Mr. Holland's Opus

I want to talk to my child and have her respond to Me? I know I am asking for the world to start spinning in the opposite direction and for Republicans and Democrats to start getting along and for J. Lo to have a single release that is actually a good song but I'll I'm saying is It's lonely talking to yourself. I carry out full conversations with Maggie never saying a word. It doesn't make any sense and I'm pretty sure I am slowly losing my mind but I still do it with the hope that one of these days she will respond...

So I'm watching one of my favorite movies, 'Mr. Holland's Opus' and this scene of the teacher(glenn) and his wife(Iris) discussing their child's future comes on and it goes as follows...

[Glenn and Iris are discussing the possibility of sending Cole to a special school]
Glenn Holland: The doctor said that gestures meant...
Iris Holland: It's way more than gestures.
Glenn Holland: That gestures meant that Cole would never learn how to lip read or to talk!
Iris Holland: He can barely talk now, he can't say two or three words!
Glenn Holland: The guy is a specialist, Iris!
Iris Holland: Ohhh, he's a specialist who thinks that deaf people are retarded and he is not retarded. Cole!
Glenn Holland: What does he want? Give him what he wants!
Iris Holland: I don't know what he wants, I don't understand what he's trying to say. Don't you get it? You walk to school every day with all these children who are normal. I can't talk to my son! I don't know what he wants or what he thinks or what he feels. I can't tell him that I love him, I can't tell him who I am. I want to talk to my son! I don't care what it costs, I don't care what the stupid doctor says it's right or wrong. I want to talk to my son!

(bursts into tears and falls on floor with child...I added that but it's true)

I don't know what he wants or what he thinks or what he feels... Sometimes a face makes up for a thousand words- Maggie will shoot this glare as if to say, Mother!?! or Are you kidding me right now?!? She also has this look of disgust as if she is completely annoyed by me or another person and I must take care of it! She really can be quite facially expressive.

I don't care what it costs... Maggie's MA expires in April and I have no idea how I am going to cover speech for the next few months but I am going to make it work! I know at least for the next few months possibly year or so her therapy is covered but I think about long term and loose sleep over how much money this child will cost. The countless hours of therapy and specialists and driving back and forth to doctors and tank after tank of 4.00 dollar gasoline and hours spent in rush hour traffic. She is worth every minute, every dollar and every once of stress that I am overflowing with these days.

I can't talk to my son... I can talk to my daughter but if she is listening or paying attention or remotely interesting is doubtful. I feel as though through one ear and out the other most days.

I want to talk to my son! ... I want my daughter to talk to me so badly! I want her to say something funny to remind me that she is in fact related to me :) I want to talk to her and know that she is absorbing it and understanding what I am saying to her...

Am I asking too much??

Reminder that April is Autism Awareness Month

Chewy Tubes

How Chewy's took over My Life... A long time ago I thought things like, "Where are my keys?" or "Where is my phone?" now I seem to constantly say "Where is a chewy?" I can't escape it! It's like the blob in a horror movie. At one, very well organized point, I had a chewy in my purse, the car, the diaper bag, her bedroom, and a few in the living room. 

Now I am down to one (and yes I am singing 'one is the loneliest number' in my head.)

I don't know the exact day or time when my brain turned to a focus driven force to always be aware of the exact location of the Chewy's in the house but It happened. 

I know, I know they help with oral motor, oral strength, sensory processing, speech & I'm sure other valuable ways. And we can't seem to go anywhere without them so whether I was prepared for this or not the Chewy Tube has become part of the family!

Various chewy's - prefers the green and yellow

Oh and did I mention these babies are 'Adaptive' Oh yeah!! $10-15 a tube. And don't get me started on the vibrating chewy's they start at $25 - On AMAZON of all places :)

Sh*T

I was sitting in the waiting area yesterday while Maggie was with her Speech therapist. A fellow parent who I exchange experiences with was sitting next to me patiently waiting for her son to finish up his therapy. Maxwell is 5, about 2 weeks younger than Maggie. He is completely adorable. He has more words than Maggie but for the most part just makes sounds and avoids all eye contact. His mother, Naomi was telling me about how her husband has become increasingly strict and into enforcing eye contact with Maxwell. As we laughed and joked she honestly said "I would be happy if Maxwell would just say he's mad instead of looking away or hitting someone" another woman, not a parent but a PCA, butted in saying "well I would be afraid if what he wanted to say was inappropriate!" Naomi, whipped her head around shot her a look

lady, don't judge and until you've walked in my shoes...

That place where your desperate for any word to come out of your child's mouth

At that moment, Maxwell came from around the corner and like everyday he was avoiding looking at any of us. Mumbling something to himself. Walking towards the empty corner so he wouldn't have to be near any of us. Naomi grabbed Maxwell's arm to put his coat on and instantly he started to get worked up. Annoyed and starting to get physical. Naomi looked at me and joking said

"I wish he would just say, This is Shit Mom!"

We all laughed and thought this cute little boy doesn't even say 'ball' or 'mom'

Naomi got Maxwell to make eye contact with her and focused him long to enough to say

"Maxwell are you upset? You don't want to put your coat on?"

Maxwell looked away and Naomi moved his head around and asked him again

Maxwell looked right at her and said

"It's shit"

Naomi was so happy she was smiling and crying. We all were laughing and getting emotional for Naomi and for Maxwell.

The Normal Parent would probably be mortified if their child said a swear word. Embarrassed and probably worried about anything else they might have said that their child could repeat. Gossip, a joke, an unkind description of a person etc. But for a parent of a child with Speech limitations and especially Autism.

We will take ANY word!

EVERY word! Sound. Sign. Anything!

As I see it. The "S" sound is important in many words. Maggie chooses to hiss when she sees a picture of snakes. It makes her super excited and we understand her "S" and that gives me joy that she, on her own, created a sound with the correct word/object (in the word of Speech therapy it's a big deal too)

One day at a time. One word at a time.