The Autism Mom and Motherless Daughter

Family.  It's what it's all about, is it not? The love, the trust, the respect, the support.  I love my family. The one I was born into and the one I've created.  But it's not always roses with the one you're born into. I've also been a secret writer.  Technology has given many a voice to reach more people than just the pages of your secret notebook.  It's a gift used by many to heal and to express your feelings. And it is exactly what I and many other bloggers do. I have to be honest, I almost took this blog down as well as my FB page I created for DJ.  Its creation has begun a rift in my family. But then I took a step back and thought about it. What's more important, what you're born into or your creations.  The ladder, of course. I write so that one day DJ and the girls will know that I've always thought of them.  It's not something to bring attention to myself.  It is to bring attention to an issue that affects so many families. ...

About a couple of weeks ago, I went to a speech workshop at DJ's school.  The purpose was to help parents get ideas on how to stimulate speech in the home through everyday tasks and play.  I have to admit, I've been feeling defeated because all that I do is not working.  I also think the workshop made me feel worse. There was a  parent in the audience that was a speech therapist. She's been one for 11 years and similar to me, her son is non-verbal.  She spoke of her difficulties of communicating with her son, of knowing if his needs are being met.  And I thought that if she felt that way, a pro in the field, how am I supposed to feel empowered?  If my 10 plus years in the field of working with children and families were not experience enough for me to get it together.  I cried as she spoke because I haven't met a parent in my same moment, with a non-verbal child.  It's hard to know if you're doing right by them.  A parent works so...

DJ started school this September and I must say, he loves it.  The whole summer I feared that he wouldn't be able to cope without us, without me.  You hear so many horror stories about the bus rides, the school, the teachers and feel, how can I protect him? He can't exactly tell me. I think since he's nonverbal, I worry about him the most.  I asking him how his day went and not getting a response.  Granted, every morning when we say, "time for school", he literally jumps out of bed. That is a clear indicator that things are going well and that he likes it.  But still, I need to know! As far as me, I did have an emotional breakdown this past summer. It came out of nowhere. I worked a summer program which also housed District 75, which is for special education.  I was outside in the playground visiting a class 3 weeks into our program when it happened.  I had seen this specific child before and his teacher, practically everyday. But this time, for me...

Because I have loved life, I shall have no sorrow to die. - Amelia Burr When I see my kids, I wonder what will become of their relationship with each other when they are able to make decisions of their own.  Will they continue to be close or will life come in between their relationship?  Life meaning family gossip, in-laws, children.   When you have children, the whole point is to raise them to be better than you.  Foolish mistakes need not be repeated through them.  I have siblings of my own and I can honestly say the relationship between all of us could be better.  When you're in the moment of, "I want nothing to do with so and so," it's easy not to see the bigger picture.  What would happen if tomorrow I got a call with the news that one of my siblings had passed on? My dad lost his sister, Titi Carmen, this past Saturday.  After a long time of not speaking, they reconnected after my grandmother passed on in October '10. ...

Adam Mansbach has written a very candid book on children and sleep, "Go the f**k to sleep."  It's as if he knows me or something. The last time I think that I actually slept was the night before I had Adriana, 2006.  Sleep deprivation is no fun and games.  It's probably one of the things that every being needs in their life. So I, of course, don't get any. DJ does not sleep. I'm not kidding nor am I exaggerating.  He's never really slept through the night and I just chalked it up to a phase. But as we approach his 3rd BDay next week, I fear that I nor him will ever sleep. It started out innocently enough. I would hear him in his room awake and he would eventually fall back asleep hours later.  But as he got older, it all changed. Coupled with his not sleeping came the screaming. I'm not talking about crying either. It's screaming, as loud as his lungs allow.  It's very sad to see your child just screaming for no particular reason. Those I...

When I look back at the last year, May 2010 until the present, I say to myself, "Damn! You're still alive and kicking!" It has been a tough one for me personally, especially with DJ. I'm still trying to figure out how to constantly be a model of what I want him to learn and how I'm dying for him to someday be able to speak to me. I'm more fortunate than most parents with a child with special needs. I know how much he loves me, he's very affectionate and loving. But I wonder how this world is when he's looking out at us. Does he want to be part of our world too? He's had a lot of changes this year too. Several new people were introduced in his life and are working towards getting him to the next level. But he's had a great loss too that I feel affects him still to this day. In February 2008, while I was pregnant with DJ, my abuelo passed away.  Needless to say it was devastating, but it was more so for my abuela. She now had to uproot in l...

When you have a child with special needs, you definitely have to take a step back and see who are truly your support system. In this autism world, you lose a lot of people. Let's face it, there aren't too many people out there that truly understand a child with special  needs. Having more than one child can really put things in perspective. Dj is usually the odd man out. He gets excluded from things that his big sister doesn't.  And while he hasn't a clue what's going on, one day he will.  I try my best to protect him because when he gets excluded it hurts. I was raised with a take it or leave it attitude. If we all can't roll together, that none of us can. But not everyone is accepting of that. I'm going to live the rest of my days shielding DJ from strangers leaving him out because he's "different". But when it starts to happen in your own backyard, that's when it's the most hurtful. So what do I do? Let it happen? Start a war? ...

Before this whole diagnosis thing, we were just a family trying to adjust to each other. I guess after DJ turned a year, I started to realize that there may be something wrong. Working with kids gave me a little more insight into a child's world. I watched DJ for a while as I compared him to Adriana. I decided to ask his doctor for a referral to Early Intervention. Then came all the evaluations. That was October 2009. The outcome of the first set of evaluations proved that he was fine. Bull! I know he wasn't. At the very least, I knew he had a speech delay. He was silent, too silent. Then May 31st rolled around and Daisy the psychologist just kicked me in the gut. On May 31st, DJ received a psychological.  Daisy looked so concerned as she asked me questions in regards to his behavior and observed his current set of behaviors. The evaluation took an hour, tops. Then she said it. "Daniel has pervasive developmental disorder." Huh? Never heard of it. Then she expl...

DJ was diagnosed with PSS-NOS in May 2010. PDD-NOS is a pervasive developmental disorder, off the Autism Spectrum. Yes, folks. Autism. I thought to myself at the time, "How the hell did that happen?" It was horrifying. The only person I knew with autism at the time was my nephew. I lent encouraging words to my brother when his child was diagnosed. I gave him all the pep talks in the world and then it happened to my family, 2 years later. I was 4 moths pregnant with my youngest, struggling through pregnancy while juggling an out of work husband, a preschooler and DJ, a toddler. Then they tell he's autistic! Damn! How'd my husband take it, you ask? I still don't know. It's a bitter pill to swallow. The only boy in our pretty little family, what would become of him? Would he be the suave young adult breaking hearts whenever he lands? Would he become a professional athlete and have millions of adoring fans? A young entrepreneur? All those dreams I had when I...