Tag Archives: growing up

World Autism Awareness Day, 2017

April 2nd is World Autism Awareness Day.  I announced it to my fourteen year old autistic daughter this morning as I woke her up for church.  In the past we have embraced this day as a day to ask questions about her autism and for us to celebrate the wonderful young woman she is.

Today was different.  Today she proclaims that she only has a “little problem” with autism and doesn’t want to talk about it or acknowledge it in any way.

I get it.  She is fourteen now, and although she is clearly emotionally younger than her chronological age, she IS starting to exhibit some pretty normal teenage behaviors – one of them being a desire to blend in, to not be seen as different.  Sometimes she can do this.  Any stranger looking at her in the store or on the street may not even know anything about her is different.  The “classic” autism behaviors that marked her out as a young child – the flapping, stimming, spinning, poor eye contact – are mostly gone from us even though at times her eye contact is still not the best.  The biggest issue she faces is her speech, but you wouldn’t know that unless you were trying to have a conversation with her.  And to meet her casually you wouldn’t know, unless you have a conversation, that academically she is well below her peers.

The struggle we face now is her believing that she can do things that we know she CANNOT do.  When she tried out for the lead in her middle school play, we KNEW she wasn’t capable of handling the role, but in consultation with the drama teacher, we let her try out so she could experience failure.  When she wanted to be on the volleyball team, despite being very uncoordinated and unathletic, we let her try out (in consultation with the volleyball coach), again so she could experience failure.  Wonderfully, the volleyball coach made her a team “manager” so that she could attend the games as a helper, and she loved it.

Last month she wanted to try out for the softball team, which again, seemed ridiculous since she is uncoordinated, unathletic, and hasn’t picked up a ball or bat since she played t-ball in her special ed program as a 1st or 2nd grader.  I was actually afraid she’d get hurt.  Girls at the 7th and 8th grade level throw and hit hard and when the ball comes at you, you need quick reflexes.  I explained to her as gently but as honestly as I could that I didn’t think trying out would be a good idea because she could get hurt, and that she would be competing against girls who had been playing for years.  She was NOT happy.

I am so grateful that she has come so far.  I am thankful that she is able to be in a special education classroom in a typical school, and for her many interactions with her typical peers.  I am thankful that she has a wonderful self-image.  I know from my older daughter (and from my own experience) that many adolescents suffer from a very low opinion of themselves, believing they’re ugly, stupid, fat, etc… and she has little to none of this.  But I AM concerned that this normal desire to “fit in,” indeed her BELIEF that she DOES fit in – even though she clearly has problems – will cause her pain.

Every mom wants to spare their kids pain if possible.  I feel the same about my other two children.  But my protectiveness of her is greater because her innocence is greater.  She is vulnerable and she doesn’t know it.  She may not want to remember World Autism Awareness Day, but I do, because I still see it in her even if she doesn’t.  And I still see the world as a scary place for her, and want the world to be “aware” of how far we still have to go until it isn’t.

The Santa thing

I remember when I “found out” about Santa.  I must have been about 9 or 10 years old.  My 17 year old daughter figured it out at around the same age as I did, and my 10 year old son has made some “remarks” about Santa, but hasn’t come right out and asked or made any declarations.  I think he wants to play along, thinking maybe he’ll get more stuff as long as he pretends (he’s smart like that, although it would NOT be a factor in our gift giving).  Anyway…

My middle child, my daughter with autism, will be 14 years old in a few days, is in 8th grade, and still (until tonight) believed in Santa.  Wholeheartedly.  Most people with autism (Autism Spectrum Disorder or ASD), are very literal thinkers, and my daughter is no exception.  But in certain areas, like Santa (and the Easter Bunny, tooth fairy etc…) she has been able to suspend that literal thinking.  Perhaps it’s because she is also cognitively delayed (very low IQ). I don’t know.

If she were in a special education school, surrounded by like minded peers, I would not have been concerned.  But while she is indeed in a special education class, that class is in a TYPICAL school, and she has homeroom, gym, art and music with typical peers. The closer we have gotten to Christmas, the more she’s been wondering aloud what Santa is going to bring her, and what she wants from Santa.  I know talking like this in groups of typical 8th graders is stigmatizing for her without her even knowing or understanding.  She’s “different” enough, I don’t want this to impact on her ability to socialize and be accepted by her peers.  So I resolved I would talk with her about it.  And I was nervous as hell.  I wanted to tell her the truth, but I wanted to tell her in such a way that she wouldn’t feel bad about basically being lied to all her life (and I know one autistic child in particular who had this very reaction). I wanted her to feel “grown up” in learning something special.  That’s the approach I took.

I told her I was going to share a special grown up secret with her now that she was going to be fourteen.  I talked about the historical figure of St. Nicholas (which our kids know about since we’re “churchy” people) and how after he died, people wanted to continue in his example of generosity, and even up to today parents enjoy being St. Nicholas for their children.  I then explained that her father and I were being Santa for her and her siblings in the spirit of St. Nicholas.  I infused this whole talk with excitement for her that she not only knew a special secret, but could be a part of “knowing” with all the other grown ups, but I also told her that knowing the secret was a serious thing.  I explained that now she was a part of keeping the magic and memory of St. Nicholas and Santa alive for little children, and that she must never tell the secret to little ones. She could even help be Santa now!

It seems to have gone over fine.  She didn’t cry.  She didn’t even frown.  I told her it was okay to be sad if that’s how she felt, and she said she felt “tiny tiny” sad, but mostly happy that she knew a grown up secret.  Then she asked about her little brother.  I told her I wasn’t sure about him, so that until I was sure, she should not say anything to him.  She seemed REALLY pleased about maybe knowing something that he didn’t!  (typical sibling stuff there!)

I never thought I would have to sit down and have this kind of conversation with one of my kids.  I always assumed they’d figure it out eventually.  But with autism, you can never assume anything.

co-parenting

My husband and I have been married for almost 22 years.  In this time we have known great highs and devastating lows.  We have known times of peace and times of anxiety and tension.  I think, by far, the greatest time of tension that we have experienced as a couple have been the past few years parenting our now 17 year old daughter.

Parenting an older adolescent is a whole different universe than parenting an infant, or toddler or young child.  The issues then are very much centered around physical safety:  baby-proofing, making sure they don’t run out in the street, or wander away from you at the mall.  Parenting an older teenager is about safety too, but the game is utterly different.  Instead of baby-proofing, you wonder if the group they’re with will be drinking or doing drugs.  Instead of keeping them from running in the street, you’re praying they don’t get an accident while they’re out with the car.  Instead of wandering away in a crowd, you’re terrified they (or someone they’re with) will do something incredibly stupid or dangerous (or both).

And instead of tucking them in at night, you’re worried about them picking the kind of major in college that will enable them to get a decent job.  Instead of tucking them in at night, you’re trying to prepare them to be without you.  To fly solo.  It’s about finding the balance between holding on too tight so that they’re unprepared, and letting go too quickly or at the “wrong” time so they crash.

I’m spending a lot of time feeling afraid.  But I think I’m coping better than my husband, who is just plain terrified.  Because of my childhood, I tend to err on the side of freedom, while he errs on the side of control.  As a result, we’ve had some pretty interesting disagreements and discussions over the past year or so.  As I said, there are times when the tension is THICK – times when I think he’s suffocating her, and he thinks I’m irresponsible.

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I never expected to be fighting over differing parenting styles.  It’s been a bit of a shock and very disconcerting.  And of course the “truth,” the “right” way to go, is somewhere in between.  But there’s no formula for figuring out where that happy middle is.  It all feels like such a roll of the dice – which only adds to my fear and his terror.

I find myself sometimes wishing I didn’t have to co-parent.  It would be so much easier if I didn’t need to consult my husband or compromise or admit when I’m wrong.  But I know that’s just fantasizing to relieve the tension.  I know single parents.  And I know single parenting has its own tensions and fears and is HARD.   I knew parenting would be hard, but I had no idea HOW hard, and no idea the toll it could take on a relationship.  When divorce statistics are thrown around, you always hear about money being a source of stress, but I wonder how much having an adolescent figures into divorce rates?  Not that we’re going that route BELIEVE ME – I LOVE my husband, and like I said, my fantasy of being a solo parent is just that – a fantasy to escape the hard work of dialogue, understanding, and compromise. “Opposites attract” sounds nice, but the reality of it can be… complicated.

I never thought about parenting styles when I had children.  And I guess you cannot possibly know what kind of parent you will be to your adolescents until you get there.  It’s not something I think people generally talk about when they’re falling in love and think about having children together.  I know my husband and I certainly didn’t talk about how we would handle our hypothetical teenage daughter wanting to drive an hour to a hypothetical concert with her friends.  And I know that how I act in the reality is often different than I ever imagined it.

My daughter has been in therapy since the spring, and I think her therapist is excellent.  One of the reasons I feel this way is because she’s spending time with all three of us: my daughter alone, my daughter and I, my daughter and my husband, and my husband and myself.  She’s guiding us through some of our confusion and fear and tension in parenting.  I don’t think we’ll be able to work our fears away (I don’t think that’s possible for anyone who takes parenting seriously), but hopefully we’ll cope with them a little better, and also be able to work through some of the tension in our parenting styles. Less tension between the two of us around the last years our daughter is home would be a good thing.

Anyone else out there go through this?

 

you’ve come a long way baby

Sometimes in the midst of day to day life we lose sight of the big picture.  We focus on the annoyances, and how far we’ve yet to go.  I know I can get caught up in that.  It’s hard to relish the present when you look at the expanse of the road ahead.  But sometimes, if we’re lucky, we pay enough attention to realize how far we’ve COME, and that’s amazing because it can give us renewed energy to keep on keeping on.

This happened today.  I brought my 13 year old autistic daughter for her yearly physical.  We were seeing a new pediatrician in the office, so it took the doctor a little while to develop her own relationship with my daughter.  I go to a practice that has a good number of special kids, so it didn’t worry me.  The physical exam and her conversation with my daughter (with a little translating from me) went well.  I appreciated that even when my daughter was having a hard time explaining herself the doctor kept her gaze fixed on my girl.  Any special needs parent will tell you how disheartening it is when people look past our kids to us as if our kids aren’t even in the room.  Anyway…

Before we left my daughter was going to get a shot.  I didn’t tell her beforehand because I didn’t want to stress her unnecessarily, and the minute I did tell her the tears started welling up and I felt a sense of panic.  The last time she needed a shot (2 years ago) it took THREE of us to hold her down while the nurse gave her the needle.  I wasn’t sure WHAT would happen today.  She’s made so much progress overall, but I could see panic in HER eyes at the same time as I was feeling it in my own body.

I was doing my best to reassure her.  “You can do this!  One, two three and it will be over.”  “It’ll only hurt for a minute I promise.”  “Take a deep breath, it’s ok.”

She was trying SO hard not to sob and yell – I could see it in her face as it contorted and the tears came.  This could be very bad.  If two years ago it took three of us to hold her down, what would happen NOW?  She’s two years older and two years bigger – if she fought us it could get ugly.  I don’t want to torture my kid.

Then something truly amazing happened.

She said to me, “My friend at school said, ‘If you have to get a shot hug your parent tight and it won’t hurt so bad.’  Mommy, will you hug me tight?

(I almost choked.  You could’ve knocked me over with a feather.  But I quickly caught myself because if I started to cry it might scare her, even though they would’ve been happy tears.)

“Yes honey, I will hug you as tight as I can.”

Then the nurse came in with the needle and my girl cried and hugged me and I held her with all I had. And it was over one, two, three.  Just me, my girl and the nurse.

We let go, both of us smiled the BIGGEST smiles, I gave her a high-five and promised her her favorite take out dinner as a reward for being so brave.

Two years ago it took THREE of us to hold her down.  Today she just needed a hug.

You’ve come a LONG way baby.  Yes, you have.

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!

new problems

So, for those of you who may not know, my twelve (soon to be thirteen) year old daughter with autism started at a new school in September.  All her educational life from age three to twelve was spent in the same program specifically designed for autistic children.  It was a WONDERFUL program, but she was doing so well and progressed so far that she didn’t need their intense services anymore.  We were scared to make the change, to leave the nest, but we knew it was time because she was really starting to be held back from blossoming where she was.

She has transitioned marvelously in her new school.  It’s a regular school, but she is in a self-contained special education classroom, with inclusion for art, music and gym.  She goes to homeroom with other “typical” children in her grade and has her inclusion classes with those same kids, so she’s finally making a few casual friends outside her special ed group.  She has girls to chat and giggle and have lunch with which has been really nice for her. She is very happy.

HOWEVER…

In this new school, just because she is in a self-contained special education classroom no longer means that her classmates all have autism.  I don’t know what the problems are for any of the other kids in her class.  I don’t mind that BUT…

Two of her new girlfriends (in her class) are MUCH more tech savvy than she is.  They want to go on Oovoo and video chat, which is okay with me, but I had to help my daughter get their usernames and add them as friends, and even how to use it (which I have to repeat with her every time).  She really doesn’t “get” that stuff.  They want to call and talk on the phone, which, again is okay with me, but last week one of the girls called at 10:30PM – on a school night!  I had to explain to this girl that my daughter had gone to bed, then the next day tell my daughter that she had to tell her friend NO calling after 9pm.  Then my daughter asks if she can go with these girls to “hang out” at the local plaza after school.  (Um… NO WAY.  My daughter barely knows her address and wouldn’t have the vaguest worry if a stranger came up to her and offered her a ride.  Me, let her go unsupervised with these girls to a plaza?  NOT ON THIS GOD’S EARTH.)  But she says they go there to hang out or shop, and at a local park too.  And they all have cell phones, which I confirmed with the teacher (she may not be able to share personal/educational information about these girls with me for privacy reasons, but she did confirm the cell phone thing).  We haven’t gotten my daughter a cell phone yet because:

  1. she BARELY knows how to use a regular landline phone and
  2. she has never been without direct adult supervision so has never needed one

It seems to me these girls are much more “normal” or “advanced” (for lack of better terms) than my daughter (although I wasn’t letting my twelve year old “typical” daughter go hang out at the local shopping plaza either).  Clearly they are more independent.  I wonder if their problems are simply academic and not mainly developmental (which I can’t know for privacy reasons).  This has left me a little scared and confused and worried.  I WANT her to have friends.  I WANT her to integrate as best as she can with other kids her age.  But her ability to be independent is limited.  Her ability to understand the clever deception of a stranger trying to take advantage of her is NON-EXISTENT.  Her ability to perceive danger is limited to only the very obvious.  She is extremely trusting.  She has very little understanding of money and so shopping with the girls would be a disaster.

I did offer to go to this plaza WITH her and “hang back” and watch out for her while she’s there with her friends one day, and she seemed okay with that, but then it rained and they didn’t go, and they haven’t set up a new time.  We have also talked about getting her a cell phone for Christmas (she is actually BEGGING for one).  Nothing fancy, just enough that she can make calls, texts and have an app or two.

I thought it would get easier as she progressed in her development, but the truth is, right now, that it’s feeling much harder and much scarier.  Autism, once again, is keeping us on our toes…

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