If you are in the Boston area tonight or tomorrow night, go see a great show put on by Emerson Stage (and my niece is starring in it!!)
Break a leg, Chelsey!!!!
http://www.maj.org/P2009/es_whorehouse.html
Inclusion -Mama Needs You to See This, Now! April 24, 2009
I always say that I haven’t slept for seven years. I was so excited when I got pregnant with Ronan, that I had a really hard time catching some Zzzs. When I had him…well, that was another post entitled, FOR THE LOVE OF GOD, WHEN WILL THIS CHILD SLEEP!?
It’s seven years later, and my Brain 2000 still can’t sleep. I put both of the boys to bed last night, and when I finally got to my room, it was around 11pm.
Mama needs wind-down time, so I put on the tele and started flipping. I paused on the New Hampshire public television station, because I spotted what looked to be a documentary-type program about children, and Mama is a sucker for those.
What followed were two hours of wide-eyes, edge-of-the-bed sobbing, laughing and nodding in agreement from Mama.
Ronan’s IEP for next year is coming up in June. He will be starting first grade at a new school, and I am TERRIFIED. It’s so hard to explain to other people who are not in this situation how agonizingly difficult this is trying to navigate what is best for my child with Autism, in all arenas.
Education, therapy, social skills, speech, ot, pt, ABA, Floortime, inclusion, partial inclusion, aides, 1:1 aides, 1:2, 1:3, or 1:not enough aides, different schools apart from friends he has made for four years because there isn’t a good enough program at the other school, transitions that may or may not be supported by administration the way Mama thinks will be best for Ro, depending on whether or not you ask, or don’t ask the right way, or get the right advocate or lawyer or BCBA or FBA or after school/ home-school hours and therapists (not BABYSITTERS) and the wait is TOO LONG at OTA…when is the extra speech coming that BC/BS will allow at $20 per session for only 20 times a YEAR!!!
And the financial strains from the biomed route, Whole Foods owns my paychecks, and I worry about every little thing that goes into his body…do I need to do GF/CF, everything F again? Does he have yeast, bacteria, immuno-compromise, vitamin/mineral absorbtion deficiencies, phenol or mito problems, intolerances to foods, mold, environmental toxins, viruses, and what about VACCINES????? And why aren’t the therapies he NEEDS covered by INSURANCE?? Come on, Barack, when will they pass that BILL??!!!! Will L-tryptophan or melatonin or 5-htp help him sleep, or will he always be a night owl, with circles under his eyes, and exhaused 4 out of 7 days???? Am I doing the right things, enough things, do I need to be engaging him right NOW, or more times a day, and what would Stanley Greenspan say while I am typing on the computer and he is stimming while jumping on his bed, and am I a horrible autism Mom because I have my own spectrum issues????
pauuuussssseeeee….
This is just a 5 minute sampling of what Mama brain ponders on a daily basis.
I am not trying to dumb down what other parents go through with their kids, with any kids. It’s all tough. Every child has their own issues, and every parent is tested and pushed to the limits. But this documentary really opened my eyes in another way, even though we’ve been immersed in the special needs world for 7 years…I think I saw more of Ronan’s side -separate from myself. It’s that good. And it needs to be seen by Mrs. C. (who has always been a huge advocate for the inclusion piece), Mr. F., Mrs. Superintendent, and every other person who advocates or should advocate for these kids, for all kids.
This is a society that consists of all types of individuals as adults. What sense does it make to segregate one group from the other while being educated as children? What are we saying with that? How are these kids supposed to function after they are thrust into the world at 18 years old, without the skills they need to function???
We have been VERY fortunate to have found such WONDERFUL and caring and educated individuals to nurture and teach Ro for these past few years…but I am very afraid of what lies ahead.
This documentary gave me a little more hope…and I really wish that it would have the same impact on our little circle and all around…
www.includingsamuel.com
I am buying a copy, and I am giving one to all of his teachers, principals and administrators.
Huge kudos to Dan Habib for creating such a moving, informative and mind-altering look into his and other’s thoughts about his beautiful son and other lovely deserving individuals with special needs.
Here’s the youtube synopsis…
http://www.youtube.com/watch?v=Xfg1pswiOgM
p.s. How beautiful are Habib’s two boys??? I, being a Mama of two boys, was especially touched by the relationship between Samuel and Isaiah. I really believe that Ronan and Loudon will have the same love bond (they really already do!) that made me sob in this docu.
**UPDATE** They are airing it tonight on NHPTV at 10:30 pm! I am watching it again!!!
Shameless Hallmark Moment April 20, 2009
We went to a Patriot’s Day celebration today, complete with a fantastic parade, delicious food vendors, balloons – the whole works.
The boys were having a blast, and then we saw this HUGE flag…must take picture.
Of course, Mama forgets her camera, so we only have the phone to snap a memory. Not the best quality.
Well, of course the first thing I do is lament the fact that the boys aren’t looking at the camera. Then, I have to self-deprecate, because it’s just fun.
Mama looks bald. Mama looks like a Cabbage Patch Doll. Can I ever not look like I am going to a funeral?
Then…I see my hands. They are resting over both of my boys’ hearts.
For some reason, this really touches me. They are so small and vulnerable now, but I am always going to be there.
With my hands over their hearts.
Even if Mama really do look like a damn Cabbage Patch Doll.
Boston Rocks! April 20, 2009
We went to the Public Gardens and The Common yesterday to visit Auntie Snackie and Scientist Carl…
Could it be any MORE gorgeous and fantastic this side of the Charles at Springtime?
Here’s Ro and Lowie enjoying a rest on a bench in the Gardens…
Don’t they look like they are on a soon-to-be imploding date??…
Lowie, who looks exactly like my trampy Puerto Rican father, is checking out some fine young chicks, and Ro, who’s his Dad’s serious clone, is SO OVER that shiz.
Anyshiz, they had a blast, and Mama did too!!! Thanks Aunts and Uncs!!
The Loudon of the Day April 16, 2009
We are snuggling in a patch of sun on Ronan’s bed together. Lowie is resting his head on my stomach and gazing lovingly into my eyes…I am the luckiest Mama on earth!!
Lowie: (confused expression on face) Mom. Why is your belly like a hill?
Mama: (at first confused, then resigned) Hmm, a hill, Low?
Lowie: Yup, a hill…(lifting his head off of my hill to get a closer look at my face…disgust is his expression) MOM!!! WHAT is IN your nose???? Is that HAIR???!!!!
Oh, man, I feel so young and hot today! Thanks Lowie. lol
Pre Music Syndrome April 10, 2009
Alright, already! I can’t stop with these songs!!! This one reminds me of driving through Malibu Canyon while I was pregnant with The Loudon. It was in my questioning phase…what could I have done different? What can I do different now? Who’s at fault? I am to blame.
Hoobastank probably wrote this one about another strung out beyotch, but to me, most songs are about my boys. lol
http://www.youtube.com/watch?v=3Q30-2QpZVc
I’m not a perfect person
There’s many things I wish I didn’t do
But I continue learning
I never meant to do those things to you
And so I have to say before I go
That I just want you to know
I’ve found a reason for me
To change who I used to be
A reason to start over new
and the reason is you
I’m sorry that I hurt you
It’s something I must live with every day
And all the pain I put you through
I wish that I could take it all away
And be the one who catches all your tears
That’s why I need you to hear
I’ve found a reason for me
To change who I used to be
A reason to start over new
and the reason is you [x4]
I’m not a perfect person
I never meant to do those things to you
And so I have to say before I go
That I just want you to know
I’ve found a reason for me
To change who I used to be
A reason to start over new
and the reason is you
I’ve found a reason to show
A side of me you didn’t know
A reason for all that I do
And the reason is you
Fix You April 10, 2009
This song is probably about some junkie girlfriend that Chris Martin was trying to save, but back when I was SO obsessed with “fixing” Ronan, this song would make me bawl in 2 seconds flat.
It started playing on my ipod today, and I cried in 3 seconds flat. It’s a new record for Mama!
Even though my focus has changed from “fixing” to “making happy”…it’s still raw emotion for me with this tune.
And now, for your PMS pleasure…
http://www.youtube.com/watch?v=jBEYyHGbwto
Fix You by Coldplay
When you try your best but you don’t succeed
When you get what you want but not what you need
When you feel so tired but you can’t sleep
Stuck in reverse.
And the tears come streaming down your face
When you lose something you can’t replace
When you love someone but it goes to waste
Could it be worse?
Lights will guide you home
And ignite your bones
And I will try to fix you
And high up above or down below
When you’re too in love to let it go
But if you never try you’ll never know
Just what you’re worth
Lights will guide you home
And ignite your bones
And I will try to fix you
And the tears stream, down your face
When you lose something you cannot replace
Tears stream down your face and I…
And the tears stream, down on your face
I promise you I will learn from my mistakes
Tears stream down your face and I…
Lights will guide you home
And ignite your bones
And I will try to fix you
p.s. Doesn’t Chris Martin even look a little like grown Ro? lol
Here’s Lowie making Ro happy! lol
Another Ronan of the Day April 9, 2009
I always wear my hair up, because I have an awful habit of twirling and biting it when it’s clean and down. It’s a sensory thing.
Ro can’t stand it…
Ronan: MOM! Stop biting your hair!!!
Mama: Why Ro?
Ronan: Because it’s really bad for you, Mom!
This is the same child whom I thought might never even refer to me as “Mom”. Ever. I waited soooo long to hear even that, and when he actually started to call me Mom, I thought I would die of happy.
To hear him say something like this is so surreal. It makes me cry.
Pithy, and true.
The Ronan of the Day April 9, 2009
After inspecting the contents of our under-the-sink bathroom cabinets (which he has memorized)…
Ronan: (panicked) MOM!!!
Mama: (equally panicked) What Ro?????!!!!
Ronan: Where are your Ultra Thin Maxi Pads????!!!!
Hmm. Ro, I don’t think you really need to worry about those.
The Loudon of the Day April 7, 2009
We are being silly. I don’t know if it’s a full moon, or if it’s just this crappy Boston weather, but goofiness is at an all time extreme…
Loudon is spinning around and around, and I am telling him that he will fall if he doesn’t stop.
Loudon: No, Mom. I won’t fall! I’m just being silly! I’m careful!
Mama: Low, you are going to fall…
Lowie: I won’t!……………..
He does a half-spin, and then he takes a header directly into the mesh toy bin next to him. I mean HUGE, big clumsy fall. Limbs flying everywhere, confused expression on his face.
This is awful, but I will admit it anyway…Mama laughed so DANG HARD, and so long, and I couldn’t catch my breath!!! I am serious!! It was a half-hour long chuckle-fest that I couldn’t control!! Awful Mama!
Lowie watched this for its entirety, and then he spoke…
Lowie: Mom!
Mama: (hysterically laughing) Whhhaaaatttttttt????? LOLOLOL
Lowie: You are going to break your laugh box.
Hmm. Me thinks we are watching too much SpongeBob!
