Raising My Hannah

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....

 According to an article written in Psychology Today titled "Divorce and Special Needs Children" written by Ann Gold Buscho, PhD in February 2023, a marriage is more likely to be stressed when there is a child with special needs in the family.  Buscho states, "Surveys show that the rate of divorce in families with a child with disabilities may be as high as 87%.  The divorce rate in families with a child with autism is about 80%."  I am a part of that staggeringly high statistic. My ex-husband and I met in college in the Spring of 1989, married in September 1993, and Hannah was born in October 1999.  Our marriage was not built on a solid foundation of respect and communication so when she was born, and her special needs started to become evident, what we lacked in our relationship became apparent.  We were both raised in families with ineffective communication styles not only parent-to-parent but parent-to-children and sibling-to-sibling.  We just neve...

With the grief that accompanied the realization Hannah was not going to be who I imagined came the guilt.  The guilt that I was grieving to begin with because I didn't feel I had that right since she was very much alive. The guilt that I must have done something wrong when I was pregnant to make her this way.  The guilt that I wasn't a good enough mother; I wasn't patient enough, I couldn't calm her down, I didn't anticipate her meltdowns and prevent them before they happened.  And on and on and on. It's exhausting when I think about it.  I was consumed with worry, grief, and guilt.  The guilt that I must have done something wrong was like a black cloud constantly hanging over my head. I was solely responsible for taking care of and nurturing this little girl from conception until birth so it must be my fault that she has these struggles, right?  I ate well, didn't drink alcohol, didn't smoke, even drank bottled water because I was concerned about the ta...

When I was pregnant, I worked as a lab tech and was basically living by myself in southern New Jersey  because my husband, at the time, had graduated law school and was working as a courthouse intern in CT.  He was gone all week and would usually come home weekends.  After getting home from work, I had plenty of time to ponder what it would be like when my baby girl arrived.  I'd sit in my glider for hours, rubbing my stomach, listening to music, and talking to her.  I imagined her learning to walk and how I'd feel when I heard her say "mama" for the first time.  I thought about her going to school and all the friends she would make.  I imagined her graduating from high school, going to college, getting a job, and having a family.  I may even have grandkids!  It was so exciting to think about.  I allowed my imagination to run wild because why not?  That all came crashing down when, on the second visit to the pediatric neurologist wh...

When thinking about what to share with you today, I was struck with the memory of when I realized, on a conscious level, Hannah was not a typically developing child and there was something very wrong with her.  I say "on a conscious level" because I believe I always knew something was different about her.  In fact, the day after she was born the doctor came in and said he wanted to do chromosomal testing on her because she had some characteristics that pointed to a genetic abnormality.  I readily agreed thinking there was nothing wrong.  My baby was perfect even though she wasn't born with the instinct to suck and needed to be taught by putting a tube into her little mouth so it would stimulate her mouth and throat muscles to work.  Even though her arms were stuck in a bent-at-the-elbow position for weeks and would not easily be moved. Even with that I wasn't concerned.  She just looked like she was going to give a double high five.  No problem.  ...

Hello and welcome to my blog!  I am the proud mom of three daughters; one of whom is 23 and has severe special needs.  This blog is my way of documenting the struggles and joys of raising Hannah, the only one of the three I gave birth to. The past year has been transformational for me and I've come to a point where I have a strong need to document my experiences raising her with the hope I can help someone else going through the same thing.  When I have someone give me credit for parenting Hannah I always say the same thing: parenting any child is tough, I just have different challenges than parents of neurotypical children. Every parent needs to know they are not alone.  This is my way of doing that.  To anyone reading this, you are not alone and you've got this!