Bloggy Moms

Sunday, June 18, 2017

A Fathers' Day Tribute to a Very Special Daddy

As I child and young adult, I never really celebrated Fathers' Day much. In fact, the only thing I knew was that my younger brother was born on this blessed day. I had the privilege of having an absentee father. Since he was never around during my formative years and when he finally did show up, he was less than stellar, I appreciate even more my little girl's father.
When I was dating the man who would I would eventually marry, he told me that he wanted to have a girl to spoil like I never had. He wanted me to see what true love was. I believe that God does grant you the desires of your heart, so it was no surprise to me when I learned that I was pregnant with a girl. My husband kept his promise from the moment our special girl was born.
At times I was jealous of their bond. She did many firsts with him: first giggle, first word (DaDa) etc. Overtime, I grew to appreciate this special bond. It was like watching the childhood that I should have had.
When we first learned that our daughter possibly had a mental illness. He stuck by me. He vowed to keep being the kind of dad our special girl needed. It was hard work. It nearly broke him to see her in so much distress. Together we worked to get her the help that she needed.
Then once she was stable, we noticed that she had many characteristics similar to those of an autistic. This led to an eventual diagnosis of autism. It was another blow to my sports loving husband as he saw his dreams for her slip away. We both worked on new dreams for our daughter. The additional diagnosis of autism was just sinking in when we learned that our daughter had a brain tumor and needed emergency surgery.
Again, my husband, my Knight in shining armor, stepped up to the plate. He kept a vigil by her bedside those first few days. We were led to believe or led ourselves to believe that our daughter would be cured once the tumor was removed. Nothing could be further from the truth.
During this time, my husband had been reinventing himself. He accomplished his lifelong dream of becoming a teacher. Unfortunately, the only job he could find took him hours away from his precious daughter. So he began a quest to find a teaching position closer to home. It became clear very early on that in order to find a job closer to home, he'd have to move his family. A move that took us miles away from family and friends. A move that at first our daughter resented very much.
Shortly after our move, we noticed that the symptoms that led us to the diagnosis of the brain tumor, had returned. I put on my mama bear hat and went to work finding answers. We learned that the tumor had, thankfully, not returned, but its absence was sending mixed signals to our girl's right side. Her speech, swallowing, and movement we affected. While I set about getting our daughter the necessary treatment, my Knight set about providing for us. He was very much a part of any decisions that were made on her behalf. He never told our daughter that she couldn't do something or that she looked funny. These were phrases that I'd heard from my father. I am so glad that my daughter only hears encouraging phrases from her daddy.
Last week, our daughter underwent anesthesia for Botox injections that may or may not improve the dystonia and spasticity on her right side. Since it is summer vacation, my Knight, my daughter's daddy, was able to be present after she woke up. I know he'll continue to be her biggest cheerleader whatever curveballs life throws her way.

Any man can be a father. It takes someone very special to be able to be called Daddy

Tuesday, June 6, 2017

Tell me Again Why Can't I Help in My Special Needs Child's Classroom?

My daughter has been in Special Ed since third grade. Well technically, since second grade when she was in the Resource Specialist Program at our local elementary school in Southern California. Since needing more supports, first in a Special Day Class on a General Education campus and eventually at a special school for students who need even more supports, I have never been made to feel welcome in her classroom. Never once have parent volunteer slips been sent home. I've always accepted this at face value.

Recently, it's started to become more of a problem. My daughter's school is having an Open House/ BBQ that parents are invited to attend. Unfortunately, it falls on a day when my daughter will be at a very important doctor's appointment that we have been waiting for months for. It cannot be rescheduled. I thought I had the perfect solution, attend the class party celebrating the class's completion of a virtual trip around the world. Parents were asked to contribute potluck dishes from countries that were visited. The email invitation did not specify whether or not parents could attend, so I asked the classroom teacher. I actually had to ask twice. Eventually, I was told that because the party fell during school hours, parents were not to attend. Makes no sense to me. Especially, since the Open House/ BBQ is during regular school hours. My daughter's school even holds an annual Thanksgiving Feast during school hours. Parents are invited to both of these events.

So why is it that parents of gen ed students are welcome in their child's classroom, but not if that same child is in an SDC class or at a special education school? I've heard that schools/ districts do this for privacy reasons (FERPA/HIPPA), however as a former classroom teacher, I know that even General Education teachers are not allowed to divulge private information yet parents are welcome to volunteer in the classroom.

I've also heard the excuse that students do better when their parents are not in the classroom. Here's the thing though. Shouldn't I be given the opportunity to at least volunteer? Then I can decide for myself if I want to continue doing so. I haven't even been asked to volunteer in the office. Heck, I'd be happy to make copies occasionally. However, when it is convenient for the school i.e. they need my support with a field trip, then all of a sudden the volunteer gates are open. I call that a double standard.

Honestly, when things are kept under a veil of secrecy one can't help but to wonder what the big secret is. I'm all for transparency. Thankfully, our school district has scheduled one more IEP, on the last day no less. When they ask for parent input, I'm going to ask to see a copy of the school's policy regarding parent observations. It will be interesting to see what the school and district's response is. Stay tuned.

What are your thoughts on this? Experiences? Any insights would be appreciated.

I'd love to know what this little cutie is up to during the school day. 
Wouldn't you, if she were your child?

Friday, March 17, 2017

A Letter of Thanks from a Grateful Mom

Here's the email that I sent my daughter's Special Education teacher this morning:

Good morning,
I just wanted to take a few moments to tell you how much our family appreciates you. Both my husband and I know what it takes to be an excellent teacher since I have extensive experience and he is currently teaching. 
Our daughter has been bumped around quite a few schools. She's had some bad teachers, some good teachers, but only two who I would consider fantastic. You are one of those two. 
I know that special needs parents can be quite demanding. Even so, you always make time to listen and hear us out. That says a lot about your commitment to your students. 
As you teach you will come across some amazing people: parents, teachers and administrators. You will also see some who are less than stellar. The school you're at  \has a  wonderful staff led by fabulous director. Learn from her. I can tell she has a lot of wisdom to impart. When you come across those who make you question what you do and if you are doing enough, remember that you are and that you are amazing. 
Education has a lot of ebbs and flows. Right now is a tough time to be a teacher. Stay strong. Be confident in your talents and love for your students. You are doing such an important work. You are pouring your life into our nation's future. Some of the students you teach have been tossed aside by others before you. You will pick them up and give them hope again. 
Thanks again for being my daughter's teacher. We are blessed. 



As you can see we're pretty happy and know how this teacher is pretty special. Let's salute and applaud all of the amazing Special Ed teachers out there.

Wednesday, January 11, 2017

The Amazing Thing My Daughter with Bipolar Disorder Told Me

Menopause is a real beast! In the last few months, I've found myself crying over the littlest things. Some days a simple smile will drive me to tears.  Yesterday, it was a comment that my daughter made.
I was taking her to school after a morning appointment. We were chatting about some plans that she had with her father later that evening. I remarked how much fun she'd be having going to a diner that she and I had previously gone to. She replied that I was welcome to join them. It was at this point that I felt the tiniest of tears forming on my eyelids. I told my daughter about them and how silly and stupid I felt. She reassured me by telling me that it wasn't silly or stupid. I then went on to tell her how much it meant to me to be invited to join them on their father/ daughter date.
When my daughter was so unstable, she hated me. She resented that I had quit my job to care for her. She only knew her father as her caretaker. He was the stay at home parent since I was so busy working full time.  As I drove along, I reminded her of these things. While we reflected on some very dark days in our family's history, my daughter got very quiet. Then, in what can only be called a moment of clarity and wisdom, my daughter said, "Mom I'm sorry for any physical, emotional or mental harm that I caused you in the past. I'm sorry for any scars you have on your heart that are from me. I hope that you will forgive me."
At that point, I lost it. The flood gates were opened. These very special words just came out of a 12 year old child's mouth. Who was this child? Wow! I never thought I'd ever get an apology from her. If I did, it wouldn't be for years to come.
As I heard these words, I thought of all of the moms and dads who may never get apologies from their children. Some parents of  adult children with mental illnesses are entering their twilight years. I consider these words a priceless gift.
Once I'd dried my eyes with the back of my sleeve, my daughter went on to tell me that she doesn't like thinking about the times when she was aggressive. For her they are painful memories. She knows talking about them is part of the healing process for our whole family. She explained to me that her experiences, good and bad, with mental illness; are why she wants to continue to tell our law makers about changes that need to be made in our mental health system. She said, "As long as they want me to, I will keep going to Washington, D.C. I want to let others know that it is OK to have a mental illness. I'm not a bad person. My brain was all jumbled up and confused."
Soon after this, we arrived at her school. Before exiting the car, I asked her if I could share her powerful words with others. She graciously agreed.
I understand that my daughter still has many more years under my roof. Some of those years may be very turbulent ones. For today, I will cling to the words that were music to my ears. The memory of these words may serve me well during periods of instability. They show me what my daughter's true heart's desire is. I will continue to help her advocate for herself and others like her.
Now excuse me while I get some more Kleenex.

My daughter and I on Capitol Hill in 2016

Saturday, January 7, 2017

How an IPad Was the Hero of the Day

I'm really good at managing all of my daughter's appointments and playdates. When it comes to managing our family's schedule, I sometimes fail. Yesterday, was one such day. My plan for the day included helping my daughter clean her room, doing laundry and a playdate for her in the afternoon. About 4 a.m. I woke with a start. Something in the back of my mind told me that my Knight and I had a very important meeting later that morning. I got up out of bed to check my calendar. Sure enough, the appointment was planned for the time our daughter was supposed to be at her special needs camp. Additionally, there was paperwork that we needed to fill out. 
My Knight and I had already told Princess she would not be going to camp so that meant we'd have to bring her to the meeting. As for the paperwork, I went back to bed then printed it up at a more respectable hour. 
I couldn't cancel our meeting because we'd already cancelled it earlier in the week. I didn't want to go back on my word about my daughter not having to go to camp. I knew since she'd already had three failed days there, a fourth one was inevitable. We also don't have access to a big kid sitter. I did what any mom in my situation would. I made sure the iPad was fully charged, located my daughter's blingy headphones and put all these items in her backpack along with a snack. 
While we were at the meeting, the magic iPad did its job. It cast a spell on my daughter. She was the perfect angel the entire 1 1/2 hours my Knight and I were in our meeting. Basically, it did the job of a sitter. Everyone in the office was convinced that my daughter was the more perfectly behaved child they had ever seen. 

Thanks Apple for saving the day!