Keep experiencing and don't avoid.

THANK YOU! What a gift to share with us...
I've been struggling with putting myself out there to live the life I dream of and now you encouraged me more..
thank you dear you. keep on keeping on.

You know...I read your blog almost everyday. I always enjoy and can relate, but today your post just connected with what's going on right now. I completly understand you feelings of reluctance sometimes.
My little sister, Audra, has developmental delays and sometimes is it just so much easier to avoid things and stay at home, our 'safe place'. Although she is only my sister, and although I'm only 18, sometimes I feel like a 40 year old mother to her. It can be so difficult, some people don't understand, some people stare, sometimes Audra cries, sometimes I am just so weary. But everyday I keep pushing forward, doing the sometimes uncomfortable. Some days the only thing that keeps me going is the fact that she is my baby sister and I LOVE her, through the crying, the staring, through it all. Some days are good days, some days are bad. But they are all filled with love. Love for my sister by not sheltering her from the world, love for my mom and dad, simply by giving them a break sometimes. But always love.
You words of pushing forward, taking that first step also resonated with me. Tomorrow I move out of my parents house, to the big city, an hour away. I'm scared. I will miss the people who have raised me, whom I love so much. But I must take that first step to be independent, so put myself out there, to make new friends, excel at work and school, fill my life with love, new and old. So thank you, for sharing with us everyday. But thank you especially for today, for showing me that there are days when everyone wants to avoid things, but that we must hold our head up, and carry on, with love.

Thanks, Ali. I don't know where you find the minutes in your day to encourage and pull the rest of us along. Thank you.

I admire you so much for being so honest and not AVOIDING the truth of your life. Thank you for talking about the hard things in your life to help others look at the hard things in their own lives. Have a safe and wonderful trip.

Love that communication notebook! I can't even get Warren's teacher to answer my questions, forget a note every day.
Jen

once again you have nailed it. there are certain days when i get to read blogs. sometimes i go in spurts and read every day for 2 weeks and then i don't get to read my faves for a few days. but it seems more and more when i hit your blog there is a message here that i needed to hear. thank you for being that voice for me...and many others! :)

Wow Ali, awesome advice. THANK YOU. I really needed to hear that.

Ali,
every time I see a picture of Simon I am struck by how beautiful he is. There is something very deep there, we may just need to wait to see it all.
ang

Ali, I pray that each day gets better for you and Simon. I pray that you will learn patience for him and he will learn to try new things. I know it is a hard diease to understand but we have ti have faith that one day there will be a cure or some help for it. Learning is the key and you are learning everything you can. Take care and my prayers are with you and your family.

thank you for this post. what an inspirational way to look at how sometimes life is, and how to deal with it!
be safe.
blessings,
erin

this is wierd.
the note I left shows posted by ArtsyMama, and i am assuming the comment left by ArtsyMama show left by me.
I am Ang, and i wrote:
Ali,
every time I see a picture of Simon I am struck by how beautiful he is. There is something very deep there, we may just need to wait to see it all.
ang

I've been avoiding life -- just about all of it -- for so long I don't know if I can jump in... but I'm going to print your post and keep reading it over and over until I do something about me. Thanks!!

right on, sista, right on! i continue to applaud you for all you do and experience with simon, and i am all for living one's dream.

Dear Ali,
Every time I read your blog you amaze me with you wisdom, your patience, your love, you're happiness, your understanding. You are a true inspiration!!!
love from Holland
Brigitta

thanks again Ali for this wonderful entry, your post are always such eye-openers and they keep reminding me to keep working with Anthony. We have made such great progress since we made the decision to get a home-trainer, she has done wonders in our houshold. Now I am also taking your message for myself. i started to watch my eating habits this week and also started to go to the gym something I always dreaded. Have fun in Australia girl and thanks again! LOVE YA!
corinnexxx PS: I have a lo of me and Flo on my blog if you wanna see, she looks cute!

I know that you are getting a million comments on this entry, I am #76, I did not read all of you comments so if this is already a technique given, sorry. My Daughter Emilie has Sensory Integration, (A relitave of Autism) and one of the techniques that I do for her during her meltdowns is squeezing her muscles, (not hard but just enough for sensory input) and then compress her joints. Her Therapist says that she needs this input to Organize her thought process. Emilie does not like a lot of comotion, I had a Birthday Party at Build-a-bear, for my other daughter, Cassidie, and Emilie asked several times for me to squeeze her. She is getting old enough now that she knows what works. Just like your son from reading your blog & books (ok huge fan of your work) Kids with "these types" of issues, (I hate calling it a disability) are just so brilliant, and their thought process is so different that if you do sit back and experience, you can sometimes "get it" and enjoy their world. Ok, I am stopping the long post.

Hi Ali,
My name is Jessica, and I am a behavior analyst, working with children with autism. I happened upon your blog, and wanted to suggest reinforcing eating meat with a favorite food (like potatoes). For example, you would start with a tiny piece of meat. Once he eats the meat, you would then praise him for eating the meat, followed by presenting a bite of the potatoe (the reinforcer). Eventually, you will be able to increase the size and amount of meat that Simon eats, and hopefully he will come to enjoy the taste of it as well.

Hey Ali,
Loved your comments today. Here's something I did with an Autistic child I taught (also had gorgeous dark eyelashes like Simon). We played Wiggles songs - which he loved while he was doing something he didn't like - a good with the bad thing. I used to put Wiggles on his Walkman so that he could handle going to assembly. Eventually we started to lower the volume until there was no sound then we took the earphones off altogether. Maybe you could modify this in some way with Simon?
Again - have a great time! ; )
Jude

Such wise words Ali! Big hugs. Have a fantastic trip!

Wow, this sounds liek my life about 3-4 years ago. Both my twins were special needs in different ways. Seeing Simon's journal totally reminds me of Elijah and what we had to do with him in special ed pre-k for 2 years before he could move on to regular prek. He wasn't fully potty trained until well past 4, he lucked out because he looks so much younger than his age, so no one ever said much to me. For Hannah it was the changes, she did not take well to any variance of her schedule. She went completely backward for a while, wouldn't talk, potty, hurt peopl and was destructive. It would've been so easy to avoid dealing with both of these issues, but it wouldn't have helped anyone. Praise God, now at 6 1/2 they are getting ready to enter 1st grade this year and are on track for a good year. Keep your head up and remember that God doesn't give you more than you can handle. He chose you to be Simon's mom because He knew you would love him and care for him the way he needed!