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.


Friday, July 13, 2018

An Open Letter to Those Who Think Autism is an Educational Issue or a Parenting Issue

To Whom It May Concern,

This year I have been working to make changes to our laws. As they stand, a law from prior to my birth is dictating the type of medical coverage my disabled child receives in turn impacting her, myself and my family in ways I never anticipated. Though I speak up, I am CERTAIN hundreds of thousands of people are suffering the same impact because of ERISA.

Its hard to imagine that the number of children being diagnosed with Autism Spectrum Disorder is rising but the fact of the matter it is and at alarming rates. It is hard to believe but sadly we still don't have a concrete reason as to why this is the case nor a way to stop it. What we do have however is a band of parents willing to put in the work to make a change for our own children and for the future. These parents, together with supportive therapists and teachers on our side are working to create environments that are safe, effective and capable of providing a learning and living experience for children living with autism spectrum disorder.

I have heard a lot in the two years that I have had a child diagnosed on the spectrum. I have heard so much that my head spins and the emotional exhaustion that surrounds my own life is overwhelming at times. Still, I want to speak, I want to share because in doing so perhaps parents won't feel alone, parents will feel empowered, teachers can better understand and onlookers will learn empathy. In a perfect world, I may also be a driving force in helping make sure that all children with this medical diagnosis are given the correct "medicines" to treat their disease.

Today, I woke to my husband gone from the room, as I rubbed my eyes I could hear shuffling in my kitchen. Today, she didn't get out. Our doors (and windows) all armed with alarms had yet to signal complete escape but today, when my husband got down here, he found our daughter making a break for it. She had already pulled her small body up onto the counter, hovered precariously over a tile floor and scaled a corner cabinet to the top shelf to get her M&M's which I had hidden from yesterday's therapy session. She didn't fall. She wasn't injured. She didn't get away. This time. Though he was embarrassed running in his skivvy's through the house of sleeping children (and friends) it was nothing in comparison to what could have happened. She could have gotten away. We could have been a parent highlighted on the nightly news with a child, disabled, unable to give their name and address roaming the street and we live not far from a main road. She could have fallen, from the counter, to the tile. She could have fallen from higher too. Would she have been injured? We will never know. This time.

As I pulled myself together I made my way downstairs to find her playing with her favorite small toys. I began to talk about the day. It was water day today at school and I carried her swimsuit and towel with me indicating that unlike most days at summer school, today would be special. They would see firemen and firetrucks and play in sprinklers with friends. She eagerly pulled her swimsuit bottoms on and then her top. As quickly as she dressed she made a B-Line for the backdoor insisting that it was time for a swim. She loves swimming. She stood, face pressed against the gate to our little toddler pool and screamed. When it wouldn't open, she came to me, hit, pinched and screamed. She yearned for attention. She yearned for me to give in and as we implemented yesterday, I was ignoring as her razor sharp nails dug into my skin causing tears to well in my already burning eyes. She screamed, she kicked, she bit the fence and then, as quickly as it came about, it ended. She allowed me to sunscreen her. She allowed me to tell her once again about the fun at school and then it happened. She stripped. Down to her diaper because if she had the words I am certain she would have told me to "F Off, you don't wear a bathing suit to school". You see, her brain, it doesn't function like a typical person. Her brain can't flip that switch and so much of her life is black or white. We are working to help her see grey and color but for now, its black or white. As I wrestled her tiny body trying to put her into her suit as per the instructions from school, I broke down. It wasn't yet 8 a.m. and I felt like the day should be nearing an end. As I shook, the silent tears flowing from my eyes, my 9 year old gently sat down, put her arm around me and told me "I see you trying.". I am trying and sadly not succeeding nearly as much as I hope to because you see, its not parenting, its her brain.

After she left I wanted to get the house in order. We had a week of busy mornings and therapy afternoons and I knew this afternoon would be the same. As I wandered into the bathroom, I bent to empty the trash and there it was, my son's hermit crab. I had noticed Seraphina bent over in the bathroom, slamming the door. I now think I know why. As I held my breath and told my son, his eyes welled up and within a few moments I was calling my closest of close explaining that I really didn't know how I would do this, forever. Honestly, I still don't. Day by day I suppose.

In any case, this is a long introduction to why I am writing. Truth is, it needs to be because the days AND nights are long. For a parent who has a child on the spectrum, though each of our paths is different, we each have struggles that impact us, day and night. On February 14, 2018 my application for an exception for medical coverage for my daughters diagnosis from my husbands company was denied. What does medical coverage include for her? It means that the American Academy of Pediatrics recommends that children, like Seraphina receive 25-40 hours of ABA (applied behavioral analysis) therapy each week. Yes, similar to a full time job. It also means that she will learn how to go out in public, converse with her peers and assimilate to the best of her ability into society. Our insurance? Denies it. 100%. In fact, they don't even allow her to visit the neuro-developmental pediatrician year. While I work to piece together an effective program, her peers with adequate insurance are able to receive these therapies that are recommended. I sit, doing my best to implement what her school has set up into my home and daily life while parenting five additional children. Our insurance feels that autism is an academic issue. I can't disagree.It is but when she steps off the bus, her autism hat does not fall off and some compliant hat is pulled on. Seraphina takes longer to learn most things, her autism paired with her additional 9 diagnosis' impact her daily learning from how to make a bed, use the toilet or go to school but it doesn't stop there. Her disabilities change everything. While academics ARE impacted, our entire lives have changed due to a diagnosis so severe it deems her disabled.  At night, I lay awake, listening for the door or window chimes and often scoop her not so small body into my arms and hold her for then, I know she is safe. In the morning, I often take moments to stop and breathe as she fights, screams and cries for help as she is overstimulated by even the simplest of tasks. A trip to the grocery store? Its no longer simple and as of late, I am afraid to leave her with her oldest sister, though she is certified in babysitting, first aid and CPR, Seraphina is too much of a risk to herself and others. I have returned to my other children scratched, bruised and crying because the physical and emotional pain of watching their sister and that my friends is too much.

Each day we wake, with hope. All of us. For me, I hope that she is happy and safe. I hope that she's able to have friends, isn't ostracized due to her disability and that she find success in the journey she is to walk. I don't know my husbands hopes for her but I know he hopes that I can handle what comes my way for frequently he is away, out of town and I juggle on my own. Knowing that I can handle it takes some of the burden off him. Each month as a family, we work, with an amazing team and still, we are here, unable to change the chemical make up in her brain, the pain that simply noise or a breeze can cause her to feel. Every day I wonder, how a company can deny that her disability isn't just an academic issue but a medical disease that needs treatment. Would they deny a diabetic insulin? A child with cancer, chemotherapy?

I have also heard its a parenting issue. For those who know us personally, its not. I am a strong willed parent who has each of her children's best interest in mind. I try to juggle each of their needs, likes and wants while keeping the house and balancing a delicate Seraphina.

As I sit here writing, its now the mid afternoon, we are waiting for a therapist, shes late and my other four children are also waiting, patiently as they have for the last two years as therapists arrive late, their sister melts down and I use every ounce of patience during her therapy session. They wait and miss out. There are no play dates during this time. We cannot go anywhere and still, they sit, they try to understand and they are brave. They too have hope that one day their outings won't be cut short due to their sister. They hope that one day they won't have to be her primary care giver because of these therapies and so they wait, without hesitation, without frustration and without anger.

To those of you who think autism is "just" an educational issue, I urge you to look into my eyes, as I pray fearfully for her healing. I ask you to talk to my children who have lost hundreds of hours of their childhood for their sister as we work to help her assimilate into our family life. I wish that this disability was just academic, how "easy" that would be but instead its a disease that infiltrates her body and our home.

I promise to my child, to my children, to my friends that I won't give up. I will work tirelessly to get laws changed, to give our kids the best chance and to hopefully one day educate others not just to be aware but to understand, to accept and to show empathy.




Wednesday, July 4, 2018

#SimpleSummer

Every summer I come up with grandiose ideas that include trips to find all the local cupcake shops, visit all new beaches and fill the days with so much summer fun that I am wiped out and the kids are melting down. I always want bigger and better and typically by August, I am letting myself down and the kids are suffering from my stress level which is typically through the roof because I am exhausted so this summer I am introducing #SimpleSummer and I encourage you to join the movement.

First, summer is good for rest, to recharge, sure for some that means your kiddo has extra schooling (like one of mine) or it means that you have a family vacation planned (or two) but on those other days when we fill our year with so many things why not give ourselves time to reset. Sometimes when we seek to find the "big" the "bold" the "beyond" we miss the beautiful right in front of our noses. This is a challenge for me. I am competitive, I want my kids to look back on the 18 summers they have and say "I had the best childhood" because in hindsight, I feel like I did...and I want the same for them.

This year though, I am setting the pause button. I am choosing to slow down, to see joy in the simple moments and celebrate each day as a gift. A gift of family, a gift of time together and a gift to learn more, do less and understand the world around us.

So a few ideas that I have implemented....

1. Family Chores: Yup, I said it...family chores. There is no time like the present to teach your kiddos how to be part of a family, how to run a household and how to be a part of a team. Our family has a silly little nickname and I use it to remind them how when we work together it leaves time for me to be present for them. Each day is a different chore.

  • Monday-Bathrooms
  • Tuesday-Dusting
  • Wednesday- Floors
  • Thursday-Reorganize, Sort and Reset
  • Friday-Bathrooms
  • Saturday-Bed Linens
  • Sunday- DAY OF REST
Once chores are complete we have a day ahead of us for small outings, opportunities and experiences. Of course I have the ability to put the chores on hold to avoid excessive heat or excuse a child for a sleep over or friend over BUT I have told them I will need them to be part of the team when they return choosing to do something to help the family. Yup, two days in and no complaints...did I mention no electronics prior to this getting done? Yes, that includes the big girl's phone. All electronics are collected in mom's room at 9 p.m. the night before (again at my discretion).

2. Read: We all hear about the summer lag or the summer fall back and as a child of a teacher I know its true. Reading won't be the cure all but its opportunity to try new books, read new materials and understand new things. Each day I want to read too so why not add reading time it lets me get some down time and I need that myself. So this year we have joined the library reading programs, found some books and visited...almost daily.

3. Simple Adventure: Here is the fun part. Each day I will try to find a simple outing. Today, its the Fourth of July so we'll visit a friend but yesterday we had a blast...we headed to a Gorge before it got too hot and though I said "wading" I went home with four very wet but very happy children. Last stop of the day? A quaint coffee shop where each kiddo got to choose a treat. The favorite? Lavender Lemonade. Felicity was hold that stuff over her siblings for bites of their chocolate croissants.

This girl is typically not one to jump into streams and rivers but on these adventures we see a new side of her. First to cross the river.
My less than adventurous two seemed to be in on the fun, both choosing to try new things, like wading across the river or sitting down in the stream. It was great to watch them explore and the visit ended with a wild splash fest and all ended up soaked and full of laughter. 

4. Impromptu Stops: I am a planner. I hate when things vary and recently I realized that is why I struggle so much with ASD. I want to know what will happen and when and I want to understand why. Impromptu, going off the beaten path are not my things but this summer, I am challenging myself to try new things and do just that. Yesterday we were going to be early for Rugby Practice. With just a little time and heat that was oppressive I decided a stop at a local ice cream shop was in the cards. We even included little sis who was at school earlier in the day. Here the kiddos were able to choose whatever they wanted and though two stuck to typical soft serve, two tried new things and had the Lemon Bar been gluten free I would have been enticed to try it myself. As we sat on the patio outside the famed little shop, we listened to the bubbling fountain, admired the beautiful flowers and just slowed down. This summer I promise myself to take time to do more impromptu things, even if it is something that is a challenge for me because in the end I think it will teach my kiddos more.What the kiddos don't know is I have a plan with the ice cream shops..to visit all kinds, try all kind and journal about it so one day they will remember the summer of ice cream and that can't be half bad.

5. This summer, I also want my children to journal. No joke. It doesn't have to be one of those long drawn out journals that they turn into school for credit but instead, for them, to remind them of the good things. I began my own "bullet" journal yesterday highlighting the simple joys we have found. 

6. Try New Things: All who know me know I am obsessive about going, doing and getting done. I have anxiety when my house isn't perfect and though I NEVER judge my friends homes I get stressed when my own home isn't clean and orderly. This summer, MY new thing is to let go. I am asking each of my kids to pick a "new thing" for each of them. It could be to be more forgiving or to try a new sport, it can be something that means something to them but for me, this summer, I am not going to strive for perfection. I am not going to obsess over a perfect house because honestly if my friends who are coming over are coming just for that, are they truly friends? My hope is my kids will be happier and I will too...once I get over the anxiety of the mess.

So this summer, I am challenging you, my friends to post on Facebook, Instagram and Twitter. I want you to all use the #SimpleSummer and join me in finding the good in the simplicity. 

Square Hole In Round Peg

I don't fit. Yup, its me. Not my beautiful child with autism spectrum disorder. Why don't I fit? Its simple. I want everyo...