Monday, September 23, 2013

How I Failed as a Parent and an Advocate - An IEP Lesson Learned the Hard Way

"How is school going?" I was asked by a friend. 

Um, well. That's a really good question. Up until September 11th I thought school was going really well. That is, the four days that Joey had been in the public school Early Learning Program. 

Photo by Nat.
The week before, one of his therapists had called to "get more details" about Joey's use of a mobile stander and then asked when I could stay after school to "fill in some information" for her.

Of course I would stay after school and talk about Joey and what he is learning to do, what he has tried to do, what he is working on.

I had no idea that walking into his school that day I was actually being brought into a formal meeting with multiple therapists, a student therapist, his teacher and other individuals who work with him. 

Little did I know that what I thought was going to be a one-on-one casual meeting with one of his therapists was actually going to be a full on IEP Revision meeting of which everyone else seemed to know was happening except for me. Or my husband. Or Joey who had just gotten out of school and was so excited to see me that I spent the entire time trying to hold him and look at him while he turned my face to see his (which is totally adorable, by the way).

Photo by Nat.
I was already a little unsettled after watching the memorials of September 11th on the news all morning and watching the planes collide into the World Trade Center again. On September 11, 2001 I was a fresh Lieutenant Junior Grade working as a JAG officer in Washington, DC.  As a result of September 11, two of the men I had met and dated while in the Navy where both killed while serving overseas in the aftermath of September 11. It's a tough day. It's not an excuse by any means, but I was definitely not on my game.

Furthermore, I have this ridiculous problem in that I want Joey's school and teachers and therapists to like me and to like him so that they treat him well. I don't talk about this much, but having a child who cannot speak and who cannot walk and leaving them in the care of strangers for 2 1/2 hours is one of the hardest things I have EVER done in my life. I want to trust everyone in his school. I want to believe that they have Joey's best interests at heart. I want him to be a good student and to learn and to rise to their challenges. I want him to be a success. I want him to be happy-- but at the end of the day, it's their word I have to believe and it's their word I have to listen to-- simply because Joey has no way of telling me.

So when I asked to see his therapist and was ushered into a large room with multiple people and a conference table I was flabbergasted. What was going on? Wasn't I just meeting with his therapist to fill in some details?

Photo by Nat.
No. I wasn't. I was right in the midst of an IEP meeting that I had no clue was going to happen. I didn't have Tom there. I had Joey sitting on my lap climbing all over me and the entire time I was trying to please the adults in the room instead of looking out for Joey's best interests.

I can't even begin to list the ways I failed as a parent and as his only voice. His only advocate. The only person in that room who has a moral obligation to do right by him. Oh, how I failed. It was an epic, epic fail.

So much so that I stayed up all night that night and the next night playing it over and over in my head and asking myself why I let it happen. Why didn't I say I wasn't comfortable? Why didn't I ask for it to be rescheduled? Why?

They cut his therapy by half-- which I understood to a point. A fair reduction would have been 40% and that is what we are going to try and go back and revise. And the reason a reduction is fair is that when the IEP was written, the school assumed Joey would be there 5 days a week, but instead he goes there 3 days a week and then to a private preschool (It's All About Kids)the other 2 days of the week. 

Then they removed two of his goals for the year because they told me he had "Zero percent chance of meeting those goals during the year." Can you believe it-- I just sat their and shook my head up and down as though I agreed to these cuts. As though I agreed to their determination that these goals were clearly beyond Joey's abilities over the course of the school year. That is what was the worst part of the entire situation- not that they were having the meeting without letting me in on it ahead of time, but that I didn't resist. That I didn't disagree- that I didn't stick up for him. That is what really kept (and keeps) me up at night.

He just seems to be interested in toilets and in standing. I feel like we could meet these goals...

He had been at school only 2 days when these decisions were made. This "meeting" took place on his 4th day of school.

The goals that Joey has "zero chance of achieving" by June 2014.

1. Standing up and hanging his backpack in his school cubby.

2. Sitting on the toilet without resisting for 45 seconds each day.

Seriously? Seriously?

Joey painting at It's All About Kids- the private preschool he attends.

And yet-- the people pleaser in me came out. I SIGNED THE IEP.

"Nooooooooooooo," you say.

"Yes," I say. I did it and I would never in a million years recommend that anyone do what I did that day. 

I am an attorney. I went to law school. I went to JAG school.  I KNOW BETTER THAN TO EVER SIGN SOMETHING RIGHT AWAY!!!!

It was an epic fail. One that has caused me incredible heartbreak and stress over the past two weeks. 

On the weekends we drive around looking at other neighborhoods wondering if we should move school districts. 

We went to the IEP training. We heard horror stories. We told ourselves that wouldn't be us. We would know better. We would do better by Joey. Well, let me tell you, the best intentions line a road to hell and back.

Who am I to preach to advocate and be the voice for your child, when I can't even do it myself?

I've beat myself up and down over this and we are moving forward with a new meeting tomorrow.

My best advice to other families is to take a deep breath.

If you are in a situation you are uncomfortable in-- tell them so and ask to reschedule to a better time when your support person can be there and you can have appropriate child-care so you can focus.

Phone a friend. This is why we are so active in our local Down syndrome community. When I was on my second night of not sleeping I called one of my Mama Mentors. She immediately knew what to do. She put me in touch in with an advocacy organization and they walked me through the next steps.

I called the school, said I would like to rescind my signature and would like a new meeting so that my husband could also attend and so we could have child care for Joey so we could focus.

In the meantime, we have talked about these goals and we are working on them at home. We are working on them at his private preschool (which offered to immediately try to work on these goals).  We have strategies and ideas about how to make these goals work-- a photo in his cubby, us practicing with a lower hook at home and slowly building up, us putting him on the potty 3-4 times a day for 45 seconds.

We want to work with the school. And from what we have seen we really believe that his teacher is an excellent teacher. We realize there are budgets, there are measuring tools, there are bureaucratic elements that feed into every decision, BUT we also realize that this is Joey's life and if we need to start learning how to really advocate and how to put his and our best foot forward only 3 weeks into his public school experience, then so be it.

We are now up to the task. I have accepted my failure and forgiven myself (mostly), but I'm still stinging from the experience. It felt like an ambush. It felt like a party that everyone else knew about except for me. It hurt. It still hurts. The pain is a very present reminder of how much we have to learn. Of how we need to learn to navigate the system in a way the best benefits Joey. 

Wish us luck-- and best of luck and may all the strength and fortitude be with each and every parent out there who is walking the road of being both a parent and an advocate for you child with special needs.

Monday, September 9, 2013

Happy Post-Surgery, Happy Buddy Walk, Happy 3rd Birthday, Happy Pre-School, Super Joe!!!

August was an incredible, but insane and exhausting month. I've had this post in my head for almost a month now. Joey had his tonsils and adenoids out on August 8th and things have not slowed down for a single second. It was like August was a month in super fast forward. At one point, someone asked me why didn't try to schedule Joey's surgery at a better time- my answer was that in this life and in our situation, we no longer do that. We do his things when he needs them done regardless of what is going on around us and then we forge ahead with abandon and pray for the best.

If we tried to plan every event or ever trip around when Super Joe might be sick or might have a procedure-- the plain truth is that we might not ever plan a single thing. Tom and I have made a conscientious decision to not live like that. We do our best and if Joey or even Tommy for that matter is sick, we reschedule or come home early.

That being said, August WAS INSANE!!! Like mind-boggling, incredibly stressful, crazy moments of bliss, constantly on the go, not a second to take a breath, insane. Whew! This will be a post that should have spanned over four weeks, but here you go- it's all in here in one giant August wrap up. Happy Fall, ya'll!

G-pa and Grammy came in from Dayton to walk with us.

Post-Surgery: Joey Turned a Corner

So. Tonsils and adenoids. Very interesting. About 1/3 of the people I spoke to had children who had no complications and no problems with having their tonsils and adenoids removed. The other 2/3 I spoke to had hydration problems, sleeping problems and feeding issues. We were in the latter group. We were told it would take him about 10-14 days to get through the worst part and then 2-3 weeks total to be back to normal. Joey was right on this schedule. He learned new words from his hospitalization that include "No" and "Ouchie." He would literally lie on the floor clutching his throat saying ouchie. It was one of the saddest things I have ever seen and I would have been sadder had I not been so completely sleep-deprived. He slept ok the first couple of nights, but then for the next 10 days he would literally wake up at midnight, 2 am, 4 am and 6 am and we would have to rock him and hold him. He was eating and drinking a bare minimum, but because he had a couple wet diapers and tears, we knew he wasn't completely dehydrated. I said to Tom that it felt like we had a newborn again, only this one was in pain and weighs 30 pounds (although thanks to 2 weeks of very little food he is down to a slim 29 pounds!).

Saddest pose ever.

In the meantime, there was the lingering smell of what my mom said was the scent of gangrene. We were warned that he would have bad breath and that brushing his teeth would not help. No one told us that his mouth and breath and anywhere near him would literally smell like death. Rotting tissue. Wow! The first night it set in we went into his room and thought he had a poopy diaper-- nope.  That would just be the gangrenous odor of cauterized flesh in his mouth. On one of the first days I had the misfortune of looking in his mouth while he was screaming at us for trying to give him his medicine and I almost passed out. It looked like gray and green ill-colored mountains of dead flesh were lining his throat. YIKES!!!

The recovery was bad. It was really bad. It took two of us to try and get some of the ibuprofen in him-- EVERY 4-6 HOURS!!!  Poor Tommy was traumatized by watching Tom hold Joey and me try to force feed him his medicine. It was a vicious cycle. He didn't want to take his medicine because his throat hurt, which meant he also didn't want to eat or drink, which made his throat hurt even more and so on and so on. I tried it all. Pudding, ice cream, popsicles, freezing the medicine into other forms, applesauce, yogurt, milkshakes. Super Joe was just not going to eat or drink until he was desperate.

I'm probably suffering from blocking out the whole heart surgery, but those 9 days in the hospital after his heart surgery were honestly easier than trying to help him recover the two weeks after his tonsils and adenoids were removed. My theory is that after heart surgery, there were nurses and doctors making sure he was okay, but after this latest surgery it was just us trying to do our best at home. Oh, and apparently he had HUGE adenoids, which is why he kept rubbing his little nose like crazy saying ouchie and dripping tons of mucus for 10 days.

Not even his favorite fudgsicle could tempt him.

Oh my.  We made it. In the midst of all this I looked at Tom and said, "Am I being delusional by believing that somehow this will help Joey not to be so sick this winter?" His response? "Probably. Don't get your hopes up." He's our resident honey badger. I still have high hopes for this year. I'm praying for a healthy and productive year.

Thank you to all the mamas who left comments, or emailed or sent Facebook messages with helpful information. I printed it all out and took it with me to the hospital and it helped us be much, much more prepared!

The 2013 Northeast Ohio Buddy Walk

Joey's surgery was on the 8th and Buddy Walk was on the 17th. He was not quite himself, but he was a trooper for the entire day. 

Over this one day, every year, we gather to celebrate awareness, to celebrate community and to raise money for our local Down syndrome advocacy and programming organization-- The Up Side of Downs. This was my third year on the committee and my role has grown to being in charge of obtaining food donations for the walk. We had 3,000 hot dogs, 500 cups of Menchie's frozen yogurt, two huge carafes of Starbucks, Eat 'n Go cookies, gluten-free cake balls, airline nuts, juice boxes, water, over 600 baked goods from Main Street Muffins and more! It was all gone by the time the walk was completed. This had to be the largest crowd we have ever had attend. Somewhere between 4,000 and 5,000 families, individuals, teachers, therapists, friends, loved ones and others who all come together and walk to raise awareness and money for individuals with Down syndrome in Northeast Ohio. 

At 6:00 am, my mom and I met Nat at Starbucks where they loaded up our car with two huge carafes of hot coffee and then we headed to Progressive field where we set up the food and beverages for all the people attending the walk. 

Every year we have a team we put together and ever year there are new team members as well as veterans. Some years people can't make it and I always tell them-- don't worry!!! There is always next year! This year's group was incredible.  All the friends and family who either donated or walked- it was incredibly overwhelming and we are so grateful for helping us to improve the lives of individuals with Down syndrome in our community. 

The Stand Up for Downs crew! Tagline: You should totally donate!

Our goal for Joey was to be able to walk across home plate this year at the Buddy Walk, but we aren't quite there. That being said, he tried and with some help was able to cross home plate with a little help-- a few of us cried- it was the best part of the day as a proud mama.


The Big Bottle of Wine and Rubber City Roller Girls at Retro Dog

The night of the walk we had a major fundraising event to cap off the weekend. Our dear friends, Jon and Mark had worked with Susan at Regency Wine Sellers & Bar to sell chances at winning an incredible 18L bottle of wine, which is called a Melchior. Between all of their incredible efforts, they managed to raise almost $2,000.00 for the Up Side of Downs 2013 Buddy Walk!

We all gathered to celebrate and draw the winning name! The couple who won were not there that night, but where thrilled to receive the call. The rest of us spent the evening enjoying the fruits of a summer of fundraising and celebrating the success of this year's walk. It is so hard to express our gratitude and sincere thanks for the efforts of our families and friends who embrace and work so hard to help make the Buddy Walk a success. We try our best and we are so very grateful for your support and love and your dedication to continuing to making the world a better place for people with Down syndrome.



The party didn't stop at Regency Wine Bar-- we rolled right into Sunday afternoon where Jon and Mark had once again worked their magic with Lisa of Retro Dog and helped organize a fundraiser with the magical Rubber City Roller Girls! We cannot wait to take the kids to see one of their "bouts" this winter!!! 

If you haven't visited Regency or Retro Dog- we hope you will visit both and support these locally owned businesses and if you think about it-- please tell them thanks for supporting our community. 

Joey Turned 3!

There is so much to say about Joey turning three. To start, Tommy and I cleaned out the play room before his birthday and put all of the toys we deemed to be too "babyish" for Joey in the attic. Part of Joey's growth and progress is based on us treating him like a big boy and placing big boy expectations on him. We expect him to learn how to act while eating at the dinner table. How to behave during church. We are working on him saying or signing please and thank you. One of our dear friends, who has a 30-year-old son with Down syndrome told me early on that it is important to try and continue to introduce age appropriate toys, books and shows and to promote acting your age. I couldn't agree more. When people remark on our "baby" we kindly, but firmly say, "Oh no. He's not a baby, he's a big boy." The point of our response has very little to do with the person saying it and everything to do with the fact that we know Joey understands way more than he can communicate and so we try to communicate the message we want to reinforce.

We had thought that when Joey turned 3, he would be able to walk. This hasn't happened, yet. That being said, he works so very, very hard at it and his therapy and his exercises every single day. This little man might not be walking, but he is crawling at the speed of light, he bear crawls on hard surfaces and as of today he is an official dangerous climber! I mean DANGEROUS! Super Joe climbed up on a kitchen chair and then proceeded to climb up on the kitchen table. I was standing right next to him, but was curious as to how far he would make it. Watch out world! When Joey starts walking I have a feeling he won't be walking for long and will soon be running!

Why is he 3-years-old and not able to walk, you ask? We ask the same question. I had a great conversation with his PT at school and she told me that because Joey has such severe hypotonia (ie- low muscle tone), walking is just that much more difficult for him. For him to move his legs takes an incredible amount of effort. I have also read that many individuals who have Down syndrome and have some speech difficulties, do so because of the low muscle tone in their facial muscles. Can you imagine? You want so badly to say something, but your own muscles are fighting against it? You want to express yourself, but it's just that much harder. Or, can you imagine wanting to run after your classmates or your siblings, but you just can't make your legs work quite the right way. 

I can't imagine. I don't know what it is like for Joey to experience these kinds of frustrations, but what I do know is that he works tirelessly and with incredible devotion and tenacity and he will achieve his goals and his hard work will pay off. Before we know, Super Joe will be flying.

We celebrated his 3rd birthday at Retro Dog and it was awesome! Both the kids and adults tried all kinds of different hot dogs, hamburgers, fresh-brewed Thirsty Dog Root Beer and regular Beer and we finished with an incredible cake by Marty Draime. 

Joey and Nat. Look at that kiss!!!

What will this year bring for Joey? If I could have any say in it I would wish that he has a year full of joy and love and that it is a year free of surgery and sickness. Those are my birthday wishes for you, precious Joe.

Tommy, Joey and the Sovacool girls (well-- half of them!).

Two trips to Dayton- Grammy's Birthday and My 20-Year High School Reunion

The rest of the month was filled with a trip to Dayton to celebrate my mom's birthday with a wine tasting dinner and lunch with the kids. Tommy had a blast and kept asking when we would be going back to Dayton- luckily we went back the next weekend, so his wish came true.

The next weekend we headed back down to celebrate my 20th high school reunion. The weekend started with a football game at my old high school. We sat in the middle school section, which seemed slightly less scary than the high school section (how can high school still be scary 20 years later???). Tom's assessment of the middle school section was that it was a "swirling mess of pre-teen hormones and face paint." Spot on. But it was still fun and the boys had a blast with their cousins and Aunt Lu Lu and Grammy and G-Pa.

Um, wow! Four skydivers flew in and brought the game ball. 

Saturday afternoon we took the boys to the reunion picnic and it was such a neat afternoon. The best part was meeting everyone's beautiful kids and catching up. Joey slept for half of it and we should have known that this was a clue that something was going on, but we had no idea he was getting sick.

So much had changed, and so much had not. What was most moving was realizing what a great school we all had the good fortune to attend and what neat and unique and kind and beautiful people we went to school with.

Matt, Joey and Matt's son.
The organizers and their families did a bang up job of organizing the weekend- down to the pinatas divided into age groups at the picnic to the map of the United State showing where everyone had come in from. It was a magical and moving weekend and I am so grateful to the years I spent in school with these friends.

Saturday night was full of catching up with more old friends, reminiscing and spending time in the photo booth trying to photo bomb each other. We all told each other that we had not changed a bit and we all meant it in the nicest way possible.

We do have one nationally known actress who went to middle school and graduated with our class. We were cheerleaders together for almost six years throughout middle and high school and she is still the beautiful, kind and sweet-- Sherri Saum.

Lena Adams

Sherri is currently starring in the ABC Family television show "The Fosters", which is produced by Jennifer Lopez. She came to both the 10 year and 20 year reunion and is so beautiful and sweet in person. It was such a treat to see her. Her new show is awesome-- they are starting to film ten more episodes, so more to come!

Thank you, class of 1993, Firebirds! What a weekend- full of memories both old and new. Cheers!
Kettering Fairmont High School- Class of 1993

Joey Starts Pre-School- at Two Schools and Tommy Starts Pre-K

Tommy is back at It's All About Kids for Pre-K before he starts Kindergarten next year. He loves his class so far and invited each of them to his birthday party the very first day of school. He and Joey have both been tired and a little grouchy since the start of school- I think we all have, come to think of it! They are thrilled to go to school, but the early mornings and full days are taking a bit of getting used to after our summer fun.

Joey's schedule is a little more complicated. He attends an Early Learning Program through the Akron Public School on Monday, Tuesday and Wednesday for a couple of hours in the morning. He has only had two days of school there so far, but he seems to be adjusting to the new environment pretty well. The first day of school I picked him up and told him to tell his teacher "thank you." Joey had another plan- he pointed at me and said very clearly and very loudly- "No!" Our little man is developing his own opinion and personality. On Day Two he did a tiny little thank you sign to his teacher. We are getting there.

The other two days of the week, Thursday and Friday- he attends It's All About Kids with Tommy, but in a different classroom. I didn't realize how much this would mean to the boys until we all went to Joey's new school for orientation the week before it started. It was a great orientation and we got to visit Joey's classroom and attend a book fair and have the boys fingerprinted and photographed. As we walked to the car, Tommy looked at me and said, "I don't want Joey to go to this dumb school."

"Tommy! We don't use that word." I tried to address the delivery of his message instead of the message itself because I was trying to figure out the right thing to say and I needed to buy myself some time.

It came to me. "Tommy, this school is going to help Joey learn to walk and talk and do all kinds of things. It's going to be a really good school for him and half of the week he will be here and the other half he will be with you again like last year."

That seemed to work, but it spoke a lot to me as to how close these two boys are. They are definitely happier on the days they go to school together. The school world is one we will continue to explore and try to manage as best as possible over the coming years. I have already spoken to two private schools that Tommy will visit about the possibility of Joey attending those and was told by both that at this time they cannot make any promises about their ability to have Joey attend their schools because they don't know how well he will function at that time. The doors are definitely not closed-- we will just have to wait and see what will be best for Joey, what will be best for Tommy and what will work best for our family as a whole. 

We go into the world of having a child with special needs attend school with open hearts and minds and we pray for the best for Joey. We also pray for the family of another special needs blogger mom and my heart breaks when we read about how some people are pushed to the edge when trying to make it all work and make the puzzle pieces fit. Please say a prayer for Issy and her family and for all the kids with special needs and their teachers and therapists and families as we all start this new school year.

Hand/Foot/Mouth Disease, Huh???

As we left the madness and fun of August, we headed into September last week with new schedules and routines to learn. 

On Friday morning, the new plans and schedules all came to a screeching halt. Joey woke up with bumps and blisters and sores all over. His little hands were swollen with tiny red dots. He had them on his torso, all over his feet and they were starting to spread to his face and mouth. What in the world? We thought it might be strep or even chicken pox and headed to the doctor as fast as we could get in.

Once we got in they sent us straight to the rash room. Ever been to the rash room? We average a visit about once every 1-2 months, so we know right where to go. It only took the doctor a couple of minutes to examine Joey and determine that our little man had Hand/Foot/Mouth Disease. 

"Is that a real thing?" my husband asked when I called him. Um, apparently. I finally checked Tommy head to toe and found that he too had H/F/M as he had the same sores on the bottoms of his feet. Luckily for Tommy, he had a much more mild case, which is what usually happens to Super Joe. Sickness just hits him hard.

The nice thing about H/F/M is that by the time you realize the kids have it, it is almost over. All of a sudden the boys' low fevers the weekend before and their sleepiness and tummy problems made a lot more sense. I thought it was a case of the Summer's End Blues, but turns out it was real.

Okay! Whew! That was a lot to get through, but it is now September and we are all caught up.

Have a very happy week and try to spread some sunshine out there. When people act or say things in a way you don't understand-- try to give them the benefit of the doubt and see how much easier your day goes.