feelings (or even know that I’m feeling them!).  You know what I mean.  Feelings like anger, disappointment or hurt – the bad ones.  Of course they’re not bad, they just ARE – but expressing those feelings is an invitation to conflict, and conflict is terrifying.  As a result, I’m not much of a talker.  My husband, on the other hand, thinks by talking.  One of his greatest frustrations with me is that he hardly knows what I’m thinking.  I am still a mystery to him, which is sometimes thrilling but other times downright infuriating.  One of my greatest frustrations with him is that I always know exactly what he’s thinking, even when I wish I didn’t.

Next month we will be married for T W E N T Y years.  For some people that may be a drop in the bucket, but for me twenty years is a LONG time to be working at something.  After twenty years you’d think we’d have each other and this “marriage thing” figured out.  Nope.  Not even close.  And it gets harder when you have children, because not only will you have the disagreements that normally crop up when two people try to live together, you’ll also have disagreements over parenting style/decisions – a new hard area for us as our oldest child is now deep in the pool of adolescence.

We’re still learning how to maneuver around one another – to know when to grant space/come close, when to push/comfort, when to talk/listen.  We’re often not on the same page which makes it difficult too – one of us needing space when the other wants to come close etc…  There are SO many ways to fail.  And so many times we do.  It’s amazing to me that we haven’t figured out better rules for disagreeing and for resolving our disagreements.  I mean, yes, we have certain basic ground rules – no physical violence, no shaming, as much as possible don’t be nasty in front of the kids, and unless it’s REALLY bad, even if we’re still angry, we will sleep in the same bed (that’s a huge hot button for me since my parents slept in separate rooms for years).  One of the good things about our relationship is that after a rough patch we often come together and talk about how we can do it better “the next time.”  Because there WILL be a next time.  Perfection is unattainable.  There is no perfect marriage, because there are no perfect people.

So why stay together?  Why exhaust ourselves working so damn hard at something we know we’ll never get completely right?  I can’t answer that for you – I can only answer for me.  For me it’s about love, but it’s also about commitment – not for the sake of the children, or what religion dictates – but the life we have built together.  It’s not always pretty but it’s ours.  We’ve been through A LOT, and for each battle we come through, that means we’ve just made it through even more.  Shared history is powerful.  And those vows we made when he and I stood at the altar and before God and our loved ones?  Yeah those.  The “worse, poorer, sickness” parts.  Marriage isn’t roses, candy and romantic walks on the beach every day.   True, it’s hard for a marriage to stay together without loving acts of kindness and tenderness – and if you find no happiness at all with your partner it may be time to free yourself (I know, I was divorced a long time ago) BUT… to expect sunshine all the time is just too much – too much pressure on you, your spouse AND the institution.  Again, no perfect marriage because no perfect people…

I’m writing this because I just had a really bad three days with my partner.  There were moments when I thought I was just too emotionally spent to break the ice, could see that both of us were “digging in,” and wondered how we’d figure out how to travel over this big bump in our relationship.  But the thaw has come, kindness is returning, and we’re talking, thank God.  Sometimes waiting is the key – waiting for those HUGE emotions to ebb – waiting and *showing up.

 

* I give credit where credit is due – for more on “showing up” you can read Glennon Melton at Momastery here –  she’s phenomenal).

siblings, part 2

A little refresher from part 1 (unless you want to read the WHOLE thing here) – I realized after 9 months of blogging that I hadn’t really discussed my children as autism siblings.  My autistic daughter (G) is my middle child.  My older daughter (E) is three years older, and my son (J) is three and a half years younger.  In part 1 I focused on E and her experiences, now I’ll focus on J.

By the time J was born we had already been through what was probably the roughest time in our lives with G.  Sure there were hard moments ahead, but by the time J joined us the realization that something wasn’t “right” with G had already passed, the in-home therapists had come and gone (because she had started school and got her therapies there), the doctor’s visits weren’t as frequent and the terrifying medical tests were over and had all come back negative.  Even though there were still many issues to confront, the most frightening ones were behind us.

J a few weeks old, see how I'm holding G's hands to control her?

J a few weeks old, see how I’m holding G’s hands to control her and the bassinet gated off?

Unlike our oldest, who had to adjust to a sibling and then adjust again to that sibling’s special needs, J has known nothing different in life.  He was born into it.  He’s learned to “go with the flow” from practically day one.  G LOVED him from the moment she met him in the hospital (actually she loves all babies, even still).  This was good and bad – of course we were happy that she loved him, but G loves ROUGHLY.  “Gentle” is an extremely difficult concept for her, even now (although she’s much better).  She was also having problems with biting and scratching people, not only as an outlet for frustration or anger, but to express excitement.  We had to make extra effort to protect J from her.  We rearranged the living room so that we could gate off the bassinet in a corner, and we found a “bug net” for his stroller to keep her hands away from him.  Eventually as he got older he learned how to protect himself but for years we had to be hyper-vigilant whenever the two of them were together.

They actually ended up being good playmates for each other.  Because G is developmentally behind her chronological age, for a while we even referred to the two of them as “the twins.”  They played with (or I should say “used”) the same toys and we even had to buy doubles for a lot because they would fight.  Around the time J turned six we started to notice him surpassing her in some areas.  That’s when he first started to notice something was different about his sister.  It took a while for the “noticing” to become verbal questioning, but that eventually came too.  And my husband and I had to find words, just like we did with his oldest sister, to explain that G was “different.”

The word “autism” only appeared in our house in common usage in the past year.  For the longest time G lived in ignorant bliss.  SHE didn’t know she was different, and my husband and I didn’t feel the need to point out something to her that she didn’t see.  But our oldest knew the word, and we ended up “giving” it to J too, so that he would have a name for what was different about his sister.  Then it was only a matter of time until we had that conversation with G too.  Now it flows easily.

getting sandy, 2009 (ages 6 and 3)

getting sandy, 2009 (ages 6 and 3)

J is 8 now and G is 11 1/2.  They still play together, although J takes the lead on most of the imaginative play.  G still likes to line up toys and play very simply, and sometimes J gets frustrated with her.  Occasionally you’ll hear him say, “I wish I didn’t have a sister with autism,” but you’ll also hear him say, “I wish I didn’t have a sister,” period, as in wishing he was an only child – mostly when he doesn’t want to share or when things aren’t going his way – very typical sibling stuff.  He knows there are things he does better than her, and for the most part he doesn’t “rub it in.”  There are times when he helps his big sister, opening a bag of snacks, or a door handle (fine motor stuff is really hard for her).  He helps me if I’m trying to get her to do something she doesn’t want to.  For example, she doesn’t like the bedtime routine, but has a meltdown if she’s not “first.”  So if she’s complaining about brushing her teeth, I’ll say, “Well, if you don’t want to then J can go first,” he smiles and she yells, “NO, I’ll do it!” and off she goes.  He knows the drill.

I don’t know how much longer they’ll play together, how long it will be before he moves beyond her completely in terms of the kinds of toys they play with or manner of play.  He has just started to get into video games, so it might begin there because as I said above, fine motor activities are very hard for her and she has NO interest in computers or video games.  I guess like with all things autism, we’ll cross that bridge when we get to it.

*Since he’s only going into second grade the issue of his “special” sister hasn’t come up at school yet, although at the beginning of each year I always fill in the teacher about our home situation in case he brings it up.