One moms journey through life wondering "am I doing this right?"

Tuesday, July 24, 2012

Climbing the Autism ladder?

          I have been a Stay At Home Mom for about 2 years now. Not what I imagined to become of my career. I think being a SAHM is great for many people, I just wasn't going to be one of them. I had always imagined I would work til I was and all. I have always worked. It was what I knew and came to pretty much love. I was brought up with a work ethic you don't find too much lately. I worked hard. I respected my bosses. I gave 110%. I wanted to learn something new everyday.
       And it paid off. I was promoted within a year at every company I worked . I loved it. I had high expectations for myself. And I was going to "make" it.  In my eyes, this girl from the Bronx did really well for herself. I was earning a great income. I was the Director of Finance for a large corporation in New York City. These were no easy tasks. It was hard but worth it all to me
       I knew having children and being a working mom was not going to be easy. I knew corporate America was not conducive to having children. I figured I would try my best at the work life balance thing.
Wow, what chaos my life had become. Three months after having Angelina I was back in the rat race again. Yep...up at 6 AM, feed the baby, run out the door when grandma came in at 7 and catch that 7:20 train into New York City. I worked like a dog all day and thought about Angelina every 5 minutes. I called home to get updates a few times a day. Home by 7:30. It hurt like hell not being with my little angel. For those who may not remember, Angelina was premature...9 weeks early. Yep, I was already concerned about her health as a preemie and leaving her everyday was not easy at all. I cried many nights lying awake thinking I was a horrible mom. It only got much worse when Angelina was diagnosed with Autism. "How the hell was I going to do this?", I  often told myself. There was so much research to do on Autism. I didn't know a damn thing about it. I was horrified about everything. But, I said I would handle it all. I worked really hard on my career and didn't want to give that up. We also needed my income. We were living a comfortable life and believed we would never have to worry about financial struggles. We wanted all we had. So I continued my role as Director, yes managing a department of 25-50 people at work. And 10 therapist coming in and out of my house for Early Intervention for Angelina. It was pure insanity.
Yes, my mother in law babysat everyday for us but I couldn't expect her to keep track of the progress with Early Intervention. So I would call every therapist two times a week for updates and hear first hand on the status of Angelina's delays. This was a full time job too. Learning to care for an autistic child is very labor intensive. It's incredible how much  information is thrown at you. And I needed and wanted to know every bit about it.
As the months flew by, I knew life was changing quickly for me. My career was not as important as I thought it always would be. What was important to me was spending time with a precious child who needed me more than anything else in the world. A child who experienced life differently than most. I needed to understand her more and help her more. I knew climbing the corporate ladder would never gratify me as much as climbing the Autism ladder. That would be well worth the journey.
I know do part time work selling kitchen products that I love and as a diet counselor ( my passion). These jobs may not be glamorous but they fulfill me and give me the time to focus on life's real joys. My family.

Who would of  thought?

Tuesday, June 12, 2012

Ten Things Autism Has Taught Me

1) Patience- We all wish we had more of it. Since Angelina's diagnosis I can honestly say I have improved greatly in this area. I must speak softly, expect to repeat things often. I know I have to take a deep breathe some days when she has meltdowns, spills her food on the floor, poops in her pants. I know the day may be filled with the unexpected. Patience helps ( so does her bedtime and a nice glass of wine).

2) We all need help- Over the last few years I have met many new, good friends in the Autism community. So many are new to this world and need help. I try my best to inform new parents of autistic children what helped me and what I learned through my experiences. I love to talk to mothers and fathers about our struggles. I love to learn and share. I hope we can all benefit  from each other.

3)Ignorance and Awareness is everywhere- Everyday I am amazed how many people know so little about Autism. Why? It's everywhere. I hope people want to know and learn about it. I know awareness is the only hope for improving our kids lives. On the same note I meet people often who know Angelina is different and really try to care and help and WANT to connect with her. That's awesome
4)Don't judge a book by its cover- I pride myself as someone who always cared for the odd kid. I had friends from all different groups...nerds, jocks, dropouts. Some of the people you meet in life who are most different from you, can be the ones who will teach you the most about life.  I want to always be able to say I made the effort and time to get to know someone. You may be surprised who could be one of your best buddies.

5)Feeling sorry for myself or my daughter will get me nowhere- Yeah..I learned this one pretty quickly. Get to it. My husband constantly reminds me of this on my weak days. I have to much to learn and do for us. Anyway, most days I truly feel I have one of the most special, beautiful daughters in the world. What's too feel sorry about?

6)Smell the roses everyday- Life's crazy. Plain and simple. The rat race, schedules, money issues....yuk!!! I want to enjoy the plain simple beauties of life....namely my family, a cup of coffee, flowers and a good reality show!!

7)Trust thy neighbor and ask for help- Yep. I believe I am still working on this. Trusting people who can help my Angelina. That's a hard one for me. Half the people I talk to everyday are just about as clueless as I am on Autism. That may not be entirely fair. I know that are a few who really have helped us. I keeping trying the trust thing everyday in some new way. And help...we often need it a lot. Sometimes just from pure exhaustion. I need to continue working on the HELP thing. I am really trying.

8)Crying is okay- Yeah I know I said in #5 feeling sorry will get me no where but a good cry now and then feels good. I often just need to shed a few tears and then get back to reality. Emotions are real.

9)Surprises are not always fun- Angelina needs a lot of structure. She can have a bad moment some days if we take a wrong street home. I am a planner and proud of it. I want to be prepared wherever we go. I got the extra clothes and specific food, books, toys, wipes, music. My husband may disagree ( he does) but Autistic children told handle change very well. Transitioning is not easy. Yes...we try to expose her to new, different things often. But I still like having my stash and being

10)Go with your gut- I know my daughter best. No doubt. I know if something is wrong even when she can't speak it to me. I will always trust my gut instincts. They have helped me too often over the last few years. Words are something of a luxury for us....I truly communicate with Angelina in some many other ways than with words. Yeah...enough said here.

Monday, June 11, 2012

Just another day....

I feel mushy today. Yeah, what that word means to me is that I feel a bit off. Nothing too intense. Just off. Maybe because we got back home from a weeks trip to Florida. Maybe because I miss Angelina now that she is back in school. She has been my right arm all week. Maybe because I just feel some days life is hard...too hard. But I read this post from another Autism Mom blogger ( her blogs are amazing!) today and it picked me right up.

 Click here for link

Friday, June 1, 2012


Angelina has developmental delays. How many times have I used that term? I can't count the times.. There is nothing like having to admit your child has a delay..any kind of delay. My Angelina has a few. Yes, some how god above decided that our lil angel would be strong enough to handle more than one.
She would be "globally delayed" as they call it.  Children develop skills in five main areas of development. Cognitive Development, Social and Emotional Development, Speech and Language Development , Fine Motor Skill Development, Gross Motor Skill Development. Angelina still is delayed in all 5. But I believe that can and will change in time. I believe. I simply have to.

Angelina's gross motor delays include walking issues. She has severe Femoral Anteversion. Which basically means the femur bone...(largest bone between the hip and knee) did not develop normally and she now appears severly "in toed".
This abnormality was a huge issue when Angelina first started walking ( which wasn't until she was about 2 1/2 yrs old). She tripped and fell every few steps. Along with all my other worries about her well being ( at this stage she was already receiving 30  hours of therapy in Early Intervention) I was a wreck about her walking. We put her in Orthotics up to her knees. It helped her stability but was told it wouldn't solve her physical problems. The orthopedic doctors we saw gave us little information or hope. I had one look at me with a grin and say " Well she won't be any kind of athlete, for sure". Then he basically said bye. When your child is not right ( and your own mind doesn't feel quite right either) you want all the information you can get. I wanted to know it MAY get better. Success stories.....something frigging positive!!!! Or maybe just a smile.

Well this week we took Angelina to see a Specialist in Femoral Anteversion. He was located in Manhattan. I thank Chrissy Delaney for her recommendation. Dr. Scher was a ray of sunshine on my tired, pale face.
I hate taking Angelina to the doctors. I feel like it is a punch in the gut over and over.
Mostly because I find doctors to lack any kind of empathy. Bedside manner means everything to me.
Talk to me like I am a human being and just pretend like you can imagine what I am going through. Don't talk to me like I am a wall you are just reading a script to. Make me understand what is wrong with my child and that you care. Is that too much to ask. Isn't that what the medical world was suppose to do?  Helping people! Wanting to make a difference in someones life?

Dr Scher did just that for me and my husband. He came in to greet us. Listened to us explain why we were there. He spoke softly and explained everything about Angelina's condition. He told me things I never knew and believe me I ask a lot of questions. I never received some of these answers before. He talked to us for a long while...never rushing us or appearing bothered. He gave us the positive and negative possibilities to come. He can't fix Angelina's Femoral Anteversion but he  wanted to help. He made us feel better. He gave us some hope that there could be good improvements.
Hallelujah! I found an awesome doctor! Thank You Dr. Scher.

Yes...Angelina is developing. She is amazing! Beautiful and happy mostly.
Yes... I am developing too. I may really be able to do this after all.

Tuesday, May 22, 2012

It's Coming!!!!

Angelina has been talking so so much more lately. It's a joy to hear. I don't care if a lot of the speech is still scripted ( meaning she repeats sentences she hears from a video or show she's watching)! She is yakking away and that's what counts. I remember nights I would lay awake all night crying and thinking about what life would be like for her if she never spoke a word. How sad it would be not too hear that beautiful voice?
Much of her speech today is in fact appropriate. I love when she comes home from school and says to me or my husband "Can I get a hug?" Or when she is sitting on the potty reading one of her Potty training books and says " I pull down my pants and try to peep o poop". Even that brings a smile  to my face.
I am so happy with any progress Angelina makes. Even small steps, baby's all good. Progress and hope is what parents like us live for. Hope that someday she will tell me what her day was like and she will tell how she feels. Yes... I know those days will come.

Wednesday, May 9, 2012

Happy Mothers Day!

The moment a child is born, the mother is also born. She never existed before. The woman existed, but the mother, never. A mother is something absolutely new. ~Rajneesh

As Mothers Day approaches each year, I think how different, yet wonderful life has been for me over the last five and one half years. Wonderful, yes, being a mother has been the best thing to ever happen to me. Different, that too. Every woman changes once she becomes a mother but being a mother of a  child with autism has changed me in so many more ways than I expected. I don't believe the old Tina can ever exist again.
For years after Angelina was born I tried to find that old Tina. I wanted desperately to be her again. The Tina that could make everything better by working extra hard and "fixing" the problem. The Tina who could care less what the world thought about her life and decisions. The Tina that didn't need anyone else help or guidance. The Tina who loved to climb the corporate ladder. The Tina who was in control of all her life's curve balls. The Tina who wasn't afraid of just about anything in life. The Tina who could handle it all. The Tina who wanted to make everyone happy.
After having a child born nine weeks premature and soon after diagnosed with Autism I think I can safely say I have changed. I don't want to be the old Tina. I kinda like the new and improved Tina. Yeah,...she's a little less fit, aged a bit and scared much more often. But that feels okay right now.
I can't fix the Autism thing...I am trying my best everyday to learn more about it so I can help Angelina live a good life. I am trying to make others aware of Autism and what it is so they can help Angelina have a good life.  Autism is a piece of my life I have little control of. I need a lot of help everyday from teachers, therapists, doctors , friends and family to live our life. I am the new Tina who puts her faith in many different hands than just my own. I am the new Tina who now needs to rely on others to fix some of my problems and give me valuable guidance.  The new Tina can't handle everything like she use to but is doing a good job trying.
Being a mom has  turned out to be quite a different role than I had imagined. I believe I was given this special job because I can handle it and I needed to become a new version of the old Tina.. I hope so. I do know that I wouldn't change a thing about my life as a mom. I have grown in many ways and have become even stronger than I was before. I guess when you are blessed with such a gift of love in your life nothing will ever be too hard.

Friday, April 27, 2012


Angelina and I have terrible environmental allergies.  Yes, and like so many, the seasonal allergies have hit us hard this month. I have never seen Angelina suffer so bad. We do take prescription sprays and will be feeling better soon. I hope.

In the meantime, being prepared for an Angelina sneeze is like getting ready for a bomb to go off. Someone needs to scream "Incoming!!!!!!!"". I have just a second or so to run to her with a tissue . I am tripping over toys and chairs to reach which often is a futile attempt. Everything gets "slimed on" but the tissue.
I have found Angelina wiping her nose this week on :

-her shirt collar or sleeve... of course
-the throw blankets on our couch
-our dining room curtains
-our bedroom sheets
- her singing stuffed teddy bear
-my dish towels
-her soft covered books

and my favorite victim-

-mommies hair as I am sleeping next to her.

I know most of you are grossed out but what are you  to do.??  I wish I had this contraption I saw on another blog to attach to her head. That wouldn't attract too much think?