Monday, October 29, 2018

Reality.

Reality is that I went away this weekend and though I was physically gone and had moments of sheer peace and freedom, my head and heart were often back home. I came home to the chaos of five kids and the reminder that no matter where I am, autism is there. Always. It will be. Forever. I was slapped back into reality with a rough therapy session where I wept. My mom wept and after, I wallowed in self pity once again sitting with a glass of wine too full to share. This journey is like an angry storm, that calms in moments but shatters my soul in others. I wish for ease, for peace, for the family and children I dreamed. I will never get it and that makes me a better person but today, I wanted to share my feelings in words.

Reality.


Quietly, it slips in
The reality of loss.
Like death, the child I imagined, I dreamed gone.
Taken.
Into silence, words slipped from her lips into the abyss only to return later or perhaps, never return again.
I stand in silence as I see the ghost of who I dreamed she would be.
Simple moments, gone. Recitals. Soccer Tots. Gymnastics.
Vanished into thin air.
There will be no academic awards. Not yet. Not likely.
Still, we wake, with the reality we have to try.
We have to hope.
I well up with the reality of the family I imagined, lost, in a disability, gone.
The simple moments.
Dinners out. Family memories. Holiday’s planned and shared in joy and peace.
The reality is, normal isn’t normal. Life is changed.
I weep.
I mourn. Then I rest. I get up again.
Some days are okay. I am hopeful. I am renewed. I have visions of where we can get this little love.
Some days I see the shell of who she was, before, before autism wreaked havoc on our life.
I dream that those simple moments will return.
Acceptance. Like the waves of the roaring ocean charged with energy, acceptance of this life rolls in swiftly, with force and then ebbs back into the darkness of the angry sea.
Acceptance. Speaking up. Speaking out. Teaching others, to see the reality of the life we have, and understand the life we lost.
Advocacy. Identifying our challenges, seeking others to speak up as well. Seeking to support others, in their journey.
Advocacy. Choosing to share the expertise you have on your child with hopes it may one day help another.
Autism. The reality that this is the life we have been given.

Tuesday, October 23, 2018

Accessibility

So often children like my own spend countless hours in therapy from a young age, between early intervention where interventionists arrive at your door from morning until night to the early beginnings in school at a local district, these children often miss the childhood a parent may have imagined. As that parent, so often we try to find something outside therapy that they can call their own.

Disabilities, like fingerprints (seems to be my analogy lately) are all different. There are a vast array of differences that sometimes intertwine causing it to be a difficult task to find the right fit. For two years, our little love danced at a studio that welcomed her. Parents, though once hesitant learned to love her for who she was, her shortcomings AND her strengths and in turn their children see my child as their peer. Its a gift. Recently though, she's not wanted to attend and waking with tears in her eyes asked not to go. Though I wanted it more than anything for her, this weekend I made the call do end classes. With an open door policy, the owner of the studio told me to bring her back whenever I needed. Seraphina isn't the only child that has benefited as a disabled child at this studio. So many others have been accepted and welcomed. As they are. They have a number of well versed teachers but as they helped mold and change Seraphina, its my belief that she too helped to mold and change them.

With her sensory seeking behavior it was my intent to find something else that she loved. As she flips through the house running and jumping, gymnastics seemed like a natural fit and so I went to the best recommendation possible, Facebook and asked for suggestions. A few were made, some were far and others weren't as far. I made a few calls and yesterday after school we embarked on the 20 mile ride to realize there is a difference in truly being open to special needs and understanding their needs for accessibility.

We entered the gym, well appointed and beautifully light. We had been there before and I knew the types of instructors they had and truly had high hopes for the experience. I prayed "this was it". I called my prayer warriors also asking them to pray for her to be accepted and understood. They tried. Reality is however, it was not a place a child like Seraphina could be successful. I do however believe it has potential and that they truly had the kids best interest at heart AND could successfully handle children with other disabilities but not autism, not in this group...but like I said, there is potential.

As I drove away, tears streaming down my face, I phoned my autism bestie. She gets it. She lives it. She understand. I told her how I was heartbroken. I watched as there were multiple groups and multiple stations and how it was her first time going there and as I lamented about the unfair card our children drew, she said "we should start one ourselves". How I would. In a heartbeat. If I had the capital I would purchase a franchise and start a place for kids with special needs but reality is, I don't.

So until then, a few tips for parents who may have kiddos on the spectrum or with anxiety or other struggles when starting at a new gym.

First, go when its quiet. Make an appointment for a private lesson, even if it costs a little more and take that time to be there. Allow the child to seek if they are seekers and explore. Let them understand what the facility is all about. I realized that Seraphina had only been to a facility like this during an "open play". It is my belief that it was her expectation it was the same scenario. Truly, it wasn't and though I discussed it with her on the ride down, it was not enough to give her what she needed to be successful.

Second, find a time to enter a class when the gym isn't busy. I think there were 4 classes going on during our session and her ability to stay with her group was not going to work. I know at this gym, they have a smaller gym, Perhaps if they had a class for kids like Seraphina in that gym it may be a stepping stone for children like her. As I said though, kids like Seraphina are in class all day and accommodating that is a challenge for many places. If this isn't possible, suggest an aide in the class. This particular class did have aides, but often aides are students and while they are compassionate and understanding working with a special needs child requires training and understanding often far beyond their breadth of knowledge.

Third, be open and honest. I was and they were. They tried their very best but Seraphina, like other kids with ASD is her own unique individual unlike any book, brochure or podcast. As I sat I had the blessing to be in the presence of another mother struggling and our words and conversation truly kept me uplifted as I listened to her screech and struggle at different points. I was open with all the parents and also apologized if she was a distraction--lucky for me, children are more forgiving than adults.

Fourth, try, try again. I do believe had she been able to visit and try again that it would have come together. Perhaps this isn't the right place or space and perhaps someone I know will win that mega billions lottery and give me funding for that special needs gym I have in my heart. One never knows what tomorrow brings but after the tears have fallen, after you have dried your eyes, realized that you have taken a step to find what is right for your child and perhaps its not the right one, right now...and that is okay.

I am grateful for the ability to accept that I am growing in this journey and grateful for this gift of our path and I am hopeful that maybe someday, someway I can help other moms find their way and perhaps even hold their hand when they need to be held.

Sunday, October 21, 2018

Learning Acceptance

Accepting what is instead of what you wished it would be is one of the greatest challenges I have faced since embarking on this unexpected journey into the secret world of autism. Often, on quiet nights when I expected to be out celebrating Halloween or even a Confirmation, I find myself snuggled into bed beside my sweet girl breathing in all she is and who she has helped me to become.

Yesterday was the first time I left a party with acceptance instead of sadness. Our dear friend who has been a leader in the special needs parenting walk for our family was celebrating one of her typical children's Confirmation. We were invited to attend and at first I wanted to say "no". Going to parties isn't easy anymore and while we take turns chasing our sweet girl around, other adults converse and share life as it should is expected to be. Instead, our path is slightly different. We chase. We catch. We smile and we accept that this is the journey that SHOULD be for our family.

Its not easy.

It is however better than the life I expected I would have. Why? I have changed.

In nearly 3 years time, I have gone from someone who looked for others acceptance, wanted to be who I was not and strove for outer perfection to someone who has more inner peace, experience and understanding than any experience in my entire life journey could teach me before my sweet girl.

Yesterday I climbed into bed next to one of my middle children, I celebrated the quiet time with tea and masks that just a few years ago, I would have lamented. I have learned that quiet time, time to talk, time to share is more important than what I had expected my journey would include in life.

I won't pretend that the next time my sweet girl neck hugs toddlers, man handles babies and strips down naked I will have the same feelings but I will remember that with each experience I am growing in acceptance that this journey is helping me be a better person with more strength, understanding and compassion than I could ever muster without her in my life.


Sunday, October 14, 2018

Choosing to Advocate, Kindly.

**Disclaimer, I LOVE MY SCHOOL, I LOVE MY CHILD'S TEAM but right now I don't LOVE how she feels and so today I took a step....read below to hear about how this journey causes parents to be an advocate and how I choose to do it...kindly.***

I don't like conflict. In fact when someone is hurting or upset, my soul fires up and I well up with tears wishing that the pain and discomfort I felt would subside. I believe I have become an empath from the journey that I have traveled in my own life and while its a blessing, its also a curse.

Last year as we went to our IEP meeting for my daughter I knew they would place her in kindergarten. They had every right to do so. In our state, legally they have to give her two years of preschool. They did. Academically she was on target and in fact ahead of some of her typical peers but still there was a pit. In my stomach. As I signed the IEP papers I did so knowing I didn't feel it was the right placement for her, not because of the staff or the team or the administration (refer to the disclaimer) but because SHE herself was not ready. Emotionally. Socially. Behaviorally.

To better prepare my love for her journey into kindergarten, I chose to consider medications to help her, with her behaviors and hope that if we managed those behaviors that she may find success in her kindergarten career but still, something held me back. As we spent the summer tweaking medications, visiting doctors and working to manage her aggression, I prepared her for what was to be in school this year.

Nothing however could prepare me to receive that first phone call and as my phone rang to let me know of that first time my child bit I was notified she had to be restrained. I NEVER want my child to hurt another individual or herself so while I understand restraint, I sat in my car, hot tears streaming down my cheeks knowing that she felt so agitated that she lashed out and then wondered if she felt fear as she was restrained? I wished I could see her, hug her, hold her and tell her that I loved her, challenges and all. Later as my daughter stepped of the bus, that fear was only compounded by by her recollection of hearing her sister unhappy in her classroom and in the hall. Never did I consider how hard it would be for them to hear her cry, scream and throw fits when traveling the halls on walks for breaks but it has. It has to the point that I have even talked to my pediatrician about my middle child having anxiety.

As the weeks have progressed, I have gotten more calls and then this week got one that I really didn't know how to interpret. So I talked to a few friends, those in the special needs community and was given options to help me on this journey.

It is apparent to me that her program isn't currently right for her and with an IEP, or individualized education plan, it is okay to ask for change, but to do so with kindness and compassion and so this morning after two nights of tears and little sleep I decided to do it my way, with an email, with suggestions with my own thoughts and recommendations.

So many times I know parents of children with disabilities feel its best to lawyer up or grab an advocate but honestly the thoughts of that cause me to want to vomit. Remember that paragraph about conflict or confrontation? So I chose to do it my way. Perhaps you are like me and you want to do it my way too. What has worked for me thus far? What could work for you?

An email. In that email I try to cover three major things.

First, I always let the staff and administration know how much I appreciate them. I do. I believe 100% that the group of individuals in my daughters life care for her and love her, for who she is. I believe that they have her best interest at heart and I highlight that--if that isn't you, maybe you do need to consider other avenues.

 Second, I choose to share my own observations. Although I am not a professional in education I am HER professional. I am with her constantly and I know her better than anyone else. I carried her in my womb. I nursed her into the wee hours of the morning. I cried as I documented her delays and obvious signs of autism. I also celebrated when we met small milestones.

Third, I make suggestions. I never just have one suggestion. I choose to give options. I want them to know that while I am her best advocate, while I know her best, I am open to their vision because the are the professionals. Then, I send the email, say a prayer that we have common beliefs about my child, sit back, shed a few tears, embrace this journey and move forward.

 This is our life.

So today, I sent that email. I chose to advocate, kindly. Hopefully it will continue to work for me as it has in the past and if it doesn't, I will reconsider, I will reset, I will listen and begin to learn from my journey, from other journey's and from the path that God has chosen for our family.

Faith: It does not make things easy it makes them possible.
Luke 1:37


Tuesday, October 9, 2018

Without Autism

Our lives, they may be easier.

Without autism, we may have less struggle facing the real world.

Without autism, we may have more ease within our day.

Without autism, we may have stronger ties to those outside the home.

Without autism, we may have continued living the way we were, the way we thought we were supposed to be.

But

Without autism, we wouldn't have her, the child who walked into our lives and broke our hearts and in breaking our hearts she shattered walls.

Without autism, we wouldn't have that family bond between siblings that binds more than any I have witnessed in my day.

Without autism, we would take for granted small steps like a family outing, where we all tagged along.

Without autism, there would be a piece of our heart that would be missing.

In the past two years, autism has seemed like much of our lives and it has shaped it in ways we never expected but without it, our picture wouldn't be whole.

Stand by as I begin to share the many GIFTS, yes GIFTS that autism continues to give us while I work to create my first book...about The Blessing Behind the Face of Autism.


Monday, October 1, 2018

I'm Going To Stop Saying I Am Sorry

Dear Little Love,

Today, the phone rang again, it was school. As I answered I knew who it would be because its Monday and on Monday, well, life is hard for you.

I knew it would be.

As we dressed you and I watched you play, I told you about your day, who you would see and what activities you may encounter. You told me "no". Still, I pushed through breakfast and as I packed your lunch you wandered away letting me know that you had no intention of heading on the bus to school.

We drove up to the top of the hill.

You insisted on getting out. I like to keep you in the car. You want so much to be like the "other" children, yet you are who you were meant to be, a child who is teaching our entire family and all those we encounter. You truly are a gift but your baggage you carry weighs you down.

As the bus passed, you were agitated. You wanted to go. You watched as the others, the 6th graders, 5th graders, 4th graders and Kindergartners boarded the bus and instantly you knew, you knew where they were going and you wanted to be included.

You wept.

My hand rested gently on your back as I wore your backpack and I wished more than anything you too could ride that bus.

You see sweet girl, that bus is too much Its too loud and though the kids have the best intentions, its not perfect, and there is no aide to protect you, and so as you wept, another bus rounded the corner. I carefully buckled your backpack on your shoulders and you insisted that you needed to be on that "D" is for Dinosaur bus.

If you only knew sweet girl. If you only knew how I longed for you to board that bus with the others. If you only knew how I wish your life were easier and in turn our lives as well.

Its not.

You are our gift.

You are the reason we are learning compassion, understanding, empathy. You are who you are intended to be.

As the day moved on, there was no call, unlike weeks past, I didn't hear you had bitten or pinched or kicked and my heart was relieved and then, as I whipped up a batch of after school cookies, the phone rang.

My heart sank.

I ended the call with my very best friend and knew who would be on the other end.

As the call echoed, I knew the conference we were about to have.

Immediately, I was embarrassed. I felt sorry. I apologized and then it came, "Mrs. North, you have nothing to apologize for".

It seems sweet girl, since your diagnosis, I have spent a lot of time crying or apologizing or a bit of both at the same time but today, you see, it was different. I listened. The administrator reminded me with love and compassion, the same love and compassion we are learning from you that its okay.

You see, I was drafted my love. I didn't choose this journey but some people choose children like you. Some people thrive on seeing the growth of kids who think, act and learn differently and little did I know one day I would join their ranks.

And so, instead of apologizing, today I thanked them. I thanked them for acting with love and kindness. I thanked them for accepting you for who you are and where you are today and made a few suggestions of my own.

Sweet girl, you are only 5, but today again I am reminded of the blessing of autism. It has helped me learn that I cannot control others, only myself and its time to stop apologizing for that which I cannot control.

So sweet girl, show that sweet side of yourself. Work towards being the best you can be and perhaps, next week, next Monday I won't get a call reminding me that I need to stop apologizing and start recognizing all you continue to teach me each day.

David.

I'm not really sure WHAT to title this blog. A child? A child I won't meet? A child who helped me see my path as to my God giv...