Tuesday, October 1, 2013

col*lab*o*rate: to work jointly with others ~ Happy Down Syndrome Awareness Month!

To collaborate. Merriam-Webster defines it as working with another person or group in order to achieve or to do something.

Sometimes it's hard to work with others, isn't it? Sometimes you know what you want and you don't even want to hear what someone else wants or why what you want isn't possible or isn't what you should really want.

That's where collaborating comes in. Coming together to jointly achieve a goal.

After an unexpected meeting occurred to revise and reduce Joey's services as laid out in his IEP, I was angry (to read about how angry I was, visit this post). I was hurt. I was scared. I felt so ridiculously alone. I was confused. It took me a good four days to react and to figure out that we needed to come up with a new plan to address what had happened.

That being said, what started out as shock, anger, confusion and dismay has turned into a major learning lesson as we begin our journey navigating the world of IEP's (Individualized Education Plans). 

Dare I say we are lucky? Fortunate to have had something like this happen so early into Joey's education? I think so. One of my friends said the silver lining in this was just that- that we ran into a speed bump early on and that it forced us to figure out some very important things.

We learned so much by going through this that the next time something comes up, we will be much more prepared. We will never be fully prepared, but we will at least have a plan and we at least now have realized just how many amazing resources we have and how many people we know who work in schools or who have experience and advice for the road ahead.

We also learned what it means to get the key players into a room together and collaborate. To work together to problem solve and troubleshoot and break down the existing challenges and goals into smaller, more manageable ones.

What Exactly Did We Learn?

1. We learned that there are advocates and people who will attend IEP meetings with you. Some local resources include Summit DD and The Arc of Summit and Portage County. After calling one of my Mommy Mentors (ie- moms who have been there and done that), I ended up calling The Arc and an advocate immediately agreed to attend our IEP meeting. 

2. We learned that we can request an IEP meeting at any time during the school year. We learned that we can take the IEP draft home, read, re-read and even take it to our private therapists for them to review. We learned that The Thomas Center for Down Syndrome (which we are taking Joey to in January at Cincinnati Children's Hospital) will actually review their patients' IEP's. 

3. We learned that we have friends and acquaintances who are teachers, therapists, counselors, teacher aides and parents who have been maneuvering the IEP process for many years. We learned that if we send out an SOS-- there are people there to help.

4. We learned that most educators, therapists, administrators and aides want your child to succeed. We learned that sometimes being in this process every single day might mean that you aren't as aware of the effect it has on families and children. 

5. I learned that I do not ever want Joey to attend another IEP meeting. I learned that I do not ever want him to hear a therapist or educator say he has a "zero percent chance of meeting a goal" ever again. We know that he can understand much more than we realize and I am committed to making sure he does not attend another IEP meeting until he is at an age where he can express his feelings.

6. We learned that there are many, many families who have struggled with their own ambushes whether at school or work or in a relationship and that they too experienced similar feelings of being uncomfortable and upset. We learned that it is our right to stop a meeting when we feel that uncomfortable.

7. We have asked that in the future we have advance notice so that both Tom and I can attend the meeting together with an advocate and so we can get child care for Tommy and Joey.

8. We learned that the power of pictures is incredible. We brought pictures of what we wanted to do for Joey's cubby and we also brought a photo of him standing at the toilet. The goals that were removed were hard to remove when it was so obvious that he can and will reach those goals. 

Joey- trying to climb up to the sink at It's All About Kids.

So, How Did the Meeting Go?

The meeting went really, really well. We brought our advocate and while she did not have to say a single word other than to introduce herself, we felt much more calm just having her sit there with us. 

We discussed multiple things at the meeting. We asked that in the future we be given advance notice because both Tom and I are totally invested in Joey's success and we BOTH want to be present for every decision made involving his schooling.

We asked that his Physical Therapy be returned to 145 minutes, which it was. His PT assured us that he is getting even more than that, but one thing we have also learned is that unless it is in the IEP, it is not required. His PT had some excellent ideas and insight into what is motivating Joey and how he is doing.

That was probably the best part of the meeting was just getting this group together and learning about how Joey is doing and what he does at school.

The main things we discussed were the two Occupational Therapy goals that were removed (ie- him hanging up his backpack in his cubby and him sitting on the potty without resisting for 45 seconds).

We assured the team that these are things that we will follow through with and work on with him both at his public and private pre-school as well as at home.

Once the team started discussing the goals and breaking down the various ways to make them achievable (ie- lowering the hook in his cubby, adding his photo in his cubby since he cannot read, yet, letting him sit on the potty with his pants on to start with) the room was energized and the tension disappeared. The two goals were reinstated without resistance and we are working on helping Joey achieve those goals.

This is where the collaboration came in. We all started thinking, talking and working together and it was awesome.

The therapist who had set up the initial "conversation" apologized when I said how shocked I was that it was an organized meeting to change Joey's IEP. 

The glue of the meeting was Joey's teacher who filled in the gaps and was able to tell us about the things he is doing in class and how she thought we could incorporate the two goals into the day. 

After the group meeting, Tom and I stayed at the school for awhile to observe Joey's class and see him in action. We are getting daily sheets from his teacher that show the activities he participates in and what is nice is that Tom drops him off in the morning while I take Tommy to his preschool and then I pick Joey up when he is done at 11am. That gives me the daily opportunity to see his teacher and hear how his day went.

What gives Tom and I both so much relief is that Joey's teacher is truly passionate about teaching children with varying special needs. She is always energetic, excited to see the kids and we are grateful to see how he has started to warm up to her and the new school.

Will this be our last road bump in the schooling process. Nope. I'm sure it won't be. And that's okay. We have learned so much from this one experience that we are looking forward to seeing how we can keep striving to maximize Joey's education and his learning process to help him be his best self.

For all of the wonderful insight, emails, comments and Facebook messages-- we are so very, very grateful-- thank you for your thoughts, ideas and support.

This is going to be a major year for Super Joe! He is truly starting to try and "cruise" on furniture. He is climbing up things we never thought possible. 

We hope you will join us this month as we celebrate Down Syndrome Awareness Month all of October!

Happy October and a very happy belated 5th Birthday to the most amazing big brother of all. Thomas Henry.  Tommy enjoyed a Teenage Mutant Ninja Turtle birthday party this year. Happy number five, Tommy!

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