Yesterday I took Julius to Torrance for another Askate event. This was our second time attending the clinic where an experienced skater works one on one with a child on the spectrum. The first time we went, in March, Julius was very timid and uncoordinated. He mostly held onto his instructors legs and rode the board with him.

It was a whole ‘nother thing game yesterday! Julius started off really rocky, not having a connection with his first instructor. After meeting Peter, Juju quickly warmed up and had a day that will never be forgotten. When Peter told me Juju had great balance, I almost fainted.

The past month has brought incredible gains. We are seeing a lot more language, spontaneous…mands, singing, and overall compliance. He is engaging, paying attention when we talk to him, responding to his name immediately. We couldn’t be happier with his accomplishments.

Enjoy this video! It is AMAZING! I am SO PROUD OF HIM!!!

Man, I have been a blogging slacker lately. Prepping for Autism One and the end of the school year was a lot to deal with. We continue to stay blessed and stressed! The conference in Chicago was like a family reunion, without the drama! Tony and I had such a wonderful time, really soaking in the sense of community and unity. Conferences are rejuvenating, and inspiring. We made many new friends, and loved on old ones.

Our Thursday night talk and trailer, Q+A, had around 200 attendees and we hope touched as many hearts. I was so proud of my courageous husband for letting his wall come down and for speaking from his heart. I hope we were able to help a few families, several relationships, and many children that night. We look forward to the next chapter in our story to share with everyone…to be coming very soon!

We came home to see Julius making more and more progress. He climbed in bed when I was napping, grabbed the remote off of the bedside table and pointed it at the tv that was turned off. He said, “Watch Gabba Gabba!” WOW. That was a first.

Today, we attended Tony’s work picnic and he was paddle boating with his Daddy. They were about 70 yards across the pond and he waved back to me, saying, “HI MOMMY!” That is huge because he has never pointed at birds, airplanes, etc, nor been able to make the connection when we are pointing at something from across the way. I WAS THRILLED!

In the car I was playing a random brass station on Pandora and when a song would come on he hated he would holler, “CHANGE IT!” from the backseat. This is awesome because he normally unleashes a blood curdling scream to let us know of his disapproval. We always prompt him to say, “change it” instead, but today was the first day he actually DID IT unprompted.

We continue to see improvements in the complexity of his speech patterns, and the length of utterances from him (instead of one word utterance, we are consistently at 3-4!!) Love, love, love it.

He is stronger, his muscles and bones are getting girthier (not a word I know and he is CLIMBING on the furniture, slides, and being ACTIVE. Cerebral Folate Deficiency!! READ ABOUT IT! Dr. Rossignol is a genius. Time to get back to work. We are SOOOOOOOO excited about the TACA Picnic next weekend!!! Hope to see everyone there!

I am afraid of changing. Changing doctors, changing schools, changing probiotics, changing aba therapists, aba supervisors, aba companies, regional center case workers, neurologists, pediatricians, jobs, respite workers, churches, homes, cars, apartments, playgroups, classrooms. Heck, I am afraid and reluctant to change brands of spaghetti, diapers, socks, soaps, or detergents. Change could disrupt the peace. That really is no way to live. I feel like that all the time. In a continuous teetering state of constantly weighing the pros and cons. I think it was all consuming me and that is why I haven’t be able to blog lately. Please forgive me. We are going though so many changes, but doing great at the same time. There have been some really really really really rough patches in the last few months but we continue to blessed.

Just keep swimming, Just keep swimming.

Preparing for Julius’ IEP kindergarten transition triennial meeting on Friday, May 6th at 8:00 am! Good Morning! I feel like the luckiest mom in the world because I have a tremendous support system in place. Both Tony and Julius’ Regional Center case worker are coming with me on behalf of Julius. Love that!! I am not alone!! I don’t know why, but I feel like it is going to be a bit contentious. Perhaps because our LAUSD rep appeared in my living room freakishly 10 minutes after I called her on the phone to request a FBA (Functional Behavioral Assessment) was done to assess Julius. You see, we have the right to request an assessment in any area of suspected need and/or disability and this woman did NOT want to approve this. ( I guess she assumes that I will be requesting a 1:1 aide for Juju based on the findings in the behavioral assessment to get him in a gen ed setting. All of this is unspoken and assumed)

She showed up in the living room to give me the “pep talk” about my son’s disability and make sure I am “ready to accept reality.” Oh I am ready. I have been ready, and for the record everyone, I DO accept my son’s disability, or handicap or whatever else they want to throw at me. I accept it so well that I am COMMITTING MY EVERY WAKING DAY to getting him every service, therapy, class, training, and PEER GROUP that he DESERVES. Her insinuation that Julius is not “ready” for a “regular” kindergarten class was stepping across the line and I dare her to try and tell me what MY reality and MY dreams are.

So, to finish catching things up, I removed Julius from McRory Integrated Therapeutic Preschool for the rest of the summer. We were not getting any collaboration from them regarding his potty training and no measurable progress had been made in regards to his personal goals and vb mapp. There were some unfortunate incidents in which we were locked out of the classroom for being late and I decided that our home based therapy team, along with the clinic based speech/ot we do can accomplish more. I am excited to get to work Monday. Who am I kidding? We have already done vision therapy, hbot, and aba is starting now and its Saturday. It is what we do. Some kids are at little league right now, and as usual, we are on the grind. However, we continue to stay blessed and give thanks. We have hope and won’t stop.