Full Love Ahead

Katie's Story

Our story starts 6 and half years ago.  Kermit was born on January 23rd 2002.  He weighed nearly 10 lbs.  As an infant he excelled in his gross motor skills.  He sat alone at 2 months.  He walked at 7 months.  He started to jabber at 10 months.  During this time he had repetitive ear infections. At 13 months he had tubes placed in his ears. The doctors said his speech would pick up fast now that he could hear.  But he quit talking all together.  His wide range of food interests decreased to waffles and toast.  No butter no syrup.  He did not look us in the eye.  He did not want to be touched.  He did not respond if we talked to him.  We thought for a time he might be deaf.  Being a mother, I called a child development center that did free screenings.  I had no idea what was going on.  But I knew we needed help.  They screened him and said he was delayed in speech, fine motor skillsand social skills.  They immediately started speech therapy and OT.  Free of charge.  We worked with them for 5 months.  I remember the last day like it was yesterday.  His speech therapistcame over with a glum look on her face.  She sat down and said. "I think we need to have Kermit seen by a doctor."  I said ok.  She said he has red flags.  I will admit by this time I had noticed the spinning for hours with no dizziness.  The hand flapping made me wonder.  But then she said the words.  "I think he has autism." 

At that time it did not affect me.  I just wanted to get him help.  So we scheduled an appointment with a child psychiatrist.  She saw him once and just watch him interact, or lack thereof, with us.  The second time she came into the room and said "Your son is autistic; he will never talk, pretend play, dress himself, smile, laugh or make friends.  He will always be behind and will never lead a normal life."  My heart fell into my stomach.  Tears came to my eyes. I looked away ashamed of my emotions.  I watched my baby now 2 years old and just silently asked God "Why?" 

The doctor put Kermit on some meds to help him sleep and sent us on our way.  Two months later on our own instincts we had our pediatrician refer us to a pediatric development specialist at Denver's Children's Hospital.  That doctor spent over an hour with us.  He was very kind and full of compassion for my son.  He said 'He is autistic."  I asked him point blank what that means for him.  He said I can't say.  Every child is different and they all do things in their own way in their own time.  I believe he will talk.  He will be potty trained.  He will live a full life.  He will be happy."  It was such a different approach from two different doctors. 

Kermit remained in speech and OT until his 3rd birthday when he qualified for our school early childhood class.  We set up an IEP and hoped for the best.  He went for the 4 months of spring and then went to a therapeutic preschool for summer.  We saw no improvement.  At his next IEP he had a new teacher, a wonderful teacher.  She said "I think Kermit would do well with PECS and a para-professional."  We agreed with her.  But the administration rep said, "No.  That is not possible."  We don't have the employees or the money."  Stupid as we were we left it at that.  But then after thinking about it for two weeks I talked to Kermit's teacher and told her I wanted the IEP rewritten.  The admin rep refused.  My husband became rather pissed and he wrote a letter to the school board and the local newspaper.  Suddenly we were invited to a PECS training paid in full by the school district.  The first day the superintendent came in and asked to speak to us.  Now I had never been in the super¢s office and was scared we were in trouble. Like I was still in school and he could do anything about it.  In his office he said "I read your letter.  To be honest I know nothing about autism and I will not pretend I do.  How can I help you?"  I was speechless.  For so long we had run into professional after professional who seem to think they knew my son better than I.  We explained the IEP meeting and our need for the new meeting.  He said "give me two weeks".

Within 1 week the PECS system was in my son's classroom and he had his own binder.  He also had a one on one para-professional a big bear of a man named Jed.  The admin rep was fired by the end of the school year.  Kermit excelled with PECS he quickly completed the 1st 4 levels with a month.  He then started saying the words as he handed the cards.  He attached to Jed and to us.  He smiled for the first time!  We found out that he knew all his colors shaped and ABC's he could also count to 20.  He just could never tell us. 

On August 4th 2008, Kermit received his therapeutic service dog.  Once bonded, she will help him with anxiety, transitions and socialization.  She is a beautiful black lab named Dara.  At the dog training we were told that with autism it can take up to 3 months to bond.  Kermit has made small itty bitty baby steps.  Just the fact he says hi and bye to her is something.  On August 13^th, Kermit started 1st grade at age 6.  They decided he was too smart to stay in K again.  He has started reading and adding.  He attends horse therapy and loves church.

I will admit through most of this I hated God.  I blamed him for my son's disability.  I did not understand what I did for him to do this to my son.  I did not want to forgive him.  I have learned that I don't need to forgive God.  God gave us Kermit for a reason.  In the last two years I have started advocating for autism and he has educated an entire church of nearly 500 about autism.  He knows everyone in the church.  The church paid for his dog and all the costs of spending a week in a hotel. 

After much stress and worry we finally had a daughter.  I was terrified she would be autistic.  I had her screened 3 times and was relieved to find her "normal" whatever that is.  We have enrolled her in a private preschool.  We decided she is around autism all the time.  I want her around average kids so she can have some fun. Not that Kermit is not fun; he has the most contagious laugh.  His whole face laughs.  He is incredibly ticklish.  He incredibly loves. 

Four and half years ago my world came crashing down.  It took my little boy and his autism to show me that there was more to life.  I gave up on God 4 years ago.  Today God is the center of our lives.  That is our story.  I hope it helps someone.  Thank you for giving me the chance to type this.  I have been wanting to do this for a long time.

Ellen's Story

The words were still coming out of the neurologist's mouth.   I could hear them, but didn't listen.  Time seemed to slow down.    I turned and I looked at my son.  He looked exactly the same as he did before.    Same blue eyes, same jelly stains on the front of his shirt.  His gaze fixed on a computer on a nearby desk.  One hand clutched an old hard drive from his pile of used computer parts.   The other hand scratching an itch.   He looked exactly the same as he did before the doctor spoke.  Would  a diagnosis of Asperger's Syndrome change anything?   

Yes.  Of course.  A diagnosis brings answers.  It also brings questions.  But it does not need to rob you of the joy of raising your child.   If anything, there are more absurdities in our lives than the typical family.  It's our attitude that really determines how we live our life.

So take the time,  read all the books and talk to the doctors.  Gather information and seek out expert advice.   This website is not intended to take the place of professional guidance.   But we have the practical experience that many experts lack.    We want to make your day-to-day living easier for you.  

 Many parents don't have the time or resources to attend a regular support group.  The demands of work, home, other children, etc. do not go away.    A few minutes on the internet is often the only "me" time a lot of us can manage.

We've all wonderered  where do we go to learn to cope?  What will be expected of us?    How will we survive this?    Come visit our website as often as you need.    And be sure to notice the funny parts of your day.

Mom, I think I got maple syrup in my ear.  Will I be okay?

SPECIAL ED ADVOCATES FOR HIRE

Experienced, trained special education advocate services are now available to parents of NH students.    Initial conference is free.   Fees are negotiable, and YES, we can attend IEP meetings with you!  Please fill in the blanks in the lower right hand corner of this screen to send us your request.   One of our staff will contact you within 24 hours of receiving your email.

Go ahead Mom, take a minute for yourself!

Mom's do the lion's share of the work, but Dad's seem to struggle more with parenting a child with autism.