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.

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

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.