Mom Shark blog

Special Education Does Not Mean Less Education

Balance — September 17, 2019

Balance

Happiness is not a matter of intensity but of balance, order, rhythm and harmony.” Thomas Merton

So if your like me you may often wonder if your life is truly balanced or at times if balance really exists. I recently accepted a job at a local University and started the same day my son started his new School and yes I am thrilled to be working at a job I enjoy with people I enjoy but I am not without conflict. While my son is safe and supported in a wonderful school with highly trained staff I still feel torn as to if I should even be working – you see I have been my sons voice and advocate for so long that it will ALWAYS be a challenge to know when to pull back. My purpose for the last decade has been my son, his education, his needs, his wants, his likes, his dislikes, his diagnosis, his doctors, his hobbies and though completely necessary it came at a cost. I can say with 100% certainty that making my son my whole life for so long took its toll on me mentally, physically, emotionally, spiritually, financially and I believe had I practiced finding balance more I would not have paid such a high price.

I will never regret the hard work or tireless nights I put in for my son and his future but being completly consumed by that only was not only not healthy but really did not get me anywhere. I lost me, I lost what gave my life fullfillment, I stopped connecting with my husband, I stopped being creative, I stopped growing, I stopped living, stopped loving – I was merely surviving. I should add that in my early 20’s I was diagnosed with Bipolar 2 disorder and while I was taking medication I still wasn’t practicing self-care or any sort of balance and there were times I spiraled showing only a shadow of who I used to be.

If I could tell the mom I was ten years ago one thing it would be to stop and “Breathe” I would tell myself that I matter too. That I am more than just Clinton’s mom or Charlie’s wife. I would tell myself to take care of me. I would tell myself to eat healthy, take naps, exercise, read a book and stay in touch with myself. I would tell myself that I was a good mom and that I was good enough. I would say trust yourself Cathie. There is so much thrown at you when you have child who has profound obstacles that you really do not know which way is up andyou just start throwing spaghetti at the wall to see what sticks. There is an absolute overload of information thrown at you without an equal amount of support, it’s like being a rat in a maze but you never get the cheese. I love my son and I wouldn’t change him if I could, hes amazing and these last ten years have taught me so much far beyond Dyslexia, ADHD, Autism, scores, benchmarks or Special Education – I just wish I had put it together soon.

Balance is tricky because we live in a society that is always telling us every chance it can we aren’t good enough, fast enough, thin enough, pretty enough, successfull enough so we are in the cycle of more. We feel behind the eight ball before our feet have even touched the floor in the morning. There are days I am still a hot mess and nothing goes right and my clothes don’t even match, but when I get to the end of my day if I know I did my best and gave it my all – I let it go and try again tomorrow. I enourage you to ease up on yourself, be kind to yourself, take time for yourself and love yourself – Your worth it and if you need help, ask for it. Being a mom is not easy let alone being a mom to child who has different abilities and that’s not because of the child it is because the world tries to make your square peg fit into a round hole. Trust yourself. Listen to your child especially what they don’t say and take time to breathe, take time for you, for your spouse.

Out of Line — September 9, 2019

Out of Line

“Out of Line” or “Out Spoken” is something I have been called alot in my life but never more then when I had to be my sons voice. I make no apologies for being my sons voice, making those in positions of so-called power uncomfortable or for being “that mom.” If your like me your child is your life and you will do anything and everything for them including getting completely out of your comfort zone and ruffle whatever feathers need ruffling on their behalf – with no apologies. I was never rude or disrepectful to teachers, administrators or any staff I refused to let my sons needs not be met and you should to.

Rewind a year my son exited his bus in tears, shoulders slumped over telling me how his 4th grade teacher told him he would never read and I knew by the look in eyes he was crushed. Thats when my foot hit the gas and I didn’t look back. I hired an amazing educational advocate, called an emergency IEP meeting and we had my son removed from that teachers classroom. That meeting was one that I think about every damn day, the silence in that room, the lack of ownership and accountability by all present, the excuses, the lies and the tears in that room lit a fire in me that only gets stronger by the day.

Under the advice of my very experienced advocate I pursued outside private evaluations and that is something I highly reccomend. One thing you must understand is that testing performed by the school, inside the school might save you financial expense, but I can promise you benefits only the school, not you and certainly not your child. The benefit of private testing is that private testing gives accurate data and facts that you can take to a meeting and that data and those facts give you ammunition to fight for your child.

One invaluable evaluation was the Neuro Psychological testing. The most beneficial factor of neuropsychological assessment is that it provides an accurate diagnosis of the disorder for the patient when it is unclear to the psychologist what exactly he/she has. This allows for accurate treatment later on in the process because treatment is driven by the exact symptoms of the disorder and how a specific patient may react to different treatments. The assessment allows the psychologist and patient to understand the severity of the deficit and to allow better decision-making by both parties. The specific sub-tests done are discussed by the doctor with the parents and varies from child to child based on symptoms and medical history.

The second evaluation that gave us valuable insight and date was an assistive technology evaluation. Assistive technology (AT) is assistive, adaptive, and rehabilitative devices for people with disabilities or the elderly population. People who have disabilities often have difficulty performing activities of daily living (ADLs) independently, or even with assistance. Our son had his done by the wonderful specialist from Commuincare I cannot say enough how amazing this company is.

The third evaluation that gave us a most complete picture of my son was a thorough speech and language evaluation performed by UMASS in Amherst, MA. They sit with you and go through not only the medical history of the child but who this child is, they listen to the parents and that in my opinion and experience is something that is not valued enough. They test not only for speech and communication disorders, but perform hearing tests and check to see if the mouth and jaw are working together properly.

I cannot tell you how many meetings and meetings about meetings I have been a part of but I can tell you I had seven meetings throughout grade four alone. In those seven meetings alongside my Advocate armed with facts and data I took my power back as parent, I took my son’s future back and handed it to him in the form of White Oak, I gave him something more important than education – I gave him hope, I gave him a community who understands. The road was anything but easy and I am learning everyday, but as I look back how everything over the last ten year played out, the good and the bad I will not regret being called Out of Line or Out Spoken and neither should you. Fight with dignity. Fight with grace. Fight with Love.

Here are some resources I hope help you.

Speech and Language Kids

ASHA

CDC – Child Development

Understood

Wrights Law

And you…

New Beginnings — August 30, 2019

New Beginnings

Today was my son Clintons first day at White Oak which is a private school for children with non-verbal learning disorders such as Dyslexia. It is small, about 80 students spread out over 12 grades, but that is only part of what makes White Oak unique. It is very supportive, nurturing envirornment full of specially trained staff who truly give their all to these children. That is not to say that public schools do not have that, but unfortunately the special education system is broken and children like my son who have different abilities are getting just passed thru because their needs are expensive.

I can remember the start of last school year everything was different – it was very heavy. I knew from day one of 4th grade something needed to change for my son. He came home from that first day head hanging low and in tears saying his teacher had told he would never read and that he was a distraction, he was too fidgety, he was lazy, he wasn’t trying. My son receieved a Dyslexia diagnosis at the age of 5 and he has an IQ of 95 (average range) and he was placed in what Westfield Public Schools call an “Essential Life Skills” class. Essential Life Skills classrooms are made for children who are functioning at a lower cognitive ability (IQ range 50-70’s) well thats not my son. He was a Dyslexic child with an average IQ who had Atypical qualities – he did not belong in Life Skills. So I demanded an emergency IEP meeting, hired an educational advocate and had him moved to more appropriate classroom settings, one of which was an Orton-Gillingham based classroom. To be honest, yes his spirit improved, his smile returned and he started to love learning again but our battle for his future had just begun. What followed was more testing which included a Neuro-Psych evaluation, an assistive technology evaluation, outside speech and occupational therapies, meeting after meeting, phone call after phone call, hundreds of emails, faxes, texts, and questions. I did not want my son to be anyone but who he is in his truest form but there are skills he needs that I cannot teach him such as writing, reading, math and social.

With each small victory came double the defeat, errors big and small were revealed, some willingly and some forced. Everyday felt like groundhog day I knew where Clinton needed to be, but I just didn’t know how to get him there. There was no peace for me during that year as I was also recovering from a rotator cuff surgery that I was not prepapred for – I wasn’t able to work, I was stressed, I wasn’t sleeping or eating right – I was drained but somehow everyday I got up to fight another day.

Fast forward to this year I had never seen my son so happy on the first day of school! He was all smiles, he was excited, energized and joyful and I felt like I could breathe for the first time in 10 years. When I picked him up he actually gave details about his day instead of one word answers, he said he felt he belonged like he was home. White Oak isn’t a magic pill they still have the same issues other schools have, but what differs is how they handle it. The treat each child as an individual, they give them realistic goals and expectations, they encourage communication and parent involvement. Isn’t that what we all want? to be heard? thats what I wanted – so many times in those meetings I felt as though I was being talked over and not listened to as though I didn’t even know my son because I didn’t know what all the scores and terminology meant. While future meetings will be far better I have not forgotten about the child who cries or the parent who cries with them. I have not forgotten the anxiety, the pain, the sadness, the confusion and the anger. I do not have all the answers but I do know that thru this process of helping my son – I discovered my purpose – To help those where I was.

The Oak Tree

by Johnny Ray Ryder Jr

A mighty wind blew night and day
It stole the oak tree’s leaves away
Then snapped its boughs and pulled its bark
Until the oak was tired and stark

But still the oak tree held its ground
While other trees fell all around
The weary wind gave up and spoke.
How can you still be standing Oak?

The oak tree said, I know that you
Can break each branch of mine in two
Carry every leaf away
Shake my limbs, and make me sway

But I have roots stretched in the earth
Growing stronger since my birth
You’ll never touch them, for you see
They are the deepest part of me

Until today, I wasn’t sure
Of just how much I could endure
But now I’ve found, with thanks to you
I’m stronger than I ever knew.

Topic Tuesday Back to School — August 20, 2019

Topic Tuesday Back to School

“You have brains in your head. You have feet in your shoes. You can steer yourself any direction you choose.” – Dr. Seuss

There is no denying it we are in full swing of the Back to School season! If your like me back to school is always met with mixed feelings of excitement and nerves and this year even more so. You see this year Clinton will be starting at a new school, White Oak – here in Westfield,MA. White Oak School offers a variety of educational services for students with various disabilities. The school serves children in grades 2 through 12. It enrolls students suffering from dyslexia and other language-based learning problems.  The journey to get Clinton transferred to White Oak will be of topic next week. Now just because Clinton will be in a more appropriate educational setting does not mean I am without nerves, anxiety or worry. You see parents like myself who suffer from what I call “Educatioal PTSD” after being put through wars for their childrens education find it very difficult to trust the process and educators.

I would like to talk a little bit about ways to help your child and you adjust to back to school no matter your childs ability. Every child matters and every parent matters. It is easy to get caught up in back to school shopping for clothes, shoes and supplies, and yes those things matter but what if we focused a little bit on mental and emotional back to school prep? What do I mean by that? I mean talk to your children ask them what are they excited for this year, what do they look forward to learning, how are they feeling, what after school activities do they want to do, what are they struggling with. If expressing themselves verbally is hard ask them to draw it, sing it, dance it the delievery does not matter, just the message. I like to do this because I want to make sure my son and I are on the same page, I want him to enjoy not just school, but learning in general. I have always considered being a parent more like that of a tour guide then a boss – I always want him to feel heard like what he wants and needs matters, because it does.

I like lists it helps keep me somewhat organized and somewhat on track so I put a list together I hope can be of some benefit to you and your family.

  1. Establish a set “family time,” whether it’s during dinner or before bed
  2. Visit the school with your kids so they can get familiar with their new environments.
  3. Arrange playdates with two or three of your kids’ friends to rebuild existing social ties.
  4. Have your kids set realistic goals for the new year, such as reading 30 books.
  5. Create an after-school schedule that allows time for snack, relaxation, play and study.
  6. Model good behavior by doing your own work/projects while your kids do homework.
  7. Inventory your kids’ wardrobes and toss/donate things they’ve outgrown.
  8. Schedule at least one 30-minute block in your calendar each day for self-care.
  9. Create a rewards system for when kids meet goals, like helping around the house.
  10.  Do something fun to diffuse this stressful time of year for all of you!
  11. Talk openly with your kids about their feelings about returning to school.
  12. Visit cultural attractions like museums to shift their brains into “scholar” mode.
  13.  Refresh your rules about screen time for the school year. What’s allowed and when?
  14. Give kids a specific day to when they can choose all the activities you do together.
  15. Help your kids develop a filing system for organizing their documents for each class.
  16. Touch base with teachers early on to troubleshoot any issues your kids may be having.https://www.care.com/c/stories/3264/20-questions-to-ask-during-a-parent-teacher-c/
  17. Have your kids pack their school bags before they go to sleep that night.
  18. Discuss the different pros and cons of bringing versus buying school lunches.
  19. Use sticky notes to flag important items that kids should pay attention to.
  20. Use positive phrasing, such as, “You can go outside after your homework is done,” rather than, “You’re not going outside until this is finished.”
  21. Use an egg timer to get your kids used to focusing for specific periods of time.
  22. Establish a specific space like the family office as an official “homework station.”
  23. Create a list of fun after-school activities and games to keep your kids entertained.https://www.care.com/c/stories/3176/25-after-school-activities-and-games-for-kids/
  24. Map out a bathroom schedule to avoid family fights for bathroom time.
  25. Take a breath! – You got this! every school year will have its challenges, its ups and downs, goods and bads so enjoy the ups and be kind to yourself on the downs. Sending you good vibes for a good year 🙂

Topic Tuesday — August 13, 2019

Topic Tuesday

“Blowing out someone else’s candle doesn’t make yours shine any brighter”

I remember as child being bullied, laughed at, picked on and sitting alone at lunch because I was chubby, shy and because my mom made my clothes. I remember sitting alone on the bus holding in tears because I so badly wanted someone to sit with me and talk.  Most would think that because I went to Catholic school for elementary  there would not be bullying, but I can assure you there was plenty – playground, lunch room, classroom, bathroom, it happened. I share this experience with you because at one time or another most have been bullied or picked on in some way and the sadness, loneliness, depression confusion is something we can all relate to.

Fast forward many years when my five month old son needed a helmet because the back of his head was flat from a tough delivery in which he almost died. I remember walking through the grocery store people pointing, laughing and even shouting cruel remarks about my son wearing a helmet. I remember tearing up not out of embarrassment but out of sadness that people, grown adults could be so insensitive and mean to a child. I cannot explain it but inside I had a very unsettling feeling that this would not be the only time my son would be bullied or that it would bring me to tears.

Having a child with special needs especially in this day and age paints a very big bulls-eye on your back and makes both you and your child a target for bullying. I have had parents make fun of my son flapping his arms, I have had teachers tell me my son is a lazy, class clown who can not focus and most surely will never read, Clinton has come home from school in tears because he was wasn’t included at recess because he didn’t understand the rules, I have been told I need to “toughen” my son up – give him more sports less arts, I have been made fun of by parents/teachers alike because of my car, clothes, financial status, hair cut and even being “that parent” in a meeting. Over the years I have learned how to handle such comments but as a parent seeing your child cry because they were bullied, well that takes a little more patience and practice.

Below are some very supportive resources I would like to share with you.  

1.)https://www.stopbullying.gov/  provides information from various government agencies on what bullying is, what cyberbullying is, who is at risk, and how you can prevent and respond to bullying.

2.)http://www.thebullyproject.com/ The Bully Project is the social action campaign inspired by the award winning film BULLY. They have sparked a national movement to stop bullying that is transforming kids lives and changing a culture of bullying into one of action and empathy. 

3.) https://www.stompoutbullying.org/ The leading anti bullying nonprofit, STOMP Out Bullying is dedicated to changing student culture, reducing & preventing bullying, cyberbullying & other digital abuse.

4.) https://bullyingnoway.gov.au/ Bullying. No Way! provides information and ideas for students, parents and teachers. If you want to talk to someone in person or online click here to get contact details for helplines.

5.) Each Kindness  by Jacqueline Woodson – In this award-winning picture book, Chloe and her friends refuse to play with the new girl, Maya. It’s not until Maya stops showing up for school that Chloe realizes the impact of her behavior and the missed opportunity for friendship. It delivers a powerful message about kindness and the ripple effect of our actions. Ages 7+

6.)  Out of My Mind by Sharon M. Draper – Melody is brilliant, but nobody knows it. All they see is a girl stuck in a wheelchair who can’t speak, write, or move due to her cerebral palsy. When Melody gets integrated into a traditional classroom, people finally see how smart she is, but she also becomes the target of teasing and bullying from several kids and the teacher, too.  Ages 10+

7.) Something Else by Kathryn Cave – This book is perfect for reassuring any child that being different can be a positive thing. Something Else is a lonely creature, excluded from everything because he is different. Until one day he meets someone even stranger than him. He rejects this new creature for being so peculiar, but then realizes that this is exactly what he has experienced. 

8.) The Juice Box Bully Empowering Kids to Stand Up for Others by Bob Sorson & Maria Dismondy. When it comes to anti-bullying books, The Juice Box Bully is a must read for children, as it is simple to read with a powerful message. Being a witness to bullying and doing nothing is just as bad as bullying someone yourself. In this clever story the kids at Pete’s new school take action when they see Pete behaving badly. Pete’s classmates tell him about ‘The Promise’ to stop bullying. But will Pete make ‘The Promise’ or keep on being a bully?

9.)https://suicidepreventionlifeline.org/ We can all help prevent suicide. The Lifeline provides 24/7, free and confidential support for people in distress, prevention and crisis resources for you or your loved ones, and best practices for professionals.

10.) Keep the lines of communication open. Everyday our lives are getting busier and busier and at times I feel the root of Bullying is that we have stopped connecting as people.  Talk to your children and make sure you have someone to talk to you.

 

Self-Care Sunday — August 5, 2019

Self-Care Sunday

“Talk to yourself like you would to someone you love”

I am a firm believer in Self Care, but sadly in this day and age it seems like Self Care is often overlooked or looked at as unnecessary. Self Care doesn’t have to mean an extravagant day at the Spa or an expensive vacation, it can mean taking yourself out for coffee, watching a favorite movie, eating healthy,drinking enough water, dancing in your kitchen instead of cleaning or even something as simple as speaking kinder to yourself. 

For a very long time I didn’t practice self-care I practiced care taking and it lead to exhaustion, resentment, tears, anger, frustration and anxiety which didn’t make me very much fun to be around and that is when I realized something needed to change…I needed to change. I took a step back and decided I needed to learn how to practice not only self-care but self-love because to me those two very important things go hand in hand. One of the biggest things I did was stop beating myself up for not getting every little thing on my silly to do list done. I stopped the record in my head that just kept playing my faults or mistakes. I stopped comparing myself to everyone. I started just focusing on making Cathie healthy inside and out and I left the word “perfection” out of it. I wish I could tell you I get it right everyday but I don’t and in fact there are some days I am just a hot mess and coffee is my spirit animal – the only difference now is I can laugh at myself and still love myself thru those days.  

Self-care applies to everyone, not just parents. It is vital we all take care of ourselves because in taking of ourselves we take care of each other and the world around us. I don’t pretend to have all the answers, but like a good mom I have list👍. Below is a list of some  self-care ideas and like I tell Clinton, get creative find something that works for you. 

  1.  Positive affirmations
  2. Breathe deeply
  3. Read
  4. Watch positive Ted Talks YouTube https://www.youtube.com/user/TEDtalksDirector
  5. Walk in nature
  6. Exercise
  7. Buy yourself flowers
  8. Hug someone
  9. Sing
  10. Watch the sunrise
  11. Stretch your body https://romwod.com/ (my favorite)
  12. Stop comparing yourself to others
  13. Take a warm bath
  14. Start a gratitude journal
  15. Unplug by a certain hour everyday 

And in case no one told you today: You are strong, smart and capable of anything. 😉