We are MOVING! June 1, 2009
Posts have been scant, as of late. I’m starting my pet walking/sitting again, and Ronan James has been partaking in a great deal of social/therapeutic activities. It’s been really good for our spirits, but not so good for succumbing to the muse
HAPPY BIRTHDAY RONAN JAMES!!! May 17, 2009
Ronan James turned 7, yes SEVEN, years old yesterday…
Waah. Wahhhh. WAAAHHHHH!!!!
How is my baby 7 years old? The other day, I was holding that honey baked ham in my jacked arms (they were so jacked…he was the fattest TUB ever! see post entitled HE WAS NOT SMALL) and snuggling him on the couch for our daily nap…
Now, he takes up the whole couch. But I still wiggle my way around him for a snuggle.
Happy Birthday my RO!!! I LOVE YOU!!!
Baby Ro gets ready for brother Lowie to be born...wasn't this yesterday?
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!!
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
Autism Everyday April 3, 2009
Appeared at the 2006 Sundance Film Festival Honest and unvarnished, Lauren Thierry’s revealing documentary conveys the everyday realities of being a parent of an autistic child. One in every 166 children in the United States is now diagnosed with autism, yet most Americans are ignorant of its details and the challenges faced by dedicated parents. Thierry, herself the mother of an autistic son, raises awareness by profiling eight children and their parents, who have endured not only exhausting financial and emotional burdens but also shame, guilt, criticism and ridicule.
http://www.sundancechannel.com/films/500317006
This is set to air on the Sundance channel this weekend. Check it out!
Is He For Real? April 1, 2009
When I was in Kindergarten, I ate the paste (well, Ro does that too, but that’s another post). I certainly didn’t know how to do any pirahna addition and subtraction.
How’s Mama going to help this kid with homework in 4th grade?
Wait…he won’t need help! That’s right! Sweet!
The Loudon of the Day April 1, 2009
We are watching SpongeBob, and it’s an episode where the usual is happening – someone is hitting someone with something.
Loudon is laughing hysterically, and then he bonks Mama on the nose, Patrick Star style.
Hmm. Mama doesn’t like this.
Mama: Lowie! SpongeBob is a cartoon. It’s pretend. We are real people, and we don’t hit each other!
Lowie: (thinking…) Mom, I want to be SpongeBob…so I can HIT SOMEBODY!!!!!
This diablito is going to give Mama a run for her money…
Hi, This is Autism. March 31, 2009
A long time ago, back when Ro first got his diagnosis, I almost made matching shirts for us both, emblazoned with that bold statement.
Yes, this is me going back to the same old argument about labels, but I have new thoughts almost every day on this subject, so I must shaaaarrrrrrrrrrrrrreeeeeeeeeee with you! lol
Last week, one of my big sisters, The Tray, who just happens to have a 12 year-old daughter who is diagnosed “aspergers” was chatting with a fellow school parent about mundane kid issues.
The Tray mentioned something about my niece’s aspergers, to which the parent replied, “AUTISM!!! I didn’t know she had AUTISM??? Why didn’t you ever tell us??!!!!”
The Tray, being The Tray, replied, “Well, I haven’t needed to tell you about her diagnosis thus far…would you like me to tell you her bra size, because that’s pretty much equal information divulging???!!”
Okay, maybe it didn’t go down like that verbatim, but knowing The Tray, that’s how I imagine it, and I bet it’s pretty close.
Anyaut, this brings me back to my constant contemplation of label etiquette.
I don’t introduce my son as, “Hi, this is Ronan. He’s six, and he has AUTISM!!! AUTISM!!! AUTISM!!!
Why does Mama need to share that on the first date? It’s not like you will need a HAZMAT team to come and diffuse him! I can see my need for divulging diagnoses if you are a therapist that needs to work with him, or if he does something inappropriate socially that may make someone offended.
But really, do I need to announce this upon meeting new people every time? Why not say, “This is Ronan, his IQ is over 140 and he can recite all the states and capitals in 40 seconds or less!” Or why not share, “This is Ro, and he hates helicopters, but he can add and subtract far beyond his years! Isn’t that special?!”
It’s a tough road to navigate.
I was talking to a mother last week who has a child that goes to school with mine, and she just couldn’t get past how he seemed “different” from all of the other kids his age. She was just so embarrassed by all of his behaviors, and she had such a hard time with his uniqueness.
Look, I don’t want my kid to misread “social cues”, in fact, he’s taking special courses and incorporating “social education” into his therapy schedule every day, but what I don’t want, what I worry about sacrificing, is his individuality – his strengths, his admirable qualities – his fabulousness…
Does that, should that, need to be sacrificed with the “autism” label?
To that Mom that worries about her boy being so “different” - will your child resent you for really wishing he fit into a round peg when he is square all along???
I thought her child was lovely.
I think my child is lovely.
I think my niece is lovely.
Sometimes, even though I know he needs to learn a different way, even though I know it carries pain, I think AUTISM is lovely.
I don’ t love that he has hurt… what Mama does? But I love my child with AUTISM.
Label or not.
That means nothing.
And he means everything.
