Punky Mama

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Going Places

photo(16)Taking the kids places used to be really hard. Ryan would get set off and with eyes darting about, he would take off on me, or pick at Aaron, or they would take off in different directions. They were downright dangerous. I persevered year after year and continued to take them in public.  I set expectations of behavior for the boys on outings. Sometimes they had success and other times they were not successful.  We have avoided crowds for years now, and skipped more than one outing. At times we were stared at with judgy eyes and left our excursions early.

Yesterday I took the boys to the Ivyland – New Hope railroad for a ride on the steam train.  It was a gift for Ryan’s birthday since he has been reading about trains all summer. He was beyond excited. When we arrived I opted for the upgraded tickets so we could sit on the open air car on such a beautiful day, thinking that this gave them more of a chance of falling out of the train but they hopefully, could handle it. Five minutes into the ride I noticed that only Aaron was trying to stick his head out of the train.  Not Ryan.  Ryan sat peacefully on his seat taking in the whole experience with a hint of a wry smile on is face. For an hour. When they switched the engine from the front to the rear of the train he watched with his full attention but never did he try and climb, which has always been an issue when in public. I was so glad I bought this experience for his birthday.

When we got home and I was making dinner, I told him how much fun I had taking him to the train. I also said that it was the most relaxed outing we had ever been on.  He smiled a huge smile and said he had a great time. I said, Ryan this is such a big change. What happened?  He said, I want to go on tour with Thorazine.  I want to travel and the only way to do that is to be able to go places and not struggle.  Instead of getting up I tried the deep breathing.  It helped.

I hugged him super tight until he swatted me away as only an eleven year old could.


IEP Month

The thought of an IEP meeting for Ryan used to strike fear in my heart. They would give Ryan vague goals with vague promises of accommodations. I would ask for occupational therapy and speech, then wave around the mountains of diagnosis he received from CHOP to hear the school district say, no he is not eligible for any of these services.

Fast forward two years.  The head of the school asked me, can we reschedule Ryan’s IEP meeting. We want to reevaluate him. He had been given speech and OT last year but they wanted to reevaluate and come up with new goals for both therapies. Of course he still has his behavioral consultant and his behavioral therapist. I was very happy with the plan since we have met with his teacher about his specific needs in the classroom and he is doing well.

Yesterday Ryan’s teacher came out to me with his testing. She said that Ryan tested at end of 4th grade for math and they were concerned with bringing that to his fifth grade level and that he needed help with multiplication. I almost jumped for joy and I am not sure she would of understood. Ryan arrived at his new school at under a second grade level for everything. In a year he is reading on grade level and is almost all the way caught up in math. I am going to get some multiplication flash cards to run in the evening.

Last week the behavioral consultant asked me, what has changed the most since Ryan has been in the new school and has gotten the therapies he needs. I replied, I became his parent again. I no longer need to be his teacher. He has a very competent special ed teacher. I don’t need to be his speech, OT, or behavioral therapist. I get to have the best job of all of being his parent.

Pinch me that this is all real.  Go figure he got all this help from the devil of a school, the cyber charter. Don’t mind me as I go cackle in a corner.

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Happy 11th Birthday Ryan!

Ryan on the zoo balloon with Philly behind him

Ryan on the zoo balloon with Philly behind him

Dearest Ryan,

I have been writing you letters on your birthday since you were four years old. Wish I thought to do this when you were younger but I am happy to have shared so many memories of your childhood in these letters. This year was about you blossoming.

You have grown so much this year. In early June you were on the tall side but had a little kid look to you with a roundness.  Suddenly in July you were what seems like four inches taller, broad shouldered, and had a decidedly young man look.  It feels like it happened overnight.  Your face is changing and you are wearing men’s sized clothing and shoes.  You have become a strong young man. You often volunteer to carry heavy things for me. Recently, when we went on vacation you insisted on carrying everything we brought up two flights as I unpacked. We were finished in record time, and I was astonished how much you carried.

You started this summer as a little boy.  In July your rapid growth had your brain chemistry thrown off and your photo 2(1)behavior was hard to manage and you were just hard to reach.  August brought a new found calm.  When your Dad was away working on his big project you stepped in to be my right hand man.  Often when Aaron was melting down you were the one to take the higher road in your arguments. I was so thankful for your calm head.  You had a willingness to fight when it was important but you knew when to let him be when it was minor. I enjoyed the time we had together in August and I adored our “summer bucket list”, which was a list of things we wanted to do this summer.  Last week we crossed everything off the list with the time we spent at the beach.

Your transition back to school this year has been the smoothest transition you have ever had which makes me happy for you.  You love school and your school loves you. We are working on a new IEP and new goals because you met so many of your goals last year. You still have your behavioral therapist and your behavioral consultant, OT, and speech therapies. You have learned to trust your team and the teachers and therapists at school.  You try and use the tools they are providing you since you are managing your ADHD and sensory issues without the aid of drugs, which is very hard. It’s taken a while but it is working and I see you with a very bright future.

Ryan looking swim team cool right before he won first place by a huge margin

Ryan looking swim team cool right before he won first place by a huge margin

This summer you won high point for your age group on the swim team.  I knew you were going to get the award because at every meet you shredded. I cried many tears of joy at home before the awards ceremony. You won this award swimming butterfly and breaststroke which for a kid your age are the hardest strokes, but then again of course you did. If you were going to get this award it was going to happen as you took the hardest route possible. It is how you are wired.  This success was so sweet.  At this point your winter swim team considers our family “lifers” and they hired me on to update their website.

You want to be an inventor when you grow up. You ask a million questions about how things work. Lately, since you now sit in the front seat of the car I hand you my phone and you google your own answers to your questions. I adore this because I get to learn too. This week it was the difference between C4, dynamite, and TNT.  Fascinating.

This year Thorazine entered your life in a more than a periphery thing that Mom and Dad used to do.  You regularly tell me how proud you are of your Dad and I for remembering to do what we love. You come to rehearsals and I catch you humming our songs as you ride your bicycle. You love to show the band off to the carpool kid and the pride on your face is unmistakeable. I am glad to be able to show you that Mom’s can love their kids AND rock hard all at the same time.  Both you and Aaron seem to enjoy the band and have quickly made this a normal part of your lives. The guys in the band spoil you guys and it warms my heart. They accept if we are going to be part of Thorazine, you and your brother are part of the package. Thanks for all your support, moving equipment and sitting through endless rehearsals. I appreciate it more than I can say.

The boys with Elliott

The boys with Elliott

I love you more than you could ever know. I am starting to get glimpses of the man you will look like and what kind of man you will be.  I see you becoming an empathetic, smart, questioning, warm, and engaged adult who is tall with beautiful red hair.  I can’t wait to see you blossom into an adult, and this is just the beginning. For now you be eleven and enjoy everything about being a boy.

I love you with every molecule of my being,


Rocking out while hiking!

Rocking out while hiking!

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The Genuis of Rocco Sacco

Rocco Sacco, the one and only!

Rocco Sacco, the one and only!

I have a dear old friend Rocco.  His real name is long and Irish but he has been known as Rocco Sacco for longer than I have known him.  I remember the first time I spotted him on the street.  He was riding a one speed bicycle full speed down Larchwood Street in West Philadelphia  and it was 1987.  He was wearing black Chuck Taylors, plaid Bermuda shorts, a crisp white shirt, and sported a full on pompadour.  I thought to myself WHO was that creature. That was Rocco Sacco, lead singer of the Fabulous Fonda’s and the Ambush Bugs (watch after the 5:28 mark).  Eventually, he worked in the same hip corner store as my boyfriend and we got to know each other. I remember him coming to a warehouse punk rock shows dressed to the nines with his drummer girlfriend who sported a sharp black bob haircut. It was all so 1980’s and they were so impressive.

The crazy boyfriend moved on and I worked with Rocco. I was in a really bad place. Completely depressed.  So depressed I tried to take my life and I was sick and in the hospital.  He tried to visit me in the hospital but could not make himself go into the hospital. Instead, he slept nightly on my couch for months. He lived elsewhere but he made sure I was never alone. I grew to love Rocco more and more. He was part of my evolution. He was there when I joined Thorazine and as we found success he loved to boast how much he cared for me. I cared in the same way. He needed a place to stay while we were on tour and I gave him my room, although it was a mess by the time I got home and I was annoyed.  It didn’t matter. We are tied together, a found family of sorts.

Rocco is now taking care of his elderly mother on the Jersey Shore where we are on vacation. I invited him to meet up.  I know Rocco is not a beach kinda guy, but he found me and I dragged him onto the beach. He was so Rocco.  Dressed as always, with a beret.  Elliott was happy to see my friend, the quintessential character, knowing how much he means to me. He visited with the kids who keep asking when he could come back to be with us. He listened to Ryan and his obsessions and talked to the kids as people in his special Rocco way. Today as we showered after the beach Ryan declared that he could not wait to see Rocco again.  I said I felt the same way. It was that great a visit. He listened to the boys and loved them because they were a part of me and he helped me to celebrate the amazing life I have after so much pain.

I hope I see him again sooner than later. I love my found brother who chose to help me save my life.


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