Monday, July 16, 2018

Team Up!

Its that time of year when parents begin to think about for school. Some are eager with thoughts of firsts and beginnings while others have been on a journey they never anticipated and certainly never dreamed they would be traveling. I share that journey with so many. While I prepare for the exciting "firsts" of my typical children, I lie awake at night crying, wondering and hoping that I can give my youngest child, my disabled daughter what she needs this year and in the coming years academically, socially, emotionally and even spiritually. I know I cannot do it alone. A little over two years ago, a woman from our school district walked into my home to help me with the transition from early intervention to the local schools. I sat rigid with anxiety and anticipation of everything that they wouldn't and couldn't do for my child. As she spoke, the safety of the bubble I had protected my youngest child in seemed to burst as the feelings overflowed as tears trickled down my cheek still stinging fresh from the recent confirmed diagnosis of autism.

This little girl with few words would be sent on a bus, in a car seat to a school district that I had been told to get out of. I remember the day of her diagnosis and armed with a seasoned mama by my side I attended a support group but it didn't begin as I intended and as my husband will remind me all the time, anything worth doing isn't easy. I sat reeling with reams of paperwork on my table trying to discern the best possible path for my child. The coming year was going to shape me and change me in a way I never knew existed and though I can share my story and my journey, I cannot tell you what you will encounter or what you will feel but I can tell you what I did wrong and how I made it right.

I still remember that meeting. I had tea made, I felt like if I continued to carry on as I had with my other kids that somehow I would "fix" this disability my daughter was diagnosed with. I thought perhaps if I sucked up to this special education guru that she would fall in love with me and my child and we would have the world. I also remember feeling anxious, angry and overwhelmed. How could I as her mother be the best advocate?

When I was first talking with others who were ahead of me on this journey I was given a ton of advice and honestly, most of it was good but what I have realized is each of our journey's is our own. We each have differently abled children with unique needs and that is in fact why we have an individualized education plan. I was instructed by many to say as little as possible to wait for the school to make their first move, to be ready for a fight. I listened. At first, I held my cards close. I didn't let them see my hand or what I had planned and that first year my child was in school was hell.

I hated the district. I wanted to fight and at times, I did. I found everything and anything they did wrong and held them accountable with curt emails that I had been instructed to send any time they were out of compliance with her IEP and the disdain I had for the first case manager I had was apparent in each and every meeting we attended. As my child went to school it was apparent to her that I didn't trust and though she had limited receptive language she didn't trust, she wasn't happy and we were all overwhelmed. I was outspoken about our struggles, compared what my child received with others and wanted to make sure MY child had the best and then, I cracked. There were things that weren't right. There were things that were terribly wrong. Sadly though it was because I was not following the path that was in my heart. Yes, I needed to ask for a change and mid-year it happened. I was given a new case manager and it gave me a chance to begin again.

That day I sent an email to our new case manager. Yup, I was that mom prior to the email I sent. I shared that I understood that parents were part of the "team" and I wanted to "team up". Since that day, its been different.

As we near school, I am hearing of so many families lawyering up, grabbing advocates and getting ready to go in with a fight. I am here to tell you, I was that mom too. I was so fearful of what I felt my child wouldn't get, I forgot to look at what she did.

Here are a few recommendations I have for going into your first IEP and building a team to give your child the best education and save yourself a lot of anxiety.

First, send that email. There is a good chance that the person assigned to your case is a social worked, psychologist, learning consultant and often a parent. Let them know you want to be a team. Choose to build a bridge and remind them that you are here with information they need to give your child the support they need.

Second, document. Yes, I know its sad to say but do it. When you send an email, request a response or at least a quick message of "received" so that you are aware you are on the same page or at least they know where you stand. Sometimes personnel and staff change and if you have the paperwork to support the program you and your team have developed, it will be easier to continue in a smooth manner.

Third, bring a photo. I have found MOST people in education have children or at least like them...A LOT! I always share my child's photo. I let them know that though they are talking about what they can do for me within budgetary constraints that this is my daughter and we're not talking about extra curricular activities or fun outings, we are building her future. Together.

Fourth, send an email letting them know your expectations. I do this a week or so in advance and also request my IEP sent to me prior to the meeting. I like to have it a few days so if I need to ask for a change, I can. Sometimes I even get calls now from my case manager to follow up. I don't think she sees me as adversarial anymore but instead as her counterpart at home.

Fifth, choose what is reasonable. Yes, shoot for the moon. We all would like 40 hours of ABA but lets be reasonable. You are NOT to the only parent with the only disabled kiddo in the school. Remember that the speech therapist cannot see your child 6 hours a day but perhaps they can see your child more than you first thought to ask.

Sixth, get to know the teacher, paraprofessionals and the staff at the school. I always write a note that has everything new about my child before a new teacher gets her in class. I include ways to help her calm, things she is currently into, small facts that will help them and in turn help my child to assimilate into the class.

Seventh, breathe. This is a working document that can be changed. Yes, you are promised one IEP a year but don't be afraid to ask to meet 8-10 weeks into the year or set up an informal meeting with your case manager. Its even okay to ask the teacher to schedule a few extra "conferences" so you can work together to implement a school/home coalition that will help develop your child to potential.

Finally, choose what is right for you at that time. Years ago we lost a baby. I was distraught and unsure I could move forward but my husband gave me the best advice he has ever shared. "Take it one day at a time, if that is too much, one hour, still too much? One minute. Still overwhelmed? One second. Can't do that? Just breathe.". We did not choose this journey, we were drafted onto the team but I will tell you we, as parents are these kiddos 1st pick for helping them create their best lives.

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