Tag Archives: independence

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.

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…

The Prom

About two months ago I picked up my autistic daughter from school as usual – but her behavior when she got in the car was very UNusual.  She was almost bouncing in her seat.  She told me there was a permission slip in her folder.  I had never seen her so excited about a permission slip before – but I would soon find out this was no ordinary permission slip – it was a VERY BIG DEAL.  As we pulled out of the school parking lot she explained it all to me: “Mommy, we’re going to have a prom!  It’s going to be so much fun!  I have to buy a dress!  And we’re going to dance and have dinner!”

A young man at our local high school who volunteers his time mentoring “special needs” classmates on the track team decided they needed a prom and decided to do something about it.  (Bravo for him!) Under the guidance of my daughter’s special education autism program, he organized a “for real” PROM. It was held at a local country club, with a DJ, a photo booth and a hired “official” photographer.  Staff from the program would be there as guides and chaperones, along with “typical” kids from the high school who wanted to help.  (Don’t ask me how it was paid for – I don’t know.  All I know is that it didn’t cost us a penny!)

My daughter doesn’t have a lot of opportunities to socialize outside of immediate family and church.  Her biggest obstacle to friendship has always been proximity.  Her school program includes children from five surrounding towns and even farther away – none of her classmates live near us – so hanging out with her peers is a rarity.  This would be a whole night of hanging out!  Oh, and eating and dancing – two of her favorite things to do!  I was concerned about the eating part since she’s so picky, but the planners were smart and made it a buffet with mostly kid-friendly food.  She was set!

She couldn’t stop talking about it – FOR TWO MONTHS.  At times I wanted to put earplugs in my ears, but mostly I was just overflowing with gratitude for this young man, who up until right before the dance even managed to stay anonymous!  During April vacation we all went to visit my mother and she and my daughter went out for a grandma/granddaughter shopping trip and bought THREE dresses!  Her excitement was palpable.  And I was excited for her.

The day of the dance she could hardly contain herself.  She showered when she got home from school and I did her hair (as much as she would let me).  I did her nails with her favorite magenta nailpolish, and her big sister did her makeup (I’m hopeless with makeup!).

IMG_01

When we got to the country club I was going to walk her in, but there was staff, along with the photographer, at the entrance, and she just got out of the car and said, “See you later mom!”  And I choked up a little.  Well, maybe a lot.

Mostly I am happy to see my kids growing up and getting more independent.  It’s frightening, and I wish I could protect them, but I’m not the kind of mom that wishes they could stay babies forever.  Nope.  A person might think I was choked up over my little girl growing up – but that’s not it at all.  Most autism parents spend a lot of time worrying about the future.   I am one of them.  I don’t know if my daughter will be able to live an independent life, or if she will always need some kind of supervision.  Her life is VERY different from that of other kids her age.  And even at this dance there was pretty intense supervision – for the kids that definitely needed it, and for kids like her who just need some guidance here and there.

But in that “See you later mom!” moment, she was going to a dance with her friends.  I didn’t have to worry if her behavior would be appropriate or if she would get teased without realizing it.  I didn’t have to worry about her having someone to sit with or talk to.  I didn’t have to worry.  That was HUGE. That’s what made me choke up.  She was going out, without me, and I didn’t have to worry.  

When I picked her up they were taking a group picture and getting ready for the last dance.  I was there to see it.  All “levels” of kids – “high” and “low” functioning – boys in suits and ties, girls in dresses – all having a blast.  There were funny hats, inflatable instruments to play, silly sunglasses and JOY.  Some danced, some just walked around with their air guitars or saxophones pretending to play. And it was all okay.  There was acceptance all around, and no worries.

IMG_0553_copy

my girl is in that circle, dancing her heart out!

This was the first time her program has ever done anything like this.  And I hope they do it again.  It meant the WORLD to my daughter, the world to me, and I know I’m not the only one who feels this way.  It was a priceless experience, and will be a treasured memory.

always bumpy road

I haven’t written about my autistic daughter lately because frankly, I’m having a hard time keeping up with her.  There’s been a whole lot of good, but a whole lot of annoying too.  I feel like my head is spinning.

On the good side:

  • She’s continuing to do great in school.  Not at grade level in anything, but making progress.
  • She’s starting to get the hang of using a calculator, which is something we hoped would happen since she’s abysmal at math.  She’s learning how to use it for basic math, but also for money values, which is huge since her concept of money is also pretty poor.
  • Her reading ability also continues to improve.  She LOVES to read!  She’s about three grades below grade level, but she’s independent and thoroughly enjoys it.
  • ALSO, (autism parents will completely get my joy at this), she’s been willing to eat many new foods!  Up till about three months ago this child would have TWO things for lunch:  pizza on “pizza Fridays” at school, and macaroni & cheese.  That was IT.  Now she’ll eat bagels with butter, ham sandwiches and turkey sandwiches – this from a girl who wouldn’t even touch BREAD a few months ago, let alone deli meat!
  • On a more intimate note, she’s also learned to manage her period in stride.  I barely know she has it – she takes care of it all by herself.
  • We got her a Kindle for Christmas, hoping she would finally take an interest in video games and doing a few things on the internet, and she’s becoming quite adept at “Subway Surfers” plus some other games as well.  Which is great not only for her reasoning skills, but also fine motor skills, which can be a problem for her.

I’m amazed and thrilled by all this!

However, accompanying all this wonderful amazing stuff is frustrating, annoying, patience-wearing-thin stuff.  We’ve hit “tweendom” with a force I can’t even describe.

  • She’s taken to announcing frequently and loudly, “I’m not a child anymore, I’m a TWEEN.”  Another favorite new phrase of hers, especially when I’m trying to get her up and out the door for school is, “Don’t treat me like a child!”
  • Her hair has to be “just so” before she leaves for school, and she won’t listen to me when I tell her she’s using too much hairspray – and she won’t let me help.
  • She’s started cursing (mostly getting that example from her big sister – who is usually careful to curse in the privacy of her bedroom with the door closed – but – we have thin walls!).  I wouldn’t have a problem with this overall, except she has yet to understand all the social rules that go along with it, like kids don’t generally swear in front of their parents, or teachers etc…
  • In other ways she is also becoming “mouthy” – attitude overload.  “Don’t tell me what to do,” “leave me alone,” “you’re not my boss” etc… and much louder than usual.  (Her voice has always been louder than “normal” and we always have to remind her to lower her voice, but it’s getting WORSE)
  • She’s getting very bossy.  For as much as she doesn’t want to be told what to do – she takes it upon herself to tell everyone else what to do!  She’s even injecting herself into my discipline of her siblings!
  • She’s also very judgmental.  She takes a shower every day.  God bless her.  I know a lot of autism parents who have a hard time getting their kids to bathe.  But when she finds out I skipped a day or two, (c’mon, I do my best!), she calls me DIRTY!  If we see someone smoking while we’re driving in our car she’ll say, “BAD ROLE MODEL.”  When she found out a friend of ours smoked a cigar once in a while, without a heartbeat she told him to his face that HE was a bad role model and that he was going to die from that!  Thank GOD we’re close friends!

I realize the above mentioned items are quite normal for a twelve year old (except for the last one – that’s an autism classic).  I’ve been through this before with my oldest – but autism is making it worse worse worse.  I could reason with my oldest:  “I’m treating you like a child because you’re acting like one,” and while she wouldn’t like it, at least she would get it.  My new tween-queen just keeps repeating these phrases whenever I ask her to do anything, or even if I’m doing something nice for her like pouring her a glass of water!

She’s learning the tween jargon, but she has NOT yet learned the social rules surrounding it, the social cues for when to speak up and when to stay quiet – or even the simplest of family rules like, if you want mom to do something for you be nice to her (my eight year old son is a master!).

At the next teacher conference I have to get some advice.  I mean, we DO correct her when she’s being rude, but that’s the patience-wearing-thin part – she’s not getting it.  I don’t even think she understands what rude looks and sounds like, even though I’m sure they’ve discussed it at school.

So with all the great progress she’s been making, the road is still bumpy.  Actually it’s riddled with potholes!  Then again, that’s autism…

 

Nobody warned me about the fear

There is NO time in parenthood when you can relax.  I’ve been at this for over 15 years now and every new experience just reinforces that sad truth.

My teenager had a horrible middle school experience.  I won’t go into great detail out of respect for her privacy, but it was utterly frightening to watch.  Everytime she left the house, or even when she closed herself in her room we were afraid.  More than once my husband and I almost pulled her out of the school, in fact asked her if we could PLEASE pull her out and either homeschool or get a tutor for her, but she refused.  She was miserable, despondent, hopeless, dark (and yes, she was receiving professional help).

fear photo

She graduated from 8th grade in June, and in September started at our regional high school.  Five towns combine into one high school, which means a whole new mix of kids, and a bigger student population.  Many people told us that she would find her groove at the high school and we prayed and prayed and prayed that would be true.

In the past few months we have had a new person living in our home.  She is HAPPY.  She has made many new friends.  She is confident.  She cares about her classes.  She cares about how she looks (and by this I mean she cares if she’s showered and brushed her hair, not what designer label she’s wearing).  She has a new boyfriend who seems really nice.  I’m thrilled for her.

fear imageBut I’m still afraid.  Before, I was seriously afraid about the possibility of suicide and self- destructive behavior.  I was afraid because she disliked herself, had few friends and no social life.  I’m SO SO SO thankful those fears are gone – but they have been traded for new ones.  Now that she has friends and “hangs out,” I fear adolescent group mentality and the propensity to make poor choices.  Fears of sex (not just of her having it, but of STD’s and pregnancy!), drugs, fears of her expanding freedom and that with her new social life she may find herself in a precarious situation and not realize it or know how to get out of it.  We’ve talked about all these things with her, and once or twice she has called me to pick her up from a situation in which she felt uncomfortable, but still, the social pressures for teenagers are enormous, and sometimes those pressures can override their instincts and common sense.

I naively thought that once my daughter was in a better place I would be able to relax.  Nobody warned me that fear would be a constant companion in my parenting journey.  Sometimes it feels paralyzing, overwhelming.  For the most part I’m able to manage the fear beast though.  I can’t let fear rule my parenting – what an awful experience that would be for both her and me!  I can’t seal her in bubble wrap.  It’s part of the cost of loving – this intense desire for the well-being of the one you love, the fierce protectiveness against all things that might cause your child harm physically, emotionally or spiritually.  It goes against every instinct to let go, yet it’s the one thing we must do.  She has to learn to live her life, and the only way she can do that is if my husband and I allow her increasing freedom.  That means letting her go, little by little.

These new set of fears seem more natural to me than the ones I had when she was in the depth of her depression and self-loathing.  They’re fears that go along with the normal course of a teenager starting to break free, taking those baby steps towards adulthood.  They’re fears that are associated with living a life and not with being held back from life. The trick is knowing when to tell the fear to get out of the way, and when to listen to it – because there ARE times when you have to say to your kids, “Nope, not this time.”