Raising My Hannah

Frustration.  It's real and it's something I deal with most days but I've learned how to handle it.  Some days I do a better job at handling it than others.  Here's the issue: Hannah can't effectively communicate and she is autistic so she perseverates on things and it can make me feel like I'm going out of my mind.  Perseveration is when she gets stuck on an idea or topic and can't be distracted away from it.  It's the equivalent of a verbal child asking the same thing over and over and over again.  You give an answer and 5 minutes later they ask the same thing as if you never addressed them.  It's frustrating on a good day but after a long, tiring day it's too much to bear.   And Hannah is relentless.  She doesn't give up and tire easily or quickly. In order to communicate, Hannah points to things, using some sign language, has a few vocalizations and words, and has an iPad that has an app on it called Prologo2go.  It is an additi...

   When Hannah was 9, she had her first grand mal seizure.  The scariest thing about this was I was away at the time so I couldn't even be with her.  Hello, Guilt, my old friend.  Here's what happened... It was April 2009, a little more than a month before I met my husband Steve. I was working as an 8th-grade science teacher in Newtown, CT.  Each year, the 8th grade students had the opportunity to attend a three-day trip to Washington DC that ran from Wednesday morning until Friday night.  I was one of the chaperones for my cluster so I arranged for Hannah's father to watch her while I was gone.  Bright and early Wednesday morning we boarded the buses for the 6 hour trip to Washington DC.   About four hours into the trip, I was watching a movie when my phone rang.  When I answered it, the only thing I heard was Hannah screaming.  In an instant my heart sank and I felt like I was going to vomit. This is the call no parent wants to re...

                                                                        I took this picture, yesterday, after I hiked in one of my favorite places.  I like to sit and let my body cool down while I watch the water pass in front of me.  I find it soothing and it makes me feel at peace.  Today it felt different, though.  I think it's because I'm different.  I saw the water easily flowing over the rocks and noticed how the rocks weren't stopping the water; they allowed it to flow over them.  This is how I feel about life right now; I'm allowing hardships to flow over me instead of trying to stop them from hitting me.  As a result, I'm feeling a sense of peace I've never felt before.  My transformation didn't happen overnight, though. It was...

The human brain is a judgement machine.  It's just the way it is.  It's necessary, at times, and helps keep us safe. At other times, it can lead to behavior that is detrimental. We judge others for what they wear, what they look like, the job they have, the house they live in, what they say, how they act, what kind of parent they are, and on and on and on.   I don't think any judgement of me has ever bothered me as much as the way I've perceived being judged, at times, when I'm out in public with Hannah.  When she was little, and still at times to this day, Hannah is what I call a runner.  When she gets overwhelmed with her surroundings she runs.  If she sees a stranger holding keys with tags on them, she'll take off from me and run toward the person with the keys with abandon.  She has no sense of stranger danger or safety.  Zero.  Zilch. Nada.  As a result, I have to be hyperaware not only of where she is when we are in public but...

It seems life is filled with transitions.  They can't be avoided so the best thing to do is go with the flow.  That's not always easy to do when you have a child; especially one with special needs.  The first major transition for Hannah was about to occur: attending a public school preschool.  She was approaching the age of three so it was time to transition from Birth to Three into a preschool program.  When she was one, and was evaluated for services through Birth to Three, an Individualized Family Service Plan (IFSP) was created that had the goals the service providers would work on with Hannah.  Starting in the public schools meant she needed a new plan.  This plan is called an Individual Education Plan (IEP).  I won't lie; I was terrified.  I had no idea what to expect during this process even though the therapists that worked with Hannah tried to prepare me and said they would be present.  I walked into the meeting and immediately ...

Sometimes, the system people with special needs and their caregivers have to navigate really sucks.  When Hannah had her one year pediatrician appointment I spoke of in an earlier entry, not only did she begin seeing specialists, she also started Birth to Three, an early intervention program in Connecticut children that qualify can take part in until the age of three.  A group of therapists from Birth to Three came to my condo and evaluated Hannah.  She easily qualified so a physical therapist came to the house three times a week, for one hour per visit, to work on her OT, PT, and speech goals. Three hours per week didn't seem like enough time to me but that was what she initially qualified for.  After a few months, I wasn't seeing much progress so I started looking around on the internet for information.  I acknowledge this can be a very bad idea because it's not good to try to diagnose your own child but I knew there was more going on than was being addressed....