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Showing posts from 2017

What Do YOU Do to Help Me During A Meltdown?

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We have all been there, we enter a store and see or hear a child, sometimes not so small lashing out. It can be verbal, it can be continuous screams and instantly those of us with soft hearts are drawn to do something. I have always been that way but since having our sweet Serrie, I am even more aware that the struggle is real.

Twice in the last month, my sweet girl has been overwhelmed on outings to stores. One thing I loved as a parent was taking my kiddos to Target, talking as we whizzed up and down aisles exploring all the sights, sounds and smells. Since Seraphina's diagnosis, those fun trips have become trips filled with trepidation and sometimes even fear.

Friends have begun to open up with questions for me, and I welcome them. I will say, this is a birds eye view, from one bird. I am one person sharing our journey. It by no means will cover all children on the spectrum but may give you some insight on how to help others when you see them struggling while out and about.

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We Truly Are The Same

We are all equal. There is no distinction when you take away our body, our souls, I believe were created with a need for kindness, acceptance and love. As we finish up a weekend that was full of food, fellowship and family, I want to take a moment to hit this message home.

It doesn't matter where you were raised, if you have a roof over your head nor how big that roof was, you were created for a reason and my guess it was a good one.

As we enter in the coming weeks, I pray we can all be a little softer, more accepting, more understanding. I pray we can find good in the struggles, that we see greatness in the dark moments and that we begin to learn to understand each other instead of look past each other.

Recently a friend asked me why I feel I have to do things for others? The answer didn't come to me then, partially because it was selfish but now I acknowledge it. I want to live in a world of peace. I want to live in a world of hope. I want people to live in a world where the…

In The Stillness

Last night I heard you wake. I lay quietly in my bed hoping that you would quickly fall back to sleep and allow your little mind to stop racing. As I lay awake staring at the ceiling, one sister began grinding her teeth, the other lay next to me peacefully breathing and you began to script. I listened as you talked about "Peppa" and carried on about what you did and didn't want to do. I wondered. Were you scared? Should I try to wake you? What did you need?

A few moments later I heard the sounds of that little diapered body pitter patter down the hall. You stood in the doorway looking and I called you over. You curled up into my arms and you felt safe. The scripting began again. I tried to quiet your words, to caress your face in hopes that both of us could return to peaceful sleep soon.

I couldn't.

You continued.

I wondered what the scripting meant? You didn't want to play house? You rambled on talking about "Chrissy" whom I assume is an imaginary frie…

Why Reach Out to Reach?

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Imagine trying to breathe as your doctor confirms the diagnosis you knew to be true. Imagine reeling with pain and anxiety as you wonder about the life that your child will have with autism and a host of other diagnosis carefully checked off on a simple white paper you hold in your hand. Instead of a diploma, the key to your future, you are holding one of the biggest road blocks your child will face in their life.

Autism.

Then, imagine going home as if you were running a sprint to call all the best agencies and get the best therapies for your then two year old child. As you make call after call you realize something doesn't add up. Your insurance which is offered through a major company doesn't cover therapy. Any therapy.

The days quickly pass and you realize that state mandated early intervention is coming to an end and you are more scared than you were when you first heard that life changing diagnosis. How are you going to afford the therapies? Harvard says these therapies …

Public Meltdowns and How It Feels

You know that warmth that wells up within you when something bad is happening?

Don't say you don't. It happens to us all. For me, I know I am red and sometimes tears well up within my eyes. Today was one of those days when I am reminded of just how difficult parenting a child with special needs is.

After 14 hours of sleep and a successful trip to Target last week after dance, I decided to strap on my big girl boots and head to the aisles to grab the necessities needed for the week and one pair of feet pajamas for my sweet boy suffering with croup.

I thought it would go well. Honestly.

After a stop in the bathroom with good behaviors I thought I had it in the bag.

I let my dear daughter pick her cart. She wanted the one that you typically need a commercial license to steer and sat up proudly as I buckled her in and began to navigate the ridiculously small aisles and hairpin turns. Up first? Shoes. How this girl loves shoes. Ones with sparkles. Ones that glitter. She loves shoes…

How Do You Measure Success

Its been eating at me since last week when I went into her class party. Inclusion. Its good but as I watched, it was apparent how different my little wonder was. I watched as children raised their hands in response to questions like "do you want juice" and she sat there in her own world, happy with the snacks I brought. There, by her side is the most wonderful human being but I know its only a matter of time before she is gone and once again we are trudging through deep waters alone, not knowing how we will find someone that will come close to replacing her. She is her other mother and in her hands I see growth I cannot achieve.

That day, I went home and while anxious kids readied to trick-or-treat, my child tried to make the most of her day. She did but not in the way one hopes or imagines. Instead, she handed out candy with her grandma and grandpa, welcoming in strangers as they went from door to door begging for candy.  I thought of what she "should" have done a…

Restart. Reset.

The last two months have been overwhelming to say the least and last Saturday it happened. I cracked. With one simple text, I fell apart and realized my trying to please everyone wasn't doing anything positive for me or those around me. Ahh, the trouble with being a people pleaser. So I took a break. I closed my Facebook account and apparently gave a number of people a scare. I stepped back from phone communication and though friends understood it was certainly not like my typical self and I tried to re-evaluate all that is going on in life. My life. My family's life.

Life isn't easy. In fact, often I think life is down right challenging. I have been caught telling other Catholic friends that I am pretty sure life on earth is to be considered our purgatory. I am pretty sure they think I am nuts but I am not sure that I am completely incorrect. Life is a challenge.

It has amazing highs, from simple moments staring off into a sunset to incredible lows when we lose a family m…

A Gift I Never Knew

Once upon a time, I was you. Hurried. In my own little world with all things fitting perfectly into line. Today, that perfection is overtaken by a life full of loud children with different wants and needs. I am even busier than I once was and more hurried than I ever thought I could be but now, I have a gift, one I never requested or expected.

I was given a gift on the day of my daughter's autism diagnosis. It was the realization of how many little moments mean something.

Today, as you rushed past the young man struggling to put his bags in a cart and push them into Walmart, you grabbed your granddaughters hands and muttered angrily how you would have to go in the exit.

I sat in awe.

I am "his" mom.

I saw the signs my child was not developing typically and made that heartbreaking call, asking for help in diagnosing my child.

I read up on the possibilities and visited three physicians before getting the referral that would change my life.

Like you I rushed past. I didn…

Stretched to the Limit...Fundraising Until it's Cheaper to Pay!

I just turned in my son's cub scout wreath sales. I shamelessly had him post on Facebook selling his wares. I had a number of friends offer but after looking at the cost, I couldn't keep pushing it. In fact, I actually shut down. Sure, my friends like my son but $37 dollars worth? When his den will get a measly $8.00?

This was after I hand delivered 4 different items to the schools for our 2nd Annual Tricky Tray and planned to buy tickets.

Then there was the inquiry at church to bring a basket for their Tricky Tray followed by a request from each child's individual class to donate something to their baskets.

This stresses me out.

Not only do I want to support my own kiddos, I want to support my friends kiddos. Chocolate sales for their field trip? Sure. Flower sales for their Girl Scout Troop? I want to help there too. I can tell you I have gotten 14 emails from friends children for candy and nut sales for Girl Scouts. This year alone. Those mandated private school letters…

Don't Press Send

Typically this blog is written about the crazy family life we have with five kiddos, one on the spectrum, but today I am taking a minute to share an experience I had last week when I went to listen to a talk on the Internet and how its changing our lives, especially those who are most dear to us, our children.

Years ago, when the internet first began we had simplistic technology that afforded parents a learning curve to begin to understand what we as children were experiencing online. Today, its nearly a full time job keeping up with technology and how it can impact our kids day in and out. I find myself looking to my tween for ways to use Apps and software that changes faster than most parents can keep up with.

Its scary.

Earlier this year, our state was rocked when a child, just 12 took her life because of bullying. Many of us, including myself were bullied as children but our home was a safe zone, away from the struggles of pre-teen and teen life in which we could unwind, be loved …

You Are Enough

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These are the words my "little" sister told me last night. They are still sinking in however I find significant value in them, not just for me and for our relationship but for all in so many areas of our lives.

In preparing for the visit I internalized anything and everything she had said to me since she met me and in reality, it wasn't my problem--she also told me I have to learn when things aren't my problem and I do. As I readied the house I insisted the kids not touch things after I had them just so. I cleaned cabinets, I raided drawers, I tried to be perfect. I told more than one person "I hope I am worth the drive from Indiana."

As they arrived, I worried. My birthfather kept asking if I was excited. Part of me was, but there was another part that worried. As I told my nephew in this house we call it "nervouscited". I was harboring more nervous than excited and instead of sharing, I internalized. I harbored it all.

Would the house be clean …

To Be or Not To Be...Politically Correct

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I am super excited because I have a lot of friends finally feeling like they can come to me with the hard questions regarding having a child with autism. I always will say if you have met a child with autism, you know one child with autism. They call it a spectrum but I have decided, its like a rainbow. There are so many colors. There is so much autism encompasses that one can not totally understand every aspect, even when they are down and dirty in the trenches and we are currently DOWN and DIRTY!

Today as I cleaned my house from top to bottom anxiously anticipating meeting my sister and niece and nephew a message came to me in my Facebook Messenger. As much as I *hate* social media, I also find it to be a great avenue to help when used appropriately (more on that later). The question posed to me was what to call a child who is on the autism spectrum? It seemed to me that the individual asking was in close proximity to a child with autism but is afraid to step on toes. Whose toes? Pe…

How Does Autism Manifest in Serrie?

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The other day a dear friend, one I have known since college and left in Michigan texted and asked how autism manifests in Seraphina. I wanted to respond instantly but honestly the wheels started spinning and I couldn't put it into words in a simple text. As I sat in bed this morning sipping hot coffee and reading a blog post from fellow ASD momma, faithmummy, I realized it manifests in so many ways. I also realized the words that she wrote resonated within and while my child isn't her child, my sentiments as of late are the same she feels. It doesn't just manifest in Serrie, it manifests in all of us. I began to scroll through my phone pictures and realized Serrie having autism impacts us all in each of our daily lives. That impact isn't all negative but none the less it changes each moment of every day.



It impacts us when she wakes screaming because someone looked at her or got to close. It impacts me and causes me to feel as if there are nails on a chalkboard from th…

Inclusion

According to wikipedia, inclusion education is defined as "an approach to educating students with special educational needs. Under the inclusion model, students with special needs spend most or all of their time with non-special needs students. ... By contrast, inclusion is about the child's right to participate and the school's duty to accept the child.

I read this and think about my child, other children I know and how inclusion is an amazing concept but has miles to go, not because of children but because of parents.

I am scared. Scared about our society in general but more scared about the lack of knowledge and understanding so many have about disabilities and inclusion. I have had parents unaware of the fact I have a disabled child say they don't want their child in "that class" or parents who are quick to believe "not my child" when it comes to having a child with a disability.

First, I have always been open to inclusion. My mom was educating in…

Just A Ballot (probably not going to win me any friends)

Years ago, I saw voting as "just a ballot". It was immaturity, my being unaware and just plain too self absorbed to worry about much. Our nation is a mess and while I can't make statements to our major governments, the local government, specifically the school board has come under fire in recent years.

Last year there was a new budget proposal. The proposal had the potential to cut many sports leaving many people up in arms about how the district was being handled. At the time, we were new to the district and had yet to have a child in the regional district so I didn't feel the impact as much.

In the past year, I have changed. In so many ways. I have started to stand up for my beliefs and trying to agree to fit in has been less on my mind than it has been in my 37 years prior. With children ranging the gamut of gifted to special needs, interested in sports to interest in drama, I feel I see the "BIG" picture. I also feel as a former college athlete (my husba…

Longing

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Last week my birth father visited with his wife, both are kind. They have a heart of gold and my birth father's wife is a gift for allowing me to learn more about who I am genetically, who I was initially and how I may have qualities of someone I never knew. The days that we shared had so much good.  It was moments of connecting that we had never experienced. Just a little over a month ago, he learned of my existence and instead of pushing me away, he welcomed me and my family into his heart. As we talked, we shared as much as we could about our 38 year absence. When he arrived I had photo albums. We went through all my parents did for me. They have always given me all they can. I am blessed to be their daughter.

Over the weekend, we tried to share so much. One night, we sat. As we chatted, my husband began to cast videos of our children from years ago so they could watch their new grandchildren in their early years.

Each year passed. First, there was our oldest as a toddler and o…

Manual Please????

I am behind.

In everything.

I want to catch up.

My flower beds need work.

My doors need to be scrubbed and I want to sit and begin three writing projects that I have swirling within me.

Here I sit. Worried. Scared. Sad and wondering.

Begging for a manual.

Its not for autism this time. Strangely, that seems it will make this middle school journey easier.

Its not for the school itself. Its awesome. The teachers are amazing and I was impressed at back to school night.

Its for me. Or for me to learn how to help my child.

Middle School, it was a horrendous time for me. I have shared all the details before but I wasn't cute or funny and I wasn't cool. I was smart but played dumb so others would like me. Middle School changed me. Seventh grade my world turned in ways that I never expected and today I cannot forget. I was pantsed in the hallway and it continues to haunt me. I stood outside Mrs. Moffa's Science Class after lunch and he did it. He pantsed me. As everyone stood stari…

To My Daughter's Daytime Mommy

I always wondered what it would be like to be in a classroom with inclusion. When I was a child, it wasn't done. When my mom taught as I grew, it was introduced and now, its in almost every classroom at many schools. I always wondered what other kids thought about it. Did they know who the child's aides were? Did they understand why they were there? What if children thought they were mean or scary and the little ones couldn't share their feelings.

For me, I know at our district we are blessed. I have more than fallen in love with every aide and paraprofessional I have encountered. I have watched, when my oldest was young and sat in awe as they carefully lead students to where they needed to be with kindness and compassion. I looked on when kids were struggling and saw their eyes moisten knowing that the child was hurting. I knew our district was doing the best they could but I still wondered do the children see what I see?

Now that I am a parent of a child with special nee…

Discrimination

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**I want to note this did NOT happen to me nor did this happen in our district. I am friends with the PTA Board and NONE would allow such terrible behavior.****

This is the face of a disabled child. She looks typical, right? She's not. She is anything but typical. She is bright, funny and usually a happy child. She thrives on having a set schedule. She loves to be cuddled. She needs to sleep with her hand touching someone to feel safe. She has horrible sensory issues. During a meltdown, her eyes are somewhere else. She is somewhere else and there is NOTHING I can do to comfort her. She has attended her school for an entire year. She just began her second year and SHE IS LOVED. She is loved by her teachers. She is loved by her aides. She is loved by administration. Its easily seen. Its seen in their smile as they watch her. Its seen in their interactions with her. It is seen as she is gently carried out of school on her first full day when the hours were just a little too long and…

Birthday Shopping

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Today I went Birthday Shopping for Seraphina. Its those moments when I see her disability as a painful reminder of what she isn't. Luckily my husband was by my side pointing out the positive points of her delayed growth.

Four years ago today, I was already overdue waiting for Seraphina to make her entrance. Typical with all my pregnancies, she was late. I waited. I wondered. I wanted her to be there but knowing it was most likely my last pregnancy, I tried to live in the moment, relish every kick and realize the gift of carrying a child within my womb. The miracle of life is a true blessing and each pregnancy I continued to realize that.

Just a week from now, we will celebrate the anniversary of her birth. Her birth is one that I will remember in its entirety. Beginning the night before her arrival I headed to the hospital knowing it was the time of her birth. As I was not in active labor I was sent home to labor at home. I did. For hours. My husband woke and went to work. My mom …

All About Me

One of my big tips for new parents with kiddos attending school especially for those who are less verbal is to let the teachers and entire team know as much as possible about the kiddo. Last year I wrote a very long list of everything from favorite songs to how to calm Miss Seraphina down. This year her teachers all know her and so I took another direction. Here is an example of a letter from your child to his or her teacher so they know what to expect.

Good Morning,

My name is Seraphina and I will be in your classes and therapies again this year. I am looking forward to school as I have missed a schedule this last week while I didn't have school or camp. Lately my mom says I need a strict schedule to make me feel comfortable. If you could share the schedule with her as soon as you have it so she can review it with me each morning, I would appreciate it.
This summer I enjoyed ESY and my mom says it was great for me. I really missed my teachers while I was off in August. I even asked …