Category Archives: Parenthood

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?

 

hodgepodge

It’s been over a month of silence here and for that I apologize.  There’s been a lot going on, but not the kind of stuff that merits a whole post – so perhaps one post with a lot of little things will have to do – hence the title “hodgepodge.”

My 13 year old autistic daughter had her yearly IEP (Individual Education Plan) meeting a few weeks ago and she’s doing brilliantly.  She started in a new program back in September and has really flourished. She’s doing so well, in fact, that she’s going to “graduate” from occupational therapy this coming September.  It  was kind of a shock when her occupational therapist suggested it, but it seems the right thing to do.  The tasks she struggles with are not the kind that they help with at school (like maneuvering her bra clasp).  Most of O.T. in the school setting is focused on handwriting, and she has become a pro.  Her O.T. has known her for years and we had the chance to reminisce about the days when we wondered if she would EVER write.  The breakthrough for her came with cursive.  When her teachers introduced that she took to it like a fish to water.  She no longer had to struggle with lifting up and putting down the pencil with each letter – it’s like cursive was made just for her.  Anyway… in September her twice-weekly O.T. sessions will end, and the O.T. will do monthly check-ins with her teacher just to make sure she isn’t regressing in any way.  Great job!

Sweet sixteen is continuing her dream of wanting to be a professional wrestler.  I had hoped this was a passing phase, but it doesn’t look like it.  How I, as a peace-loving and generally gentle soul, ended up with a daughter who loves to fight and punch and throw people around I don’t know (ok, maybe I have a clue or two, but that’s for another post).  Our children are their own people, that’s for sure.  I spend a lot of time taking her to training (wrestling, jiu jitsu & MMA) and trying to understand her need for violence (albeit controlled, “acceptable” violence).

My nine year old son is getting into Minecraft.  I’ve written that he likes to play with dolls and that this makes him feel very insecure since he doesn’t want his friends to know.  Even at nine he’s aware of gender pressures, which is sad.  But Minecraft is generally a boy thing, so at least now he’ll have something in common with some of the other boys at school, since he also isn’t very athletic.

I don’t generally write about my husband since he’s a really private person, but I will share that pressure at work has been exceptionally high lately and money has been a huge concern, so he’s been EXTREMELY stressed and unhappy.  That’s about all I can write, although I wish I could share more because it would be therapeutic for me – but out of respect for him I need to just stop here.

As for me?  My husband’s stress has been rubbing off.  I mean, how can you see someone you love struggle and not be stressed about it?  I’ve also continued to have problems with my fibroids (I have two whoppers in my uterus) – almost constant discomfort, although not what I would call “pain.”  About six years ago I had lost all my baby weight and ran almost everyday and felt really great about my body. Since this fibroid/menopause junk started about three years ago running is uncomfortable – even sitting still can be uncomfortable – and I’ve gained all that weight back.  I’m tired of it and I’ve had enough.  I had my yearly check-up with the gynecologist last week and go for a pelvic ultrasound next week to check on the fibroids.  I also have my yearly check up with my primary doctor coming up and will discuss things with her too.  I’m trying to formulate a course of treatment since it seems like my body is taking its bloody time with menopause (pun intended).   I’ll fill you in when I develop a plan.

With all that’s going on I’m surprised I’m in a generally good place psychologically, even with the stress of my husband’s situation and my physical health.  I’ve been off my psychiatric medication for a year now, and other than the bad day or bad week which is part of LIFE, I’ve been steady.  I am VIGILANT in monitoring myself though – how I’m eating, how I’m sleeping, how much I laugh, how much I cry, my attitude towards the tasks of daily living etc…

Can’t take care of anyone else if I’m not taking care of myself.  That’s true for all of us.  I hope you all are taking care of yourselves.

What have you been up to?

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…

when they’re sick

In the past month all three of my children have been sick.  It started with my teenager.  Almost a week with a nasty cough.  Coughing with her makes me nervous – very nervous.  She has asthma, which can make these things worse.  But it’s not just the asthma.  It’s a mistake I made when she was four years old (before she had asthma) that will stay with me forever.

She had a cough then.  A cough that wouldn’t go away.  I kept her home from preschool for a week, letting her rest – thinking she would get over it.  Week two came and while she was still coughing, otherwise she seemed fine.  I made the decision to send her to preschool – she was only enrolled for half-days, and I figured a few hours back with friends would actually be a good thing.  Two hours after I dropped her off I got a call from the preschool director, “She’s as white as a sheet and just wants to sleep.”  When I got to the school she looked like a ghost.  She fell asleep within minutes of me putting her in the car.  I called the pediatrician while driving (a no-no these days, but this was 12 years ago and I was WORRIED).  They told me to bring her right in.  The doctor put the stethoscope to her back, and a worried/something-is-wrong look came over her face.  A few more listens just to make sure, she stood up and said, “She has pneumonia.  I want to send her for a chest x-ray.”  I sent my daughter to school with pneumonia.  Good God.  What an awful mother.  (As much as you tell yourself you didn’t know, and never would’ve sent them to school knowing they were really sick, there are few things more powerful or irrational as mommy-guilt.)  A chest x-ray later we were going home with antibiotics and another week or so of being home-bound. A few years after that we would have our first experience with the wheezing that goes along with asthma, and I’ve often wondered if that bout of pneumonia did something to make her lungs more susceptible to it.

Anyway, since then my mommy guilt gets the better of me when my kids are sick and I tend to err on the side of caution.  That said, my children are consistently pretty healthy.  In the past two years I think they’ve had less than a handful of sick visits (knocks on wood…).  So when my asthmatic teenager has a cough that won’t go away and starts to feel lethargic – I TAKE HER TO THE DOCTOR.  And I did.  She was fine, the doctor said.  Just keep doing what you’re doing to get her over this cold/cough.  My husband looked at me like I was an over-emotional worrier, but I didn’t care.

 

Next up was middle child – my “almost” teenager who also happens to have autism.  When she’s sick the whole world knows.  She coughed for about a week just like her big sister and we muddled through without giving her any medicine, because it’s a world war to get her to take any kind of medication.  By some miracle though we were able to find a cough drop she would tolerate to at least keep her throat from being too scratchy.  It wasn’t pleasant, but not too bad – and she didn’t miss any school.

Last with the cough was my nine year old son.  He too had the cough for about a week and muddled through, except that after a week it hadn’t gone away, and on Halloween (a beautiful Saturday) he was “done” trick-or-treating in an hour, wanting to “go home – I’m tired.”  UH OH.  Saturday night he had a low-grade fever.  UH OH.  Sunday the fever went away and he seemed a little better during the day, but he didn’t sleep well at all so I kept him home from school on Monday.  He was still droopy on Tuesday, so another day at home.  By Tuesday night he spiked a fever over 101(f).  BIG UH OH. Wednesday morning, first thing, I planned to call the doctor.  My husband (who never wants any of us to be sick – we “half” jokingly refer to him as Howard Hughes), was pretty condescending, telling me I was paranoid and rolling his eyes.  He was sure it would be a waste of money to take him to the doctor only to get the same message we’d gotten a few weeks earlier with our teen.

When money is a constant worry in your life, a hundred dollar doctor visit needs to be well thought out.  We haven’t met our deductible this year, so office visits are still coming “out of pocket,” and a visit costs almost $100.

My husband wasn’t being heartless.  He was being the thinker, the logical level-headed one.  Often in our relationship we take turns being emotional and/or rational – and we usually balance each other out well so that we aren’t panicking at the same time.  But in that moment I could’ve slapped him.  My mama bear panic was starting to set in, and no matter how hard I tried to think logically, my instinct told me to get to the doctor as fast as I could.  I am determined NOT to ever go through again what I went through with my teen when she was four.

As my droopy feverish (although not as bad as the night before) son sat on the exam table, the doctor got that same worried look I remembered from years before as she listened to his chest.  Walking pneumonia.  They’re seeing a lot of it this fall…  After some helpful advice (keep doing what you’re doing) and a prescription for a STRONG antibiotic, we were on our way home.

BEST hundred dollars I could ever spend.

AND… I completely resisted the urge to tell my husband “I told you so,” although I AM sharing that thought with all of you. 😉