Sunday, May 13, 2018

A Good Company, A Great Company and a Really Crappy One...

I’d like to begin with an analogy…

Let’s imagine for a second that you are having problem at work and you work for a good company. Your supervisor has identified your area or areas of weakness and it has become a big enough problem that it is now time to meet to discuss the next steps. I think we can all generally agree that a responsible employer will make a plan at that meeting. This plan will include steps to improve your performance and boost your confidence as an employee. The employer is invested in helping you become better at your position so that their product, business and output thrives.

Now let’s imagine for a second that you are having a problem at work and you work for a really great company. Not only do they set up a meeting to help you improve using the resources that they have within the company, they might even send you outside of the office for further training and professional development that will strengthen you as a worker. You might even work for a company who gives you a mentor, who is with you from the first day. A mentor whose job is to help you be successful from the beginning, so that you never have to struggle and never have to feel failure. The mentor’s job is to see potential problems and give you the tools and support to help you avoid having these issues at all. These companies understand that a happy, supported, confident employee helps their business the most.

Finally, let’ imagine for a second that you are having a problem at work and you work for a crappy company. Your boss refuses to help you and you fail. Scared that you will be fired, you beg, in a pool of tears, for help. Then and only then, they might set an hour or two aside to help catch you up on what they “believe” you are missing. In this situation, you only receive help if you take it upon yourself to track it down on your own. Through reading, reaching out to colleagues, who you perceive to be more knowledgeable, and scouring the internet, you build your own path to success. For those employees who do not have the resources, ability, determination and understanding that help is available, being fired is in the foreseeable future.

Now let’s extend this analogy to special education. Any parent of children with special needs can almost instantly agree that the special education system is the crappy employer. When the whole ideology to help children with physical and development difficulties is based on the “let them fail before we step in” mentally, there is a problem. When a child can have two moderate delays and a mild delay at the age of 5 and not be eligible for services because they are not in the right categories, that is a problem. When a school district isn’t willing to offer a child with multiple areas of delay including one severe, because the state penalizes districts that have too many children with special needs, that is an enormous problem. When I, as a parent, am being told by the special education committee that even though my child is still delayed, and behind her peers in multiple areas, she is improving and on the path to having age appropriate skills (not there yet!), and will no longer qualify for services, we have a problem.  When her therapists, upon hearing that she is being “discharged” start sending me sheets of exercises to do start doing with her at home after she no longer gets to see them and are discussing which are the most important to do because the packet is the size of a small novel, we have a HUGE problem.

A friend of mine who has several children with special needs said to me, “I’ve never met a parent of a child with special needs who is truly happy with the service they are getting.” Here’s the thing, if those “happy with their services” parents existed, every parent of special needs children would move and put their children in that school. That is the sad truth. If we were doing what we needed for our special needs children, there wouldn’t be whole agencies dedicated to advocacy, law offices that specialize in special education litigation or enough Facebook support groups to fill your days with reading.

We are failing our children.

For the most part it is not the teachers, the therapists or even the CSE chairs who are at fault. We have been blessed with therapists who have gone above and beyond for our child. They have attended trainings, scoured the internet for resources, given up vacation time and spent loads of their own money on therapy tools. As a teacher and as a parent I have sat through agonizing IEP meetings where the adults sitting around the table are trying to do what is right but are confined by laws that leave their “hands tied.” Who is tying their hands? How can we release them so they can do the right thing? So they can do what our children so desperately need them to do?

Well, like all things, it comes down to politics. When the Common Core was written, it was drafted by people who had spent more time outside of the classroom than in it. It was wrong and people boycotted. Seemingly out of nowhere, it appeared on politician’s flyers that landed in our mailboxes and became a topic of conversation on the radio and around the dinner table. As a teacher I was questioned about my views on the topic at parties, in doctor’s offices and at the grocery store. Now the next generation of the Common Core exists and the tests are being written using the advice and insight of teachers who actually stand in front of a group of students every day. They are not perfect but parents have managed to not let the issue fade from view and change is happening.

We need to do the same for special education. We, as parents of disabled and non-disabled children, need to rise up. We need to say it is inhumane to let our kids fail before we provide support. What life lesson are we teaching them? We need to make it known that penalizing districts for giving students IEP’s because they need help is wrong. We need to implore institutions of higher education to hire professors who may not have a PhD but have decades of teaching experience to teach their students. We need to push universities to include more in depth and extensive training in the field of special education for their teacher candidates. We need to vote people onto the local Boards of Education who will support more professional development in the area of disabilities for all adults who will work with children in the district. And we need to provide parents, caregivers, extended families of people with disabilities with easily accessible trainings, respite opportunities and support.

Most of all, we need to update and protect the laws applying to special education. Special education is a relatively new concept. The IDEA (Individuals with Disabilities Act)  was crafted in its original form in 1975. Not long before that children with disabilities were not even allowed to attend schools. The IDEA was a enormous leap for special education but that does not mean we should accept that it is the best we can get. We need to push local, state and federal representative to care about our children with disabilities like we do. We need to make it a campaigning point and make them want to fight for new evaluation measurements, disability qualifications and more. Disabilities span every race, creed and income. We need to do better for our children. Our education system needs to function like the great company. Our children are the employees and as their managers, we need to support them from the beginning, mentoring them so that they don’t have to fail and can be confident to go on and live productive, happy lives. If a parent of a non-disabled child was forced to deal with the system of hoops that a parent of a disabled child deals with on a daily basis, it would make the evening news. It would be newsworthy.

So on the eve of my daughter’s final IEP meeting and the beginning of my new role as service provider to her multiple moderate delays, I implore you to write your senators. To beg them to push for changes to special education law so that all children receive a fair and appropriate education regardless how great their delays are. A delay is a delay and the more time we spend in the early years helping them catch up, the farther they will fly when they are grown.

Thursday, April 26, 2018

Poem in My Pocket Day

The Woman in the Mirror

Some days I look in the mirror and I can’t recognize the woman I’ve become.
The sleepless nights and hours of worry lay wreck upon my skin.
I stand in front of my open closet, struggling with what to wear.
Everything I own is from my old life, my old me,
It belongs to the girl I no longer see in my reflection.

Other days I get up and I can see my core.
The light inside shines brighter and stronger because of the path I trod.
On those days I don my decade old clothes and walk with pride.
The new me loves and laughs and cries from the depths of my being.
I embrace life in deeper ways than the old me could have ever imagined.

Today I stand in front of the closet mirror and take a deep breath.
I speak out loud before I realize I am going to, “I am still me in all the right ways.” I say.
Like the clothes I wear, I am not current or new or shiny.
But I am made from quality items, dependable and built to last.

I am just who I am supposed to be.

Wednesday, April 4, 2018

Happy 5th Birthday

Two years ago a little girl stood in front of a milk based cake covered with milk chocolate M+M's. You had carefully chosen every aspect of that Mickey Mouse cake and were vibrating with excitement at the thought of eating it. We fed you a taco bar with cheese and spent our time taking pictures at angles that didn't show the bald spots in your hair. You didn't make eye contact with your guests and shied away from hugging your family, who just wanted to show their love in the best way that they knew how. Although I cannot seem to find the picture, the one of your peering over your cake, waiting for it to be cut, remains permanently etched in my mind for many reasons.

This picture sums up our experience. You are standing in front of something that was tearing your insides apart, which we fed you because we didn't know any better.  But, because you went through that day, we were able to begin figuring out what was going on. We were able to begin the journey we needed to be on. We were able to ditch that lousy GI doctor, go with Dr. Colton's advice and watch you begin to thrive. Seven doctors, two IEP's and countless hours of therapies later, you are now turning 5. This weekend's party will be much different from that day. It will be milk free and completely "Sophie friendly." You will be able to handle hugs and talking to the countless relatives who love listening to your stories. If we are lucky, you might even perform an Irish dance for us! 

This has been a big year for you. You have come so far and I couldn't be prouder. You have faced every challenge and succeeded and we love you for who you are and who you are becoming. You will always face challenges that a neuro-typical child will not have to master but with the tools you have learned this year and continue to learn, I know you will thrive. I hope you don't mind that I share our journey with the world. Somewhere there is a little girl or boy is facing the same challenges and I hope that our words can help give their life peace and hope. Happy Birthday my love. I can't wait to see what you do next. 

Wednesday, February 14, 2018

I am a teacher. I am a parent. I am a human being.

I am a teacher.

I have fought with my school district over and over because there is no safe place to hide children in my classroom. They gave me a piece of black construction paper to cover my window.

I have sat through an unannounced lock down drill.

I have sat in a dark classroom with a child sobbing silently in my lap, quietly repeating "I shouldn't have worn sparkles today. I'll never wear sparkles again." because she is not sure if this is real or not.

I have looked around my quiet classroom 20 minutes into the drill and prayed that the kids could continue to stay that way. Keep quiet, keep us safe.

I have had to finish the drill and get up and go back to teaching- like this is normal. The kids who goofed around are disciplined, the ones who are scared are counseled.

I have come to terms with the fact that I work in a dangerous business, on the first floor, in a classroom that faces an open field. Going to work is a risk.

I am a parent.

I am a parent in a different district than I teach in.

I pray every day that my babies will be safe. That they will have another beautiful day.

A part of me breathes a sigh of relief, every time I pick them up at the end of the day. Our guardian angels have kept us safe.

What a world we are bringing our kids into.

I am a human being.

People are hurting. People are sharing it on Facebook and people aren't responding.

People need to start taking things seriously.

People are in need of help and our systems to help them (people like you and me, agencies, our government) have failed them.

Until these systems are fixed, this will continue to happen.

Love and kindness and hope must prevail. We need to bring humanity back to our country.

Sunday, February 11, 2018

Pink Cup or Blue Cup and Why We Shouldn’t Always Take Parenting Articles to Heart

Pink Cup or Blue Cup and Why We Shouldn’t Always Take Parenting Articles to Heart
            When I was newly pregnant with my first child, I read this article about the five reasons modern day parenting was in crisis. I devoured the piece, soaking in every word, swearing to myself that I would not commit these wrongs. The point that resonated most with me was what she called “the Sippy Cup test.” She surmised that if a parent filled a blue cup of milk, handed it to the toddler, and then quickly switched the cup after that child threw a fit over the color of said cup, it proved that the parent feared his/her child and was letting them rule the house. I swore, that scenario would never occur in my house. I would control the color of the cup my child drank out of at every meal.

            Then, I had my daughter. Getting her to eat or drink ANYTHING was far more important than the color cup it was in. She had bigger issues to work through. If drinking out of only one certain pink cup calmed her to the point where she would drink her milk (which contained crucial medicines), then we would make sure to only offer her that cup. I struggled with this. Was I the horrible parent the author talked about, the one who was causing a modern day parenting crisis? Was I ruining my child? Believe me when I say, I dedicated a lot of time and unnecessary worry on this issue. What I should have been doing is looking beyond the cup and asking the questions, why did my daughter need this cup? What did this tell me about her? Is the cup even the real issue?

            Had I taken the time to look beyond the color of the cup being the issue, I would have discovered that the milk was the problem. My daughter was lactose intolerant and drinking milk was extremely painful for her. She took the cup because pink and purple were her favorite colors but she fought drinking the liquid every day because her little body was screaming at her “don’t do it, it’s bad for you!” She fought eating, not because she was trying to be picky, but because her body was so uncomfortable there was no room for food. In an attempt to make her gain weight, we were actually hurting her more. The cup was the only thing she could control. It was her attempt to let us know that something was horribly wrong.

            I am writing this article so that other parents, who have read similar articles, trust their instinct instead of their eyes. While, I am not discounting that the author had a point in her piece, there needed to be an asterisk at the end of the article that said “this does not apply to all scenarios”. It took us a long time to get to the bottom of our food/lack of weight gain/extreme emotional responses to everything problem but after years of questioning doctors and pursuing every avenue, we landed with a diagnosis of sensory processing disorder. It all began to make sense. We had to keep her environment constant so that she could orient herself in this scary world. Eventually, the color of the cup, the size of the spoon, the shape of the plate, began to matter less and what was in it mattered more.

            Today, the dishwasher was dirty when we got up and my son’s normal cup was not clean. My husband gave my son one of my daughter’s cups to drink out of and I thought “Oh God, this is going to be ugly,” and it was at first. But, before my daughter could reach a full blown meltdown, Brian explained why he had to use her cup and she understood. The drama ended there. My husband and I breathed a sigh of relief and we moved on with our day. It was just a small example of how far we have come. It was also a great reminder to us both that if you do have to bend on a cup for a little while, it doesn’t mean you always will have to, or that you are a horrible parent. Sometimes, there are just bigger fish to fry. Oh and in case you are wondering if my son threw a fit over getting a different cup, the answer is no. He will drink from any cup you give him because he just got up, and that kid is thirsty.

Sunday, December 31, 2017

Watering the Flowers and Other New Year's Eve Musings...

I think New Year’s Resolutions get a bad rap. It is not the resolution that is the problem, it is the process. For example, if you make a goal of losing weight during the following year, you are setting yourself up for definite failure. You will never lose weight if you don’t have an idea what caused you to put it on in the first place. You will never achieve your New Year’s Eve goals if you don’t dig deeper than surface level.

Last year I decided to try something new. I had just started back writing and the mild success I had achieved inspired me. I picked a theme for my resolutions. I set out to remind myself who I was. Almost five years of being pregnant, having babies, raising babies and going back to work had resulted in a loss of self. I couldn’t remember who I was and what really mattered to me.

So, I took this theme of reconnecting with my inner self, and set out to recommit to writing and getting published, establishing a daily yoga practice and actually hanging out with my husband and close friends. Guess what happened? I found I had been there deep within my body the whole time! I grew really strong, rediscovered my love of my profession, repaired broken friendships and let others go. I wrote a book and became a blogger once more. I listened to a lot of great music and had a lot of hard, deep talks with myself and others. It was an amazing and challenging year.

So I have decided, since it worked so well this year, to pick a new New Year’s Eve theme. This year, I am sharing my theme with you because it may require your participation. This year I will focus on watering the flowers. This is kind of an odd one for someone who is extremely allergic to the outdoors, but it is something that has really begun to resonate with me. Like, if I was someone who was big on tattoos, I would get it inked somewhere. So what does it mean? In order for flowers to grow, they must be watered and for relationships to grow, the same must be done. So that was my focus when I sat down to write my resolutions. This will be a year spent with people. It is also going to be a frugal year for the Ferrignos. Most nights out will need to be free or really cheap so that we can start dumping money on our student loans. This is a debt that weighs very heavy on Brian’s mind and one that I would like to relieve this year. I am at peace with the fact that we could really have them for the next 15 years but this bothers him and we need to remedy that. His piece of mind is very important to me. So, I look forward to spending time with all of you in creative and inexpensive ways and watching our lives grow together this year! (I will refuse to let you pay for me. A beer/wine/coffee or an ice cream is really cheap and a walk, run or hike is even more inexpensive!)

Since we will be spending much more time at home, look for an exciting new teambfsquared site that will be co-created by Brian and me. When we were dating and married before children, we loved to go out to dinner and spend hours talking over a glass of wine. It was our way to water the flowers and keep our relationship growing. Now, as we set forth to get rid of student loan debt, we are looking forward to the time at home working together and building new memories right where we stand. I am really excited about what we have planned and using it to showcase my first children’s book (which is a collaboration between Jen Varn, Molly and myself) and hopefully many more books and blog posts in the future!

So come for a run or a walk with me! Come sit in my back yard and share a beer or join us for dinner! Let’s watch our children play on playgrounds and listen to free music in the park. We look forward to watering the beautiful flowering relationships in our lives this year. We can’t wait to see where we land next December! 

Sunday, November 5, 2017

In the face of tragedy, we need a different plan...

We have had a very busy and exciting weekend, and all of us are lacking in the sleep department. "No songs, no books, Mommy" my son said as I finished getting him into his pj's. I asked him if I could at least rock him and he said "yes." So we sat in the rocker and did just that, rock. Eventually, I stood up with him still snuggled on my chest, and he fell asleep. He's almost 3 now, so that just doesn't happen very often anymore.

A child's breath changes when they fall asleep, so I knew he was asleep before I asked Brian to look. Thumb in his mouth, his body was relaxed and heavy. I could have stayed there forever but his sister called so I took one more deep breath of his scent and placed him in his crib, taking a moment to be thankful before moving on to her.

I said good night to my daughter and went downstairs to spend a few free moments catching up on Facebook. I was caught off guard. Another mass shooting. More children dead. More lives forever altered. I am glad I asked my son if it was OK to rock him tonight. I am thankful that I took the time to do so. We don't know in this day and age what is going to happen. The man, like others before him, attacked a church. Each week we take our children to a church, so that they can learn the values we hold dear. The people today were just going about their lives in a sacred space.

So in the wake of another tragedy, let's change the conversation. Let's not turn it to gun debate or who qualifies as a terrorist, let's dedicate this moment in time to a better discussion. Let's concern ourselves with the arduous task of getting people to care about their neighbors again. Let's dedicate time and money to recognizing and providing assistance to those who are struggling with feelings of isolation, abandonment, fear of the unknown and loneliness. Let's not provide those same people with access to extremist groups, websites detailing how to pull off attacks and movies/television that depict events like this. Instead, let's surround them with resources to help them feel supported and cared for.

In teaching we are told that some of the most difficult students are the ones who are in the most need of love. What if we looked around us and acknowledged the humanity in each person we pass on a daily basis, maybe we could prevent the next attack. Maybe, I would be able to tell my children "I love you very much," every morning when I leave for school without stifling the urge to say it another time just in case something happens today. We have to do something. This can't be come normal. Something has to give. We need to be the light in this world that is becoming darker by the second. It is our choice, and I chose to act. One hello, one hand shake, one shoulder to lean on or one "I hear you." might make all the difference in the world.