Category Archives: Autism

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.

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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.

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.

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?

Perseveration

As my autistic daughter gets older (she turned 13 two months ago), the issues we face aren’t as “fundamental” as they used to be.  Gone are the days when we wondered if she would ever talk, when she needed a behavior modification plan, chewies and fidgets, compression vests and discrete trial learning.*  She is still in special education, and still receives occupational and speech therapies every week, but now our job has been learning how to deal with her special needs in a typical school context, and in balancing her desire to “be a cool teenager” with showing her what the limits are to that “coolness.”  An example of finding this balance is that her older sister (but not me!) is able to tell her that wearing FIVE necklaces to school or the mall is too much, even though she likes all of them and would love to wear them all together.

But some things haven’t changed.  While it’s been a LONG time since we wondered if she would ever talk, her speech still has a sing-song quality to it that can be well, annoying if I’m otherwise tired or cranky.  She still frequently gets her verb tenses wrong in conversation and her sentence structure isn’t what it should be.  Her eye contact is sometimes good, but often not.  Her voice is much louder than typical, and we constantly have to remind her to speak in a quieter tone.

Generally I’m pretty patient with her.  I know she tries hard, so I try hard too.  But there is one thing that gets to me almost every time.

blog_perseverate

By far the one thing that is almost guaranteed to get on my nerves and drastically challenge my patience is when she perseverates on an idea or event.  For those unfamiliar with the term, to perseverate means to “repeat or prolong an action, thought, or utterance after the stimulus that prompted it has ceased.”   My daughter will perseverate in speech.  She gets an idea, event or thought in her head and simply cannot easily stop talking about it.  And because her ability to “mix things up” in speech is limited, she’ll repeat the same things over and over.

When she starts repeating herself I have to start taking deep breaths, because I know it’s going to take a while for her to get through it.  There was a time I used to say things like, “We’re going to stop talking about this NOW.”  But I’ve come to realize that perseverating is just her way to try to process an event, to understand it.  These days I’m better able to tolerate listening for a good long while before I’ll say something like, “I really don’t want to talk about this anymore.  I need to move on to something new.  What else would you like to talk about?”

It’s not always easy.  And sometimes I fall back into my own old patterns.  This happened a few days ago.  I picked her up from school and heard all through the ride to pick up her two siblings how there was a food fight at lunchtime (I knew this was a fact because the parents got an email from the principal).  Certainly that’s out of the ordinary, and completely outside of any experience she’s ever had in the lunchroom or at home!  I knew she would talk about it, but after a half hour I was done hearing the same phrases over and over.  And I reverted to my old behavior.  I forgot.  I told her (albeit nicely) to just stop.  Ugh.

I’ve been stressed and tired recently and I am NOT on top of my game.  Patience truly is a virtue, and one that’s lacking in me right now.  But to be a parent (especially a special needs parent), means you need to dig deep to find that patience on a regular basis.  How do we do that?  There’s no universal checklist for self-care.  I can only speak for myself.

Today was a good reminder to do the things that I need to do to take care of myself.  The stress isn’t going anywhere anytime soon, but I need to get out my coping strategies so that I don’t start taking it out on my kids or spouse.  As a pastor by profession, I find myself often telling people, “You can’t take care of (whoever), if you don’t take care of yourself.”  I need to follow my own advice.  My daughter needed my patience so that she could process an out-of-the-ordinary event that was HUGE for her.  I’m sorry I couldn’t let her.

I apologized to her (which is something I try my best to model with my kids), and told her I would try to do better.  That’s all we can do as parents, and as people.  When we make a mistake, apologize and try to do better.  Tomorrow is another day, a new beginning.


*I am grateful that my daughter HAS been able to make developmental strides in all areas – educational, motor skills and planning, and sensory.  Please be aware that not all people with autism are able to make these strides.  Autism is a spectrum disorder, ranging from mild to severe.  My daughter’s experience is her own, and no one else’s.

 

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…

letting her fly, part 2

So, I did something the other day that I thought I might not ever be able to do.  It may seem like a small thing to some people, but for those in the autism world, WE KNOW.  We know that what might seem small is really HUGE.  Today was huge.

My small/huge thing?  I parked in the pick up line with all the other parents picking up their kids from school.  (The area in which I live doesn’t have busing for the majority of kids.)  I did NOT park my car.  I did NOT walk to the door and wait for my 12 year old daughter.  I did NOT walk with her back to my car.  I did NOT do all the things I have done for the past nine years she’s been going to school.  I sat in my car, in the line, with all the other parents – and waited for her to come to me.

This was no spur of the moment decision.  We’d been thinking about it since she started at her new school last month.  But it still wasn’t easy to actually DO.  Not for me.  I’m a bit hovering.  I get very anxious when she’s out of my sight or the sight of her teachers/aides.  She got lost once at the beach when she was five years old, and that experience scarred me for life.  She is not one to wander, thank God.  But when she has gotten separated from a group (or me), her tendency is to walk around looking, but not ask for help, even though we’ve tried to work on it with her again and again.  Anyway, as a result, I hover.  I can’t help it.  And letting go, letting HER go, is hard.

So this was a major step for her, and for me.  When I brought up the idea to her she was immediately excited. “Yes mommy!  Let’s do it!”  She has watched her older sister and younger brother do this, so I bet that was part of her excitement – doing something she sees her siblings and all the other kids doing.

She is capable.  She knows what my car looks like.  The ongoing plan is for me to get to the school early enough every day so I can park directly in front of the school building.  She just has to walk out of school by herself and walk down the sidewalk and hop in the car when she sees me.  Easy peasy right?  Well, not so much.  Not when you’re a “hover-er.”  Even a “hover-er” conscious about the need to stop and let go a little.

My heart was racing the first day.  The reality is always a bit different than the planning.  I ended up having to park near the end of the building, so she had to walk almost its entire length to get to me. Would she see me?  Would she get confused if she didn’t see me right away?  Would she get distracted by something or someone?  I didn’t have a sight line to the school door, so I didn’t see her until she was relatively close by.  When I did finally see her after what seemed like an eternity after school let out, she was walking confidently, with an immense smile on her face.  SO PROUD of herself.  Walking alone to her mom’s car, with all the other kids at school.  One of them.

I don’t know how long it will take until the butterflies leave my belly when the school bell rings, and the kids stream out, but as I said in part 1 of “letting her fly,” I just have to GET OVER MYSELF.  I need to find the balance between being appropriately protective and hovering.  But as I’ve found even with parenting my other “typical” children, this is easier said than done.  For now though I celebrate this new little bit of independence my daughter has accomplished. I am SO proud.