Tag Archives: occupational therapy

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?

sometimes there is NO regression

Many autism stories we hear are about children who seemed to be developing normally, but at some point they experienced a slow or sudden regression.  The parents relate their confusion and panic at watching helplessly as their children “slipped away” from them.  What we don’t hear as often are stories of the children who never developed normally.

My daughter is one of those.

I had a very normal pregnancy – pretty bad 24 hour-a-day sickness for the first trimester (which I had even worse with my firstborn), normal weight gain, no complications.  The only issue with my daughter’s delivery was the presence of a little meconium, but she was checked by the pediatrician and she was fine.  Her early days were normal, but in early days all an infant does is eat, sleep and fill diapers.  After the first few months, when babies start to pick up their heads, kick their legs and reach for toys, we noticed she didn’t seem to be interested.  I brushed it off as her just taking her time.  But then she wasn’t rolling over.  I told myself, “each child is different.”  By six months my husband was starting to worry that something might by “off” but I was in denial.  By nine months he was annoyed with my inability to see that something was wrong with our baby, annoyed with my making excuses for her lack of meeting basic physical milestones:  no pulling herself to all fours, still not even rolling over, no interaction with toys other than “staring” at them.  She was alert, her eye contact with people seemed acceptable, and her ability to “look into” objects was actually very intense – as if she was solely experiencing things with her sense of sight (which makes sense since she wasn’t reaching out to touch anything).

Her 9 month well-baby checkup was the turning point for me and confirmation for my husband.  The pediatrician said, “Something is not right.  Her legs are like jelly.  Her overall muscle tone is extremely low.  I think she needs to be evaluated by Early Intervention.”  I felt like someone had punched me in the gut.  My head was spinning.  A trusted medical professional was telling me something was wrong with my baby.  I wish I could say my husband “rose above,” but he was so frustrated with me that he couldn’t resist a few “I told you so’s.”  I don’t blame him.

Early Intervention came to our house to do an evaluation when our daughter was 10 months old and their assessment concluded that she was more than 33% delayed in ALL developmental areas (the “more than 33%” was what she needed to qualify for services).  When you consider that she was only 10 months old, 33% put her at around a THREE MONTH OLD developmental age.  Another punch in the gut.  It’s hard enough to hear a medical professional tell you something is wrong, but when you see it written, in black and white, in a multi-page evaluation that goes into excruciating detail about what your child cannot do – well, that’s a whole new level of pain, fear and grief.

When she was 11 months old we started having physical and occupational therapists come to our home several times a week to torture her.  I say “torture” because that’s what it sounded like.  She would cry and sometimes even scream the whole time they were with her.  They were forcing her to move her body, forcing her to touch things (her hands were still “fisted” like an infant).  My four year old daughter hated those therapists for the longest time because she thought they were hurting her sister, and she was angry with me for letting them.  This four year old was also angry with me for learning the exercises the therapists were doing with her little sister, and doing them with her myself when they weren’t around.   It took constant explaining for my four year old to learn these therapists (and her parents) were actually trying to help her little sister.  Help sounded a lot like hurt.  I wasn’t surprised at my four year old’s confusion – sometimes I felt confused myself and would cry along with my baby as I forced her to do the exercises.

I started learning a whole new vocabulary – hypotonia, sensory processing or integration, sensory defensiveness, sensory diet, proprioception and vestibular systems, motor planning.  I had to immerse myself in a whole new world, the world of “special needs.”  Toy shopping changed from looking for “fun” toys to searching out toys that served useful functions.  I lived trying to parent my four year old typical child and my one year old “different” child.  I lived an existence of balancing their needs with my own PROFOUND grief and worry for my baby.  Thank God there was a woman at church who had a five year old with autism.  Our daughter hadn’t been diagnosed yet, but it helped tremendously to have another “special needs” mom that I could bounce questions off of and with whom I could share my tears.

I asked all the typical questions.  Did I DO something to cause this?  Could I have done something to prevent these problems?  What should I be doing NOW to help her? The first two questions would never have answers, and the third had SO many answers I was often overwhelmed with trying to sort out the wise from the ridiculous.  I felt tremendous guilt, tremendous grief, and at times tremendous anger.  We all eventually adjusted to our life of therapies and interventions, but even now, 11 years into this journey, that “punched in the gut” feeling still pops up, more often than I would like…

Autism, my thoughts

Here are my thoughts about autism.  Just laying my cards on the table so we’re clear.

Do I think it’s caused by vaccines?  Maybe.  Do I think it’s caused by genetics?  Maybe.  Chemicals in the environment?  Maybe.  Do I think special diets and or supplements can help?  Maybe.  What does all this mean?

NO ONE KNOWS FOR SURE WHAT CAUSES AUTISM.

What I believe is that it is probably some combination of nature/nurture.  There was no regression with my daughter after the MMR.  She was delayed long before the MMR.  She was in physical therapy and occupational therapy before her FIRST birthday and speech therapy by her second.

We tried the GF/CF diet with her for over a year and didn’t see any change.  We went back to a regular diet and didn’t see any regression.  We tried supplements, we even tried B12 INJECTIONS (at home, my husband holding her down, me giving her the shot, painful for all three of us and our older daughter who had to WATCH).  NO change.  But I have a friend whose son made great strides on the GF/CF diet – so what works for one may not work with another.

Some people say autism is a blessing.  I’m not one of those people.  Some people are upset at those who seek a cure for autism.  I’m not one of those people either.  It is true that each one of our children are priceless, beautiful – and I love my daughter VERY much – I just hate this thing that is standing in her way of meeting her full potential.  Autism has stolen from her a future that should have been open to anything.  She has limitations that will stay with her for life.  I watch her STRUGGLE to learn the simplest things.  I see her younger brother surpassing her in areas.  I see both her siblings’ frustration and anger over having a sister who’s “different.” I see her frustration and inability to cope and it all makes me sad.  Yet she is a warrior, fighting to understand everyday.

I often say that she works twice as hard to get half as far as the rest of us.

MY DAUGHTER IS THE BLESSING.  AUTISM IS NOT.

Perhaps you feel differently, perhaps you strongly disagree with me, and that’s fine.  I’m not saying you have to agree with me.  We’re all entitled to our own opinions/feelings.  Again, I’m just writing about how I feel.  This is just my experience with my wonderful, trusting, sweet, innocent, lovable daughter.  Just laying my cards on the table…

I’ve let you know how I feel.  If you’re an autism parent, how do you feel about it in your life?