Punky Mama


Happy 13th Birthday Ryan!

Dearest Ryan,



The Boys on Aaron’s Birthday


Although I see and interact with you daily, I am overwhelmed to realize you are thirteen years old. It feels like it crept up on me and tapped me on the shoulder suddenly. You are growing to be such a tall, handsome boy, and I see hints of the man you are going to be.  You measured yourself next to me daily for months till one day you were indeed taller, and it brought you such delight.


This year has brought such huge changes for you.  You love the school you attend. It is a mixed cyber charter, so you go to school three days a week, and you are home two.  It suits you.  You have never been able to be around large groups of people for the whole week.  This allows you to be part of a classroom yet 13876386_10153643579416750_4090023232612616235_nget the breaks from people that you need to thrive. You are becoming incredibly successful in the classroom for the first time. Your lowest grade is a B+; your teacher says you have become her best student, and often you mentor for the other kids around you. Your BSC and I think it is a combination of finally finding a medication you can take, maturity, swimming,  and the incredible support your school provides. I think back to 7th grade and how much I hated school.  Not you! You bound off for the bus or to the dining room table happy to go to school.  I am glad we found a school that works for you.

You are still part of the swim team; it is your 7th year! Actually, you decided to go to a higher level of training and



you joined the USA team. You were very nervous about the harder training but you are adjusting easily although you needed an Ibuprofen a few times the first week for muscle soreness. You are very strong and you try to muscle your way through races. Don’t forget big strong boy that you need technique.  Your had a great summer and still are excited by the fact you were 6th in the league for breaststroke and won high point for the team for your age group. Swimming is a huge commitment and these days you go to almost every practice with a smile except for Friday although, after it is over you are happy you went. You still get overwhelmed by the crowds and noise at swim meets you but you have some coping mechanisms and you continue to participate at a high level anyway. It


Three Month Old

astounds me how hard it is for you to have you sit at a crowded meet but you choose to do it anyway. You have incredible tenacity.


You love to get on Aaron’s last nerve. You torture that poor kid although you guys are still thick and thieves. I am going to repeat my Father’s words, “be good to your brother, he could be your best friend”. I know he is a little sensitive.  Be kind.  Don’t laugh at his displeasure.

You still come to Thorazine practice and shows. You really have little to no interest in music beyond listening.  That is ok with us. You have to be your own person and not follow in your parents footsteps. I do my best to support your passions and you do the same for us.



Fourth of July outside Thorazine show

You have been more at peace this year than you ever have been before. It’s refreshing and makes my job as your Mom easier. I find we laugh more, have been able to do more as a family, and you are happier than you ever have been.  I remember telling you in your darkest times that I could not fight for you if you won’t fight for yourself.  You are fighting so hard and your success so sweet.  Here’s to your teenage years!  I hope  you stay as active and engaged as you are right now. You have all the tools to be successful, you just have to use them.


Watching you grow and being your Mom is a privilege.  Just know how much I love you every single day.

Have a great year,

Love your Mom..



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Happy 11th Birthday Aaron!

Happy 11th Birthday Aaron!!





July 4th at the outdoor Thorazine show


What a great year you had.  Fourth grade was a bit tumultuous with your school closing and you heading back to public school.  You didn’t last long at the public school, only eight short weeks.  I was proud you advocated for yourself and together we worked out a schooling situation that made you happier.  It was not optimal but you thrived through it all.  Your choice to homeschool this year was all from you.  You knew what cyber school entailed and even though you missed being part of a classroom daily, you chose to make the best of it since the public school was not supporting your needs. School was challenging.  Your cyber school had a gifted program and they gave you enhanced work.  For the first time, you had a few B’s on your report card and occasionally


Building at the Franklin Institue!

had to get extra help from the teachers. You also got to experience an unschooling school one day a week.  You loved it and if you had not gotten into the school of your choice this year you would have attended the unschooling school twice a week next year. You were accepted to The Science Leadership Academy Middle School and you are tickled that the acronym for the school is SLAMS.    We went to the welcome night and you met your teachers. In typical fashion, you met most of the kids in the first five minutes and you had stories to tell me about all the kids on the ride home. I am excited you are going off to school again but I will miss you, the best office partner I ever had.




Goofing with Dad in the kitchen after swim team eating Pecan’s bought on tour

You are officially no longer allergic to egg.  It’s not like you would actually eat an egg.  At the challenge, we had to drown the egg in three times more ketchup than egg.  Actually, you are pretty darn picky but I slip egg into your diet via baked goods and other food.  I am hoping you can expand your diet eventually because I am sure you have to be bored of the fourteen foods you eat. You are growing and healthy.  I look forward to your allergy testing this year.  Could another food become safe?


You love your brother but your patience wears thin with him.  He tends to be all over you at the pool this summer.  Your Dad and I decided that each of you would go to day camp for a week.  You are going different weeks so I can spend some time with each of you doing things you want to do.  You are so excited. You want to take your swim team friend Jack to The Franklin Institute, you want to go to the pool without Ryan, and stay up late with Dad every night.  I think having Ryan as your brother will go a long way to teach you about acceptance and patience but I fully respect that we all at times need a break from his intensity.

You are STILL swimming making this your 6th summer! You had a great coach this spring


You asked for breakfast in bed on your birthday

and are swimming well this summer.  You made the top 30 in the league in two strokes and you are less than a second away from an A champ time in the backstroke.  Don’t compare yourself to Ryan.  He is big and getting very muscular and this is his season.  You will get faster; I promise but you have some technically beautiful strokes. You will grow.  Hang in there.


I would still use the word “capable” to describe you.  We were recently at your aunts going away party as she is moving to Arizona.  You were amazing.  You shook hands with every person in the room, looked them in the eye and talked to them.  You answered their questions about school made appropriate small talk, and you asked them questions.  I swear you sounded 35 years old with your wisdom. After you met everyone you joined Ryan outside as he could not manage the crowd of people.  I could not have been prouder of you in that moment.



Aaron the punk band tour road warrior


You went on your first punk rock tour this spring. You liked it more than you thought you would. I think my proudest moments are when you stand up front to watch the show even though you know every song by heart.  You are still very interested in the business end of the band and the merch would not be as organized as it is without you.  I also enjoy when you get new songs stuck in your head and sing them as you do other things. I am happy to share the band with you and this is a special time in our family. You and your brother think you are part of the band and in a way you are because we could not do this without your help and cooperation.


On your birthday we made a list of 11 things you wanted to do today ranging from going to


school on the deck….. best day ever

the arcade, breakfast in bed, no chores, and dinner at Roxborough Seafood House. You already crossed off two things!


Aaron I hope 11 is just as magical for you as 10 was.  I hope you never stop loving furry animals, science experiments, and Minecraft.  You are a sweet loving kid and I could not be prouder to say you are mine!

Love you with all my heart,



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The Golden Ticket

The Golden Ticket.  Straterra.  13344494_10153497754316750_621354085933424980_n

Since last summer, a pubescent Ryan has been more than difficult to be with.  He has been more impulsive, angry, argumentative, just miserable.  He never wanted to do anything but lay on my couch and go to swim team.  He is usually successful out of the house but he and Aaron fought constantly.  I mean CONSTANTLY.  I would send Ryan to school Monday morning and Aaron and I would sit at the dining room table as I started to work and he school.  We would sigh and look at each other not having to speak, knowing Ryan being out of the house brought us some peace. Luckily, Aaron and Ryan homeschooled together only one day a week.

Over the last months, I could not let Ryan play outside and Aaron would hide in the house if Ryan was outside. Ryan has been destructive in the house.  Pulling apart blinds and screens.  Just destroying the house in weird and maddening ways. Using up full bottles of shampoo to watch the bubbles go down the drain.  Just impulsive insanity. He was behaviorally successful in school, his grades were ok, and he has been VERY successful at swim team  It ended there. Friends moved on, sick of his behaviors. I kept him in therapy and in the pool as much as possible. He was rude to all of us, miserable, it seemed painful for him to be in his own skin.  I chalked it up to puberty and his incredible growth and having the size and weight of an adult at 12 but I consulted the Developmental Pediatricians at CHOP because my house was a hard place for all of us to be.

Ryan trialed Focalin at the allergists office because of his history with stimuant medications.  Ryan is allergic to the stimulant drugs. He turned as red as his hair and broke out in hives. His throat started closing. All of this with ONE non-therapeutic dose. I left the bottle at the allergist office.  It took three doses of antihistamines to get the reaction to stop and we were in the hospital ALL day. It was hard.  I wanted to help this kid.

We had one drug left to try.  Straterra.  I did not have high hopes.  Not at all, but I had to know. The next move was murky and we discussed the idea of off-label uses of other drugs. Ryan took a very small dose of Straterra.  After an hour he was fine.  We went out to lunch and celebrated. Fingers were crossed that the side effects were tolerable because Tenex another non-stimulant medicine left Ryan with full on OCD and he would not leave the house. The ramp up is going to be very slow and I was not supposed to see any results for weeks. That night Ryan was a little less wild on the car ride to swimming and he picked on Aaron a little less.  The next day he was playing outside successfully and Aaron did not scream once about what Ryan was doing to him. By day three he scored so high on his math final his teacher texted me and allowed Ryan to have a short Google hangout with me from the classroom. He told me he loved me in front of his friends!

He came home and for the first time in a very long time, I could not wait to pick him at school.  He and Aaron were so much fun on the way home. They together went to walk the neighbors dog and it went GREAT, something he has not done in over a year.  Then I pushed it and allowed the kids to go to the schoolyard a few blocks over to skateboard.  Ryan wore his helmet without me asking!! He was then successful with his brother and a friend for over an hour and when I called them on the phone to come home, they came into the house excited and giggling. The rest of the night has been just as lovely.  Elliott came home from work and was overjoyed about the peace in our home.

I am glad we waited on this drug.  The dose for a kid Ryan’s size should be 80 – 100 mg.  He is on 10 mg and he will be moving to 18 mg next week.  If he is doing as well on 18 mg I am going to call his doctor and stay there for a while.  He is peacful and focused on a very small dose with more executive function than he has ever had.  He is still feeling a bit hyper and he expresses a need to stim by moving his hands. If he is having this success at a 10 mg dose and 160 lbs he would have been overdrugged as a younger child with less weight.

Me, I have been sobbing on and off all day. I am glad I have fought so hard for so long, and yes, I know it is not over, but this is a win.  A sweet big fat win and I want to celebrate.  I hope everything continues on exactly the way it is now.  Suddenly, I can’t wait for the summer. Adventures await the boys and I.  For a the first time, in a long time, I have hope that things will be and can be glorious. Summer awaits.


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Time Flies

It’s been a good year so far.

The Ed Plus location the boys attended shut down over the summer and then in November the location that Ryan was still attending closed for good. Ryan has adjusted nicely to his new school.  He has many teachers from his old school around and over half his class from Ed Plus are now in his class. We are happy with the IEP he has and he is thriving.  I think my biggest complaint is that the school, in general, has very little communication with the parents.  I find it maddening but his Special Ed Teacher is very  responsive and I can get what ever info I need from her.  Many of the parents have complained about the lack of communication and since the school is new they are working this all out.

Aaron is doing great with PA Leadership Cyber Charter School.  He is very independent with getting his schoolwork done and if he has an issue with something I can’t help with like common core math, he has ample opportunity to get help with a teacher during the day or at homework help in the evening. He has been taking music and an inventions class.  He even worked with a group of students on a project that they submitted to a contest the Smithsonian was holding.  He has made honor roll both quarters.  He attends an unschooling school one day a week with many neighbors who also homeschool.  It is a nice balance.  He showers less than he should and wears PJ’s more than other kids but he is thriving . Next year he is off to school at the Science Leadership Academy Middle School.  He is excited about it but if he does not like it cyber school is an option. PALCS have worked hard to bring him a challenge and he is almost two years ahead in school.  I have to say, it’s nice to have someone around in the day. He is helpful and is GREAT at reminding me of things not to forget.

I have been working more and more from home. I have an old knee injury which has deteriorated over the last year. I have had cortisone shots and had synovial fluid replacement therapy. It’s a bit better but standing on my feet 16 hours a week is hard and eventually I will need a knee replacement.  I have two steady freelance clients and I have a third who I am working with on a trial basis.  If I land the third client I am considering going to one night a week at the bar. I love my main freelance client. The work is interesting and the team is great. I have been taking many Friday’s off. I really love not being zombie Mom on the weekends.  Just one night might be a little more my speed these days.

I have been taking the kids to swim team on Friday nights.  Team ends earlier on Friday so I buy us tickets to swim at the pool at the community center. As soon as swim team is over we slide and play till the pool closes.  They are getting so big and soon enough they are not going to want to play with me at the pool on a Friday night.  I enjoy our new Friday routine and i think they do too.  It makes me long for summer days at the pool.

Thorazine are ready to go on tour again starting on May 11!  We are doing just four dates down south.  It is a tour in where we are going to visit people who booked us in the past.  We are all excited about it. This time BOTH kids are coming. Aaron is starting to get excited.  He likes to talk to Suri on my phone and ask her how long between the cities on the tour.  He and I have to go through the merch this week.  Aaron’s school releases the next week on Friday so he is going to do school over the weekend and by the time we leave for tour he will be done for the week.  Ryan is going to do school on the way to the first show but he is going to take off two school days.

Ryan won most improved for his age group in winter swimming meaning he dropped the most time out of all the boys he swims with his age.  Both he and Aaron have been swimming all spring five nights a week.  They still love it.  Aaron swims in a different group that Ryan which is good! Actually Ryan made the gold practice group and he is considering joining the USA team next season.  It’s a decision I never thought Ryan would have to make. I often work from the pool in the evening which means I am getting paid for them to swim!

That’s all for now.  I will post from the road!!






Ryan Has An Educational Dream

Ryan recently declared he wanted to start a university. We talk about it in the car and he has been working on a plan to start a university to include kids with special needs. His university would strive to give every kid a college experience no matter how they learn or work.  He goes on to talk about kids who might need to live alone because of sensory needs. He talks of kids who need more quiet time to study and a person to help them stay organized. Even better he speaks kids who have communication issues or can’t live on their own with out help, but he still wants to provide them a university experience even if their experience is focused on life skills and physical therapy. His university would provide everyone what they wanted and needed as an adult to thrive. It would make those not included in typical universities feel included yet let people who wanted to work toward a PhD all learn together. He especially loves the idea of academics and the trades sharing a campus.  I love his Utopian vision and forethought. At twelve I can’t imagine having had ideas like his.

This week Aaron was accepted to a magnet school in Philadelphia for next year. We all have been very proud and excited for him.  It’s a school that is partnered with a science museum, the school district, and a university. His first year of school will be on the campus of the university. It’s the inaugural year of the middle school and they already have two very successful high schools. The curriculum is inquiry-driven and project-based. I am sure he was chosen for his impeccable transcripts and positive behavior in school.

So what about the Ryan’s of the world?  Where is their inquiry-driven and project-based school partnered with a science museum and a university?  Yeah, the Ryan’s might not always perform the best on tests and may have behavioral issues from time to time but don’t they deserve a world class education too that doesn’t cost $25,000 a year?  I am sure the ideas above prove he is worthy of the time and effort in this world but because of how his brain works the best schools like this are out of reach for him and I find it infuriating. Why is Aaron more worthy in the eyes of the educational community because he does not have Autism and more?  Why can’t there be a school that includes people who want to try but can’t perform typically. Ryan goes to a good school.  They honor his IEP but I would not call it extraordinary. I am finding it hard to connect to the school and the families there. Heck, I am finding it hard to find out when PTA meetings are.  I hate feeling so disengaged from the school, but luckily Ryan’s special ed teacher is an old acquaintance who has been helpful.  I am not the parent to drop him off to a vacuum and communicating with his many teachers has been hard. It is very typical school.  He is online or at school online with teachers all day.  No movement included. It’s adequate.  It’s not extraordinary.

Again.  Where are the extraordinary educational opportunities for a kid like Ryan in Philly? If you know, please let me in on it.