The grass is greener on the other side of the fence, or: When a diagnosis would make a mother happy

If you aren't comfortable with a cup of tea or coffee and time to spare, you may want to skip this one for now - for I am Anita-the-long-winded and this is my story:

About 14 years ago I was living a completely different life.  I was married to an abusive man who was mostly absent for the two years of our marriage.  However, during one of those two years we had two children both born in 1997 (but not twins!). G & W.  On December 28th of that same year, the man left for good never to be seen again.

When the difficulties started with my youngest son, I assumed it was my fault.  I was a single mother run ragged with two very young boys.  As the problems got worse I reached out for help and my fears were confirmed -- I needed to spend more quality time with the kids.. talk to them more.. read to them more...G's temper tantrums increased.  The public meltdowns kept us mostly at home.  I reached out for help again and the professionals told me I needed to do a better job of discipline.

By the age of 4 and 3 both boys were non-verbal.  I jumped through a million hoops to get them early intervention services.  I was scolded yet again for maybe not talking to them enough.. not reading to them enough.  "Perhaps," said a young therapist I will never forget, "with you being single and everything there is just not enough conversation in the home."  Nevermind that the boys were actually with me at work every day -- with me... with their grandparents.. and with an office full of doting women who looked forward to their lunch break play sessions with them.  As a matter of fact.. as time went on... and therapy was delayed due to lost paperwork and changing offices and personnel disruptions month after month... I was eventually told that the best thing for the boys would be a daycare center where they could learn from other kids.

I complied.  I always complied.  And then began the daily nightmare of calls from the daycare center.  It was usually about my oldest -- his brother was simply 'too quiet'.  He, on the other hand, literally reacted to human intrusion like a scared caged animal.  The meltdowns were disruptive to the other children.  He needed help.  I continued to plead with the early intervention specialists who assured me that there was nothing wrong other than a speech delay.  That was his diagnosis and that was how it would stay.  Behavioral issues should be handled through better parenting.

Somewhere in the middle of all this I met the man who was to become my husband.  He stepped in to rescue the boys from a daycare center that had become downright hostile to me and my children.  The boys it was whispered loudly to the other parents were the children of a single mother.  Everyone exchanged a lot of knowing nods and glances and they would glare.  In the meantime, my oldest finally started to receive speech therapy (after a bureaucratic delay of 1 1/2 years!).  After only SIX sessions he spoke his first words... In a complete sentence.  His brother responded by immediately talking as if he had been all along.  In their new found voices they would beg and cry not to go back to daycare.  That's where the rescue comes in.

My soon-to-be husband gathered the money and enrolled them in a private school - preschool and kindergarten.  The suddenly concerned teachers at the daycare took us aside to warn us breathlessly that they would never make it at a regular school.  Oddly enough.. they did.  They continued with speech therapy and fit in fine at school.. were loved by their teachers.

However, the dark side was still there.  My oldest son still had unexplainable and unconsolable tantrums.  My youngest never ate.  Food made him sick.  He cried somewhere around 20 hours a day.  The pictures in my mind of him as a toddler --- well... he's crying.  As a matter of fact.. the actual photographs are the same.  

Not too long after this though... my soon-to-be-husband became my husband and he immediately legally adopted the boys as his own.  An amazing thing happened... now when we sought services for the boys -- they didn't blame me.  Now, mind you, they had no answers... They couldn't explain it... there was no diagnosis... maybe they'll just grow out of it.  That's how some kids are.  Maybe take them out for more exercise... less sugar.  

So we were a normal family.  The boys were 5 and 4.  We got kicked out of several pediatricians offices for G's fear reaction to doctors, nurses, tongue depressors... uh.. and shots? are you kidding me?  Don't get me wrong - people were usually sympathetic:  "I am so sorry. So sorry. We just don't know how to handle him and he's scaring the other patients.  Good luck to you. Really good luck!"  

We moved to another city and a new school about a year later.  That's when the school problems started again.  Daily calls and conferences with teachers.  Daily. All we were told was that there was a problem.  Handle it.

One administrator finally suggested we see a pediatrician and a psychologist with G.  (By this point.. whatever difficulties W was having paled in comparison... and the focus remained solidly on his brother.)  The pediatrician noted speech difficulties and wanted to know if he was seeing a therapist.  Assured that this was so - he saw nothing else to be concerned about.  (As G seethed and snarled and attempted to bite him from the corner.)  The psychologist saw G twice a week for six months.  It cost a lot of money.  They played with a lot of toys together.  At the end of it all he told us that if G wanted to keep coming back he could - but he didn't see any reason for it.  "He's just a normal young boy.  Nothing to worry about. He was just upset about the move, I bet."

The problems continued at school:  "He's too attached to his brother.  He doesn't play with other children.  He takes too long on his work.  He's too concerned about the other children hurting themselves.  He's a tattle-tale.  He makes inappropriate remarks.  He constantly interrupts during class.  He doesn't follow directions."

We always asked for advice.  We got shrugged shoulders.  I would specifically mention the autism spectrum.  Sometimes I'd get a head nod.  We'd ask for a referral for help.  We got shrugged shoulders.  And then we quit.

When G had finished third grade we took them both out of school and started to homeschool them.

They were both homeschooled for six years (and through the birth of three additional siblings) before G became so disruptive at home that we made the decision to send him to public school.  Worst case scenario - we hoped with all of the new awareness of disorders that if problems arose... the school would recognize it for what it is and he could get the help that he has always needed.

That was last year.  He's had no official trouble at school.  He turns 15 next month.  We deal with the occasional melt-down here at home.. and he does suffer from social isolation.  All we can do is what we have done since we started to homeschool him... Honestly address the problems.. try to help him find a way of doing things that works for him... And you know.. hug him a lot.

We have called the new centers that sprang up all over our area for Autistic children and families.  He's too old for a diagnosis.  He's too old for their programs any way.  The last really nice man I talked to at a University program said to me very sadly "Honey... just keep doing what you're doing...  You've been through the worst already... You're an expert yourself."

So there you have it.  We have G who was and is a textbook case of someone on the Autism spectrum.  His brother W still suffers from sensory issues - after 14 years I have finally come to believe him when he says that some bland food is 'too spicy'.. or that he simply CANNOT wear a shirt with buttons.  Other than that he made great strides in social interaction early on.. and though I'd say some people would call him a bit eccentric... he's well-adjusted.  We also have an 8 year old girl, Y who is completely typical other than being quite precocious and occasionally a little too sarcastic for her age.  Then there is our 6 year old, E - who was diagnosed with Apraxia of Speech and an undefined motor development disorder last year.  It has not been easy but she's made a lot of progress (after four years of speech therapists) this past year with an excellent combination of private and publicly funded therapy -- and a couple therapists who dearly love her and think outside the box.  Our youngest is a boy - P - who is four years old.  His development thus far has been typical -- with his speech being a little on the slow side concerning intelligibility.. However the influence of his sister is being taken into consideration as many of his 'errors' mimic hers.

So there is my story.  Long but far from complete.  :) Let me know if you have any questions.

I'm really looking forward to getting to know all of you.

-- Anita