The Autism Mom and Motherless Daughter

When Danny and I were asked to join the Today Show for a segment on autism awareness I thought, "Do I really need to answer that?" But then after I said yes, a panic within me ensued! I'm no stranger to speaking in public. I've done many presentations, spoken to a room full of people, and built community within schools by speaking publicly. But this was different. This was our life for all the world to see.  I'm not shy speaking about autism. One of the reasons I educate as many people as I can, is not for me, but for my children. Who among us wouldn't go above and beyond for them?  But lately, I've been feeling down.   We all have guilty feelings when we feel we aren't doing our best but it's just a pestering thought and our own self consciousness that makes us think that way. I knew that going to the show would open up the floodgates to my emotions but how could I say to my children to be fearless, when I was scared to death! But off I ...

Being a mom of special needs children comes with great responsibility.  Your whole life changes and you have to relearn to parent if you already have a typically developed child, which in my case, I do!  You enter this pit of despair after the diagnosis and you become suffocated with IEP meetings, new terminologies, and therapists in and out of your life. Most of your personal life has to take a back seat in order for you, as a parent, to fully grasp the situation at hand. You feel like nothing will change, that you'll be unhappy and forever alone. Thoughts like that could never be more wrong.  The following has shown me that I have an abundance of support from all walks of life and I've been too blind to see it. In December, Daniel and Chloe participated in a photo shoot for a special needs issue of Parents Magazine that would come out in April 2014.  Like all of the children that participated, there was a chance that they would be on the cover! So, of...

Today I am angry with autism.  The way it has maneuvered its way into the lives of my children and stolen their voices.  How dare it fester in their brains blocking them from making friends, speaking their minds and learning they way they are supposed to learn? At a time like this, we should be going to stores picking out what they want to wear for the First Day of School but no. I have to make their school decisions, their outfits, their school supplies and the ever beloved picking out of the book bag that will determine their personality for the rest of the year. Daniel is entering Kindergarten in September and this time is a big deal for parents.  It is the true beginning of their educational career. But for Daniel, whose school placement is still up in the air, it won't be as fun.  He won't make friends, he won't get invited to birthday parties and he won't develop a crush on his teacher. I am angry at autism because it has made me into an emotional bl...

When my son Daniel was first diagnosed with Autism in May 2010, it was a heartbreaking event.  At the time, I was a mom of two, Adriana is older than Daniel by 2 and a half years, and pregnant with my third child, Chloe.  I didn't know much about autism but I knew that our lives as we knew it was about to change in a way that I couldn't imagine. Back when I first found out I was having a boy in 2008, it was such a happy time.  We had the much sought after child set, a girl and a boy.  Our dreams for each child was already picked out like many parents do when they learn of a pregnancy and they fast forward into their child's future.  For Daniel, my husband envisioned an athletic life with endless scholarships and many girlfriends.  Our son would be a playboy but maintain his studies so that one day he would be able to provide for his future wife and children.  But life had other plans for Daniel, and his struggles in this world would begin at the ...

Count down to Kindergarten has already begun to consume every thought in my day.  In exactly 7 months, Daniel will be enrolled in Kindergarten and thus will begin his real struggle for a good education.  In June, he will turn 5. When he first was diagnosed in May 2010, I held on to the belief that he would follow my subconscious timeline of development.  The diagnosis was all new to me and I was still, and am still, learning about what it means to be an autistic person.  Everyday is a different day and despite consistency, I'm always surprised about how a day ends for him. Then I look back to the previous year to see how we, as a family, have changed.  2012 brought about another heartache, 2 in fact.  Chloe was also diagnosed in April with PDD-NOS and in October, after 8 years, I lost my job.  I don't know which blow was worse. So now here I am with a full plate and trying desperately to sort things out.  I'm faced with how to manage a house...

Regressed.  I hate that word. It's dirty, sinful, and heartbreaking. I saw that word today on Daniel's 3 month report from school written by his teacher.  REGRESSED.  I saw it blazing on the page and I couldn't even focus on any other word nor did I fully comprehend anything else. "Daniel has regressed since returning to school in September." ~quote from Teacher I know. I know that. Don't you think I know that. I'm with him all the time. I AM his mother for Pete's sake. Don't you think I know that my son who was doing so beautifully during the summer, vocalizing 4 words, interacting with his peers, eating on his own is now doing NONE of the above? It's so frustrating! I was so hopeful this summer secretly praying that he would continue to flourish and then he wouldn't be so far behind. Maybe he'd try to string together a sentence by the holidays. Foolish of me to think that. I put all my eggs in one basket not realizing that the b...

It's starting again. The sleepless nights, the sudden fits of rage, the screaming. I always talk myself into thinking that Daniel is progressing and in some areas of his development, he does. Then he has his major setbacks and I feel like I'm back at square one. It feels like it happens overnight, he stops verbalizing, he doesn't want to feed himself and the meltdowns come more frequently than I would like. Before the meltdowns felt as if it was a weekly or  biweekly thing. Now it's about three times a day, everyday.  And all the feelings that I have been suppressing for the past few months, are so overwhelming that I feel like my brain is being crushed from the inside out. I worry about that kid so much, much more than I worry about the girls. Sure Chloe is also on the spectrum and she receives therapy and the whole nine yards but I don't worry about her as much. She's like a nonverbal go getter. I feel like nothing will nor will she let it keep her down. But D...