Tag Archives: siblings

what falls through the cracks

Parenthood is a daunting call.  Parenting any child is both mentally and physically exhuasting.  And when you have more than one child new energy is poured into creating and maintaining a balancing act – giving attention as equally as possible to each of your children so that no one feels slighted or neglected. When you have a special needs child, that balancing act becomes almost impossible to maneuver.

Alright, enough with the 2nd person intoduction…

I have had a very hard time balancing the needs of my three children given the extraordinary needs of my middle child, my daughter who has autism.  I think my oldest child, also a daughter, has probably suffered the most, since she was knocked off her only child pedestal and THEN had to cope with the birth of another sibling – so there were TWO children who needed my physical presence in very demanding ways.  Her age (7 when my 3rd child was born), her natural independent streak and the needs of her siblings made it hard for me to see when she needed me too.  She has often fallen through the cracks.  But that’s a post for another day…

My third and last child, my son, has had his share of falling through the cracks as well, albeit in different ways from his oldest sister.  Playdates have been hard because of inviting people into our sometimes chaotic home. With my oldest daughter having preschool friends BEFORE the birth of her sister, those friends were sensitized to our life almost as slowly as we were – as we discovered that our daughter was “different” so did they.  But with our son it’s been more like, “Hi, nice to meet you.  By the way if my daughter wants to sniff your hair, that’s just her autism saying hello.”  Alright, I’m not that blunt – and she doesn’t sniff hair anymore, but you get the point – with my oldest daughter’s friends it was a gradual process, with my son’s friends it’s more teaching them to swim by throwing them in the pool.  Not easy.

Another crack he’s fallen into is the “game crack.”  We loved playing games with our oldest, and she remembers.  With my son, playing a game is a rare thing because when he was younger (he’s 9 now) his sister would often walk up to the game board and knock it over, or EAT game pieces or scream and hit him or one of us – because she wanted attention or was just frustrated at not being able to play along because game playing is a higher cognitive skill than she was capable of.  Even though she is long past that kind of behavior and could probably play along with some of the games now, we got out of the habit, and so we have shelves with games gathering dust.   We’re trying, but it’s hard to break bad habits.

Another crack, and one that my husband and I are determined to remedy is the “bicycle crack.”  Both my husband and I were riding bikes without training wheels by the end of kindergarten.  My oldest daughter learned a bit later than that, but learned still, while her sister was safely strapped in a stroller.  We tried for a while to teach our autistic daughter to ride, but she was pretty hopeless, not able to coordinate balance and pedaling and breaking and speed.  So we stopped riding our bikes.  What were we to do, call a babysitter for her so we could go for a family ride – when we had so few people we could trust to babysit for her in the first place?  Our bikes gathered dust in the garage, just like our board games on the shelves.  With our son, bike riding rarely even came up as a topic of conversation, let alone a goal to work towards.

better late than never

better late than never

But we’ve realized that bike riding is a critical piece of the socializing puzzle for any kid, especially boys. It’s a way they hang out.  He has a school friend who lives down the hill from us and it’s a way they can be together without coming in the house.  And since my son isn’t very athletic at all, it’s a way they can connect that isn’t sport related (like “let’s play basketball!”).  It has fallen through the cracks for too long. It will end this summer.  We have set a goal.  And our son is motivated.

He’s doing well.  The other day when we had him out in the church parking lot he was able to stay up for about 10 seconds before falling.  My husband is taking him out again this afternoon and we’ll see what happens then…  fingers crossed!

So stuff falls through the cracks.  We can’t go back and “undo” it – but we can resolve to do better in the here and now and move forward.  So my son is learning how to ride a bike…


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.

siblings, part 1

A discussion starter on a facebook page about autism siblings made me realize I haven’t really shared that part of my family life since I started blogging 9 months ago.  I know I’ve written about my other children, especially my teenage daughter (God bless her!), but I haven’t written about their experience as autism siblings. My first reaction when I thought of a post like this was, “No way, it’s too much.  I could write a BOOK!”  Then I actually made myself sit down and write.  Well, it’s not quite a book, but it was too long for just one post (I like to keep my posts under 1,000 words so people like me have the time and energy to read them!).  So I’ve decided to post it in two installments.  Part one will focus on my oldest child as a sibling, then part two will focus on my youngest.

2004, E at 4.5yrs, G at 1.5yrs

2004, big sis “reads” to little sis (ages 4 and 1)

My autistic daughter, (G), is my middle child – my oldest, (E), is three years older than her, and my son (J) is three and a half years younger.  When E was younger she had the logical questions – Why is G different?, Why does G jump and flap like that?, Why won’t G talk?, Why do we have strangers (therapists) coming to our house?.  She went through periods of acting out to get attention because everyone in the house seemed so focused on G and not on her.  We figured out our own ways to explain to her, “Your sister’s brain works differently,” “G needs help because her muscles aren’t working the way they should,” and the acting out faded – and my husband and I made extra efforts to to give E the attention she deserved.  I KNOW there are times E “fell through the cracks” (and still does) but we do our best.

I think E has been shaped by autism in ways our younger son hasn’t, because she was alive (ages 3-7) for her sister’s younger years and was part of the journey to diagnosis – a journey filled with anxiety and fear that I know she saw in my husband and me.  In the process of the autism diagnosis, we also had mitochondrial disorder and epilepsy scares that involved overnight hospital stays and surgery – we went through A LOT, and she SAW a lot in our home with therapists coming and going (and the therapy always involved lots of crying on G’s part), but all that was over by the time our son was born.  I know a lot of oldest kids feel “knocked off a pedestal” when a younger sibling is born, but E went through much more than that.

It’s been hard on E at school.  There have been times when kids at school have called G a freak to E’s face.  When all you want to do is fit in, having a sibling who goes to a “different” school and has “special needs” makes you a target.  E’s participated in a sibling therapy group, which she HATED, but loved the once a month “just hang out” group they have at G’s school.  Unfortunately, the older siblings tend to drop out, and when E showed up a few times last year and was the oldest kid there, she stopped going too.  I wish she had other people to talk to about her experience.  I’ve tried to point her towards some online groups and people, but she wants no part of it.

Spring 2007

Spring 2007

There’s no such thing as a perfect person, and there have certainly been times when E has been downright mean to G, but then again they’re sisters and I think fighting, mean-ness  and teasing is part of any sibling relationship.  There have been times when I’ve had to intervene and tell E to “back off.”  But even though she can be tough on G, she is also VERY protective.  SHE can tease her G, but if anyone else does they better look out.  E has no patience or sympathy for anyone mistreating her little sister.  And there are times when they are just precious together.  G practically worships E – as an example, for Valentine’s Day G only made ONE card at school – was that card for Mommy or Daddy?  Nope.  She made her one Valentine’s Day card for her big sister.  And E appreciates it – she has that Valentine card displayed prominently in her bedroom.  When G had her choral concert at school, E did her make-up.  And last month when G got her first period ever (that will be another blog post!) E was absolutely AMAZING – so gentle, so patient, so comforting.

Now that she’s a teenager her questions are more complex.  E wonders, as does the rest of the world, what causes autism – whether it’s genetics or environment or some interaction of both.  A question that seems to be fading is if her little sister will ever be mainstreamed – it doesn’t look like that will ever happen.  She worries about her sister’s future, and wants to do her part in making sure her little sister doesn’t have to worry about anything.  As I said, she’s very protective.  She may have her moments (as do I!) but there is NO doubting her love and devotion to her little sister.

My oldest always roots for the underdog and goes out of her way to show kindness to those who appear on the margins.  She has had her own issues to deal with over the last few years and I’ve watched her struggle and fight and persevere.  In many ways she is older than her years.  She is one of the most awesome people I know.  I’m sure there are many things that contribute to her being this awesome person, and I know that her experience of her sister’s autism is one of them.

Next up, my son as an autism brother…