Great start to the week!!

" I love school." Says Robbie as we are on the swing set at 7:30am this morning. He has already had a bath, eaten breakfast and brushed his teeth. There has not been any whining,crying or aggressive outbursts. It was a great start to the week and lets face it, Monday's pretty much suck.
The weekend was busy with Halloween related activities and I really didn't think we'd get through it, but we did. The annual Halloween party at a friends went as well as could be expected. Rob took Robbie about 30 minutes before the party started, a coping ritual done every year. This allows Robbie to settle in before chaos begins. I arrive with Lexi and Timmy a few minutes  after the official start time to find Robbie quietly playing with some toys in the family room. Robbie spent most of the time stimming outside, where we were, and eating sugary cookies. He did not want to go on the gigantic slide that was rented from bounce U. I was a bit surprised at first because Robbie loves Pump it up/ bounce U but then remembered he has not gotten in any other bounce houses or slides outside of the facility itself in a few years. This makes sense to me as Robbie tends to compartmentalize many things. For example I have never heard my son read yet he reads in school. That is the explanation. Reading is done in school, not at home. In the same token, sliding on a large inflatable slide is done at bounce u or pump it up, not at a house party.
Robbie did not want to wear a costume, which has been pretty typical for him at Halloween. He'll pick one out and wear it before or after Halloween but most years not during the actual day or anything associated with it. I took Robbie home about 40 minutes before the end of the party as everyone makes there way to the parade in Medford. We have never even attempted the parade. Apparently it is amazing, but all we think about is the crowd and the noise and of course how that would affect Robbie. So we skip it.
Sunday we attended a safe trick or treat at my husbands school. We have gone for the last 3 years as Rob has worked a station with his basketball team to hand out candy. Robbie wavered between wanting to wear his costume and wanting to stay in his pajamas. He also yelled " I don't want candy" as I explained he would be able to get lots of candy. This is a statement I ignored. Robbie LOVES candy. He decided he did want to come. He did want to wear his costume. He did in fact want candy. I wrestled all 3 into the car as Timmy began to state he did not want candy.  Again, a statement I ignored as he too, loves candy. We pulled into the parking lot and Robbie started screaming that he did not want to go in. Again, this wavering back and forth happens often. Lexi and I both explained that we'd go in, see Daddy and come home. That finally seemed to work and I held him close to my side as we walked toward the door. We had to stop twice to breathe and give a deep hug. The next 2 hours were spent collecting candy, handing out candy and for Robbie, eating candy. Robbie ate an unbelievable amount of candy. That evening thing seemed very "normal" for our family. We ate dinner. The kids worked on a craft project. They watched a movie. Robbie ran back and forth a million times saying "eeeeeeeee." Robbie jumped up and down, flapped his hands and was loudly stimming. While I can't say the loud stimming noise was not a bit distracting, annoying even. I can say the lack of anger and aggression was awesome. Fingers crossed for a good week for all!!!!

Autism takes

This statement may sound a bit harsh, but Autism takes. In the beginning Autism takes away hopes and dreams. As time goes on and your child grows up and matures a bit, some hope returns. Shortly after, it is taken away again. Rinse, repeat, rinse, repeat , if you catch my drift. Just about the time I feel like I really have a handle on things, something comes crashing down. Just as Emily Perl Kingsley says, you're not going to Italy, which you had prepared for, you are going to Holland. Or even more perfectly stated by Rachel, a fellow special needs mom, in her blog " The Kevin Chronicles"  you're suddenly in the club that No One Wants To be a Member of Including the Members of This club, club.
Lately for me, it has been aggression. Robbie is so angry. Anything can set him off. It is affecting the whole family.  We've also experienced some regression. For example medicine- we had gotten to the point where Robbie would take cough medicine for a cough. Robbie would take headache medicine for a headache. Robbie would take his nightly medication with out argument. Now, it is all a battle that we are not winning.  Almost any outing or activity that was once enjoyable is now stressful. I picked Robbie up early from school so we could go to his book fair and buy books for himself and his siblings. Something we have done the past two years. Robbie was happy to see me yet as we entered the library he became agitated. He picked up a book and when I suggested we keep looking but hold on to it he began screaming at the top of his lungs. The next stop was to pick up brother at daycare. Again something we've done many times. As we pulled in the parking lot he again became agitated. I had a sinking feeling as it was still nap time inside for the little ones. I explained that we needed to pick up Timmy and he could either wait in the car which I've never offered but feared the screaming episode of the library or come quietly with me. He chose to come with me but started to become loud as soon as we touched the door. His volume increased as we entered the building.  Again, this is the time of day where most of the children are still napping and I creep in to pick Timmy up to ensure we get Lexi on time. The feeling of control is gone and that feeling of embarrassment is back. To be clear, the embarrassment is not from Robbie's autism but from your inability to have any control over your child, who once was somewhat under control. You knew when and why the meltdowns were to occur.  He is not a toddler. This is not a new diagnosis. After years of struggle and daily tears, this should get easier, or at least not harder.
And then come the questions. Is Robbie in a new school? No. Does Robbie have a new teacher? No Is Robbie in a new classroom? No. His child study team think it could be due to hormones and behaviors. Did you know those on the spectrum tend to go through puberty earlier than their neuro- typical peers? Neither did I, but apparently so, says his teachers.  So again, what do we do.
1) Tomorrow a new Behaviorist is coming to develop a program.
2) New medications begin as soon as we can get blood work done.
3) I know this is a bump in the road or the journey of autism and we will move forward, but it sucks.

Art class

I ran into Robbie's art teacher this weekend. Robbie had missed art last week due to his bus being very late which has him out of sorts. I apologized for his missing the class and not reaching out to her sooner. Next she began by saying she had wanted to talk to me. Immediately my heart sunk as I assumed it meant Robbie was being disruptive during class however that is not what she said. She asked if it was ok for her to discuss Robbie's autism diagnosis with other parents in the class. She explained that Robbie was fine in class, a bit of scripting dialogue and asking for hugs from her but no disruptions. I exhaled. Robbie could continue art class as he has been doing for the past 6 sessions.     Robbie really enjoys art. It's the only activity outside of school that has stuck.  I offered to draft a letter she could use to help explain Robbie/ autism and send out if she wished. After discussing this scenario with my husband, here is the letter we came up with. And yes, I cried through most of it. Feel free to offer feedback.

Dear Other Parents in Robbie’s Art class,
I wanted to introduce Robbie to you and your child as he does not have the ability to do so himself. Robbie was diagnosed with Autism Spectrum Disorder at the age of three.  People with autism have difficulty in areas of social interaction, communication and repetitive interests or behaviors.  While those with autism have many similarities, each is also unique in many ways.  Robbie likes hugs and touch.  Robbie is verbal but may be hard to understand as much of his speech is linked to movie references or TV shows.  Robbie also has a high level of anxiety due to his inability to communicate as others do.  I write this letter to you and your child in hopes of providing some understanding as to why he may hug his teacher repeatedly or flap his arms in the air. He loves art class and it has been a blessing to find a friendly environment where he can be Robbie and enjoy the class.
I’ve drafted this letter just in case your child has discussed a student in the class that was either a bit weird or who did not follow all the rules the teacher has put in place- (hugs, interruptions, etc.)
If you have any questions, please free to reach out to myself or my Husband. We’ve been living in Medford lakes for 11 years and have 2 other neuro-typical children- 7 year old Lexi and 2 year old Timmy, as well.
Thanks!
Simonne Hummel
simonneprescott@hotmail.com