No one believes there is a problem

Perhaps one of the most frustrating things about being an autism mom, in the beginning of your journey, is that no professional will believe that there is a problem.  Though the word autism had not entered my vocabulary when my son was 15 months old, I felt instinctively that something was off.  He did not talk, he did not make eye contact, he had certain rituals that had to be followed.  For example, whether or not we were having pancakes, the red maple syrup jug had to be on the table at every meal. Breakfast had to be eaten out of the purple bowl.  We could not go in or out the front door, only the back door.  He was terrified of loud noises, the coffee grinder, hair dryer, vacuum cleaner, etc..  Slowly, we became slaves to these patterns and rituals.  When I mentioned my concerns to his pediatrician, he basically patted me on the head, told me I was an over anxious first time mom, and sent me on my way.  I was told that because he was a boy and a preemie, language and other skills would be late in coming.  Despite these assurances, the fear that something was wrong remained.  At that time, I was pregnant with my second child and chasing an extremely active toddler.  I decided to put these concerns on the back burner until after I gave birth.  My daughter was born one week after my son’s second birthday.  I made an appointment with the pediatrician, and showed up with my husband, two children, and a list of concerns clutched in my sweaty hand.  He refused to believe that there was a problem.  The only useful information I was able to wring out of him was a number to call for early childhood special education.  I called that number as soon as I got home.

The next week two teachers from ECSE (early childhood special education) came to make a home visit.  They came with toys and books and games.  My son refused to even notice their presence.  They asked a long list of questions and within twenty minutes told me that my son was on the spectrum and qualified for services immediately.  I was stunned.  I knew there was a problem, but just hearing the word autism in conjunction with my son was enough to make my heart break.  What I did not know at the time was, this was just the opening of a new door.  The teachers left and my head was spinning.  Suddenly, the phone rang.  It was a childhood psychologist.  She wanted to come over the next day.  The next morning she arrived at my door.  Ravi did relate to her somewhat, but her rapid conclusion was much the same of the teachers from the day before.  My son was clearly on the spectrum.

Within a week we had in-home services.  He had a teacher, a PT, and an OT come every week.  Though he responded favorably to them, I still knew that this was not enough help.  I was told I could enroll him in ECSE at the local school.  A bus would pick him up every morning and return him every afternoon.  My heart failed at the thought of putting my two-year-old son on a bus.  (Obviously, the bus had car seats and aides and was set up for little people).  A day before his first bus ride, while visiting his soon-to-be-school, my husband took him on an empty bus to explore.  My son was fascinated.  On his first day of school he merrily hopped on the bus and never looked back.  Four and a half hours later, the bus returned and he came bouncing off.  As he dismounted, he turned around and hugged the tire of the bus.  It was the beginning of a love affair with buses that has continued for 13 years.

Harriet’s Hedgehogs and Autism Advocacy

Autism, hedgehogs, dogs, long distance running — they all go together in my world.  I am the mother of two teens: one who is on the spectrum, my son, and one who is neuro-typical, my daughter.  Autism has been part of our lives since my son was diagnosed in 2004, when he was two years old.  When he was diagnosed, I was not given any real help or suggestions.  What I needed was a guide book, or a road map, a “where do I go from here” sort of thing.  This is what I am intending this page to be.  I am a mom, a special ed teacher, and a fierce autism advocate.  I am not a doctor or a therapist.  I cannot diagnose.  What I can do, hopefully, is provide you with a road map of what to do in those early days when your son or daughter is first diagnosed.

How can I help you?  When my son was diagnosed in 2004, I felt very alone.  Autism resources were much harder to come by.  Though our lives quickly were filled with teachers, OTs, PTs, SLPs, I felt very isolated.  There did not seem to be any answers to my questions.  Will he get better?  Will he ever speak?  Am I doing enough for him?  How do I get more services?  Should we try ABA, RDI, swimming with dolphins, gluten free, casein free?  Which end is up, anyway?  Gradually, I noticed that the best information I got was from other autism moms.  We met in waiting rooms while our children were in therapy and we swapped ideas.  We were not doctors or professionals in this field; we were just moms in the trenches, trying to make it through the day.  This is what I want this web site to be: a road map for moms.  I want you to know that you are not alone.  If I can, I would like to help you.  My son is now 15, and I have been on this strange yet wonderful journey for a long time.  I can help you troubleshoot, bounce ideas around, look over IEPs, and advocate for your child (and you) at contentious IEP meetings.  If you feel that I can help you, please reach out to me.  I am always willing to listen.  My consulting fees are reasonable and I believe you will feel that I am a good investment for your child.  The autism path can be scary and daunting at times.  Let me walk this path with you.

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