Tuesday, January 18, 2011


My Joe...my first experience with deep grief...and the one that showed me the path to true love and acceptance. He's my 2nd...was the cutest baby and so much fun. I had severe post partum after Joe and some of it is a blank. Ron and my family have filled me in....and the pictures and video too. When Joe was 2 1/2 I had just had Sam...and the boy that liked to puddle jump disappeared! He stopped talking, started flapping his arms, jumping on beds, furniture etc....I protected my nursing baby thinking at first Joe was just PISSED OFF! Two months later I realized that Joe was gone...he had left the building! Called the child development centre and within 2 weeks a speech therapist appeared and told me...Your son is autistic! What? What does that mean? It took him 4 months to say ONE word...BUBBLES! Enrolled him in preschool with supported care, speech therapy, OT..etc...but it took 10 months to get to see the "specialists" for a diagnosis.

My depression threatened to return...but I got MAD! FUCK YOU AUTISM! I wanted my son back and fought like hell to get him. Kind of like that Poltergeist movie where they try to save the little girl....call in the experts...listen to them....learn as much as you can...and be willing to throw yourself into it with all your heart and soul. I learned a whole new lingo, met with professionals and enrolled him at the FV Next Step Autism program...where we met Anneka...the single most influential woman to Joe for 3 years....my guru of intervention...our gift! She encourgaed me to try this and that...even though the experts were telling me not to. Always challenged that boy...you think I will park there? NOPE! You think we are going home after school? NOPE! Any little thing that he had to have I took away...always! They kept telling me to have a "schedule" and to have a picture story for every occurance...Yeah right! By this time I had given birth to Ty...so I had an 18 month old, a new born, a 7 year old that had just moved towns...and a very autistic boy...oh..and a husband in Mexico. Enter my Mom! She took over the home front while I battled for Joe and did all the extra stuff.

Joe had to go with the flow...and he progressed! He had tremendous support with MACL and his weekly outings. He had tremendous support with Anneka and he had a mother that would not take NO for an answer! He starting speaking a bit at 5...mostly repeating movies etc..echolalia. The first time he did this..which was the MOMENT I knew he had it in him was when I played Skynards "Sweet Home Alabama" and after 2 listenings he sang it word for word. HA! Got ya! Half way through kindergarten he got a new EA..Mrs. Workman! Tearing up thinking about her....the greatest gift to Joe as a support and teacher. By grade 1 he was talking...by grade 2 he was reading...and now in grade 4 he is one of the smartest in his class! He had Mrs. Naughton for 2 years as well...one of the most gifted teachers on the planet...and a good team mix with Mrs. Workman. My autistic boy that used to bite himself till he bled, spread his poo everywhere!...rock back and forth....never make eye contact...line things up instead of play....scratch his eyes till they were unrecognizable...IS HERE! And funny! And smart! And does not stop talking! And LOVES! And observes and fits in..though he has quite an ego..lol...Most people have no idea that Joe is on the ASD sprectrum...and are shocked when they hear. :)

So NEVER say NEVER! And always trust your instincts. And push to get the best for your child....can't even count how many meetings I have been to..most times just me and a room of 6 or more professionals. BE their voice and don't feel like you are not the expert because you ARE! That is YOUR child! You know them better than anybody! And FEEL the grief...share it...cry...hug...love...it's all part of it.

Joe's journey is far from over and we will have many a bad day to come...teenagers! UGHGH...lol....but I know that he has the foundation to get through it....and he has fought so hard to be HERE! HE is the real hero in all of this...HE wants to be present and enjoy and laugh and learn.....the real lesson for all of us.

When a boy in a bubble can learn to break through and thrive than any one of us can too.

Grateful is an understatement! XO


  1. Thank you for sharing this! You're an amazing mum and advocate for Joe. I have another mum that really needs to hear this right now and I plan on sharing with her! You both rock!

  2. Colleen...your friend is welcome to call me and I will go into any meeting with her and be an advocate for her child along with her. I volunteer my time for autism meetings and just to talk. ESL Moms too....those are the hardest...the tears just flow as the culture blames the Mom. My shoulders are wide and open!

  3. Susan,
    What a gift this blog is. You have a wonderful writing style and your passion SCREAMS off the page.
    Thank you

  4. Thank you Kim....trying to be as honest as I can...so the passion follows!