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 90...kids 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
prepared.

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

Development

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 steps...it'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

AH- CHOOOOO!!!!!!

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 attention....you think?

Sunday, April 22, 2012

April Is Autism Awareness Month

Thank you to everyone who wants to know more about Autism. The more we know, the more we can understand..... and the more help, support we can give.

Many of you may have already seen this video which appeared on the news. I'd like to think this is the way most people would react in the same situation.  This is REAL life for many of us.


Click Here  to watch the video.

Tuesday, April 17, 2012

Taking Trips

We visited family this past weekend. They live outside of Washington DC. Every time there is a trip planned I get anxious. Honestly I get anxious about a lot of things. Always have but more so since Angelina's diagnosis. Going places isn't always easy. Sometimes they are... but sometimes not. Packing for a child on the spectrum is a job and a half. I have to make sure we got everything that makes the  trips as close to structure and routine as possible. Familiar toys, familiar foods, familiar shoes, melatonin to sleep, extra clothes in case of "accidents", IPAD...please don't forget the IPAD.  Its our little treasure. 

Angelina loves the car rides. She puts her head out the window and its the best smile I have ever seen. She is such a cutie pie. She sings and reads and has a ball sitting in the backseat for nearly 5 hours. What a champ. I of course am not as comfortable. I am worried she will have to pee and not be able to communicate this to us ( Angelina does not able to yet communicate to us that she has to use the bathroom. We are not sure if its a control thing, or if she just doesn't know when the feeling or process is coming. It is a challenge and we have had many accidents in many different locations). or that she may get car sick since there was a period last year when she would vomit if a car ride was more than an hour. These are the many things going through my neurotic mind. Its hard to be me and have a child who doesn't fully communicate. I am guessing all the time. But...she didn't pee or trow up on this trip. She was a perfect passenger ( Daddy wishes he could say the same about mommy.)

Our trip was very nice. However, Angelina was not as comfortable at her uncles condo as she was in the car. She said " I wanna go home" at least ten times a day. If we were out and about not so bad but inside was a different story. Our last vacation to Disney last September was quite different. Angelina loved the plane, the hotel and the parks. We never heard "I wanna go home". I think that trip led us to believe Angelina was a full fledged traveler. Not quite just yet.  This weekend sleeping was a challenge as it has always been. She wants mommy and daddy to snuggle with her. Not always the most comfortable way to sleep. And then there were allergies this weekend. The spring bloom was tough on Angelina. She sneezed and scratched her itchy eyes terribly. This made her very tired and cranky.

In all honesty my sweet Angelina has been quite a trooper in most "away from home" places. She is now more flexible and more able to transition. She usually entertains herself with some help from mommy and daddy. Things are quite different from the tantrum filled screaming days we use to know.
Yes....things are getting better.

Wednesday, April 4, 2012

Us too...someday?

Recently I had a couple of fellow special needs moms tell me there child no longer had a diagnosis. They were undiagnosed. Wow...that's great to hear. Its always encouraging to hear such hopeful stories. See the smile on the moms faces. I am truly happy  for anyone who receives that great news.
While I feel so many different emotions on the topic, I can't lie that I have the thought "why not Angelina?  Why not me?"
I start dreaming of all the things that would be different if Angelina was undiagnosed. She and I could talk about her day...everyday. We could go shopping together and pick out pretty clothes for her to wear. We could get our nails done together. We could.....
But then I look across the room at Angelina and I know what I share with her right now in time is enough. We have our own special moments...we laugh together, we talk our own language to each other and we snuggle all the time. We love each other more than anything or anyone can imagine.

That's plenty to be happy about.

Friday, March 9, 2012

A Special Dad

Nineteen years ago today I lost my father. I loved him dearly but....
we had a different, complicated relationship. I have always wished I knew him better, understood him more, and had a closer bond. A daughter needs a close bond with her daddy.

My husband Chris and our Angelina have that bond I wish I had with my father.
There is a love there that all little girls wish for. Pure joy and deep love. Not sure who loves whom more. Angelina looks adoringly at him with a big smile that could break your heart. Chris looks at Angelina with such pride and calls her his hero. He believes there is nothing she can't do. He believes she is as special as they come. And it has nothing to do with Autism. He loves her for every little song she screams out of her lungs and every little dance she makes up. He loves her for her stubbornness and her wet kisses. He cant wait to see her everyday and loves to carry off to bed when she snuggles up to him at night. He loves her for all he knows she will be someday and all she may not be.

He simply loves her and tells her so everyday!

Even more than wishing I had that kind of relationship with my father I had always wished for that relationship to exist for my daughter.

I am so lucky!

Monday, March 5, 2012

Miss Angelina

My little princess slept through the night. AHHH! What 7 hours of sleep can do for you. I feel like superwoman today. I did a million things by 11:30 this morning. Couldn't stop me!!!
My first task as supermom today was when the princess decided she prefer to pee pee on her chair than on a potty. I guess I understand that....she was reading several different books at 6:30 AM in her playroom ( like an angel) and then the feelings comes....why stand up and tell mommy you have to pee. Why not just let it loose right there, right then. Then she proceeds to take off her pajama pants and underwear and read butt naked. As I came up the stairs with my coffee feeling like a champ I peeked in at her and saw the nakedness. I instantly knew...but couldn't find the evidence . At this point she was on her way out of the playroom running down the hall. I searched every room wondering where was the PEE???? She tossed her clothes behind her bookcase and the puddle was under her desk.Good ol Resolve carpet cleaner....we are pals. We fight in combat together against smelly Angelina odors.

I forgive Angelina as always. My lil princess is still  challenged when it comes to recognizing when she "has to go". She hasn't been able to verbalize it to us yet. But she will someday. She will someday no longer leave me pee puddles...no longer run up and down the halls butt naked..I will no longer have to buy cases of Resolve ...someday. That's ok.

Thursday, February 16, 2012

Always Remembered

Losing a loved one is never easy. I have felt this pain a few times in my short life.
I have learned to accept loss, however painful it may be. Remembering the wonderful times I
shared with my loved ones has made the loss easier to deal with. I no longer want to cry when I think of them... I want to smile from the happiness they have brought to me. I have been blessed in many ways to have had their love in my life.

Though I miss you terribly....I will smile when I think of you...which will be so often. You will always be in my heart and always remembered.

Monday, January 23, 2012

Reality Check

I love to browse through posts that my  fellow bloggers write. Most are so poetic and so captivating. I read this one last night and it hit me hard. I have been following Susan's blog here and there. Wow I always think to myself. She is unbelievable. Please read this post first or else my post has no real meaning.
Susan post.

What is life really about ? Love, Hope.....Family for me. Happiness with family. Precious times.
I have to remind myself often how lucky I am to have them. I can't imagine life without my husband or daughter ( and of course my entire immediate family).
So I am going to try and remember this when I can't get Angelina to potty or when she is up in the middle of the night or when I look at her and want to cry from fear and pain to what the future holds.
I have this precious, beautiful life with her now. She is amazing and makes me laugh everyday. Nothing is so hard to handle that I should forget the love she brings to my heart. No nothing.
My life isn't perfect and yes, stressful many days but it's a life filled with love.  Living with a life filled with love. That's a great thing.

Wednesday, January 18, 2012

Too much thinking.

I often think too much. Way too much. I analyze everything. My husband tells me to stop. How? This is how I am made.

Having an autistic child who is nearly nonverbal doesn't help. I am always thinking.." what is she thinking?"  It can drive me crazy at times. I try to stop but can't turn it off.

I read an article today about a mother and her severely autistic boys. It made me start thinking about defining severe autism. I always assumed severe meant a nonverbal child who sits alone and rocks with no interaction with the outside world. Am I wrong?  This particular mother had children who spoke few words, had sensory issues, behavioral issues, digestive issues, sleep issues. My Angelina has some if not all those issues. That scares me. What does it change though? Isn't it just another label...severely autistic?
Too much to think about.

I do know for sure...Angelina is severely adorable, funny, happy and most important, severely loved!

Saturday, January 14, 2012

NAET Therapy

Too tired ( last night was NOT the 4th straight night Angelina slept all night) to get into how much I love NAET and what its all about. But please read all about it under my links. Its worth it.
I am taking Angelina for a session now.

Friday, January 13, 2012

Sleepng Beauty

Angelina has slept a full night for the last three nights. Yes!!!
It might sound like no big defeat for you but for our house its big news.
You see Angelina has NEVER been a "good sleeper". Since she was a young infant she has been waking up during the night and usually cant get herself back to sleep.I am told its a typical issue with Autistic children. Wow...its a nightmare for us. I feel like a zombie most days. Before I became a SAHM I use to go to work as this zombie. I don't know how I functioned. Probably not well because I had to stop working.
We deal with it. I usually let my husband sleep since he does have to go into the office everyday. I get up with Angelina and do my best to try and get her sleepy again. That is usually a futile effort. She is so wired when she gets up nothing helps. You would think it was the middle of the afternoon. Yes, we have tried many many different approaches to help....down time at night, melatonin, change the lighting,...nothing helps. We have been through long phases of this sleep deprivation and then we'll go through a phase where Angelina will sleep for months.
Today I am hoping the latter will come true.  I have my fingers crossed.

Thursday, January 12, 2012

Happy SAHM.....(I think).

My name is Tina. I have been a SAHM for about a year and a half now. My daughter, Angelina was diagnosed with Autism three years ago and so my world quickly changed.
Yep...my career as a Financial Executive in the big city suddenly seemed like climbing Mount Everest...and I was losing the uphill battle.
So now my days are filled with cleaning, doing errands, taking Angelina to therapies, researching the Autism world for help.

Is this how life was intended to be for me????