Tag: fcvblogsquad

It’s Coming, April 5th

In 2017, Stalen was 21 months old and was diagnosed with autism. I didn’t have it all together. I was like a fish out of water. There was so much I didn’t know, so many worries, so many fears. What do you do first?

I stumbled across this page on Facebook called Finding Cooper’s Voice. The first video I watched was this Mom, Kate, crying in her car. It resonated with me because I knew there was at least one other person in the world who was feeling and struggling just like I was. Although worlds apart, we were together in trying to do everything we could for our autistic sons.

My friend Kate, has selflessly shared her family with the world, while enduring all the criticism and judgement that comes with that.

Her family is a fun loving and wild bunch. The kind of family that you meet and you want to be friends with. Her son Cooper is autistic and loves trains. He has two amazing younger brothers, Sawyer and Harbor. Sawyer loves hockey and Harbie is all about monster jam. They have a beautiful baby sister named Wynnie. Their Dad Jamie, is a grill master and fishing enthusiast.

My friend Kate is brave and strong. Every day she wakes up and does her very best for all of her children. She has also been a lifeline for so many. Not only has she made so many feel like they are not alone, but she has shone a bright light on autism….acceptance, understanding, inclusion and so many other topics that are important to families with an autistic loved one.

It is because of Kate and Finding Cooper’s Voice that I decided to start sharing Stalen’s journey. It is also through her writing that I realized that I needed to find the joy in every day, instead of focusing on the negative.

I am thrilled to support Kate as she prepares to launch her book in April. Forever Boy is going to be amazing. I have pre-ordered a copy and you can reserve yours on Amazon. #ForeverBoy #getyours

I am more than a caregiver

I am more than a caregiver…

But it’s easy to get lost in that enormous responsibility of raising a child with complex needs. Doctor, therapist, hair dresser, chef, physiotherapist, receptionist, driver, giver of hugs and kisses-we wear all the hats.

We also face significant challenges every day. Even the most basic task becomes extremely difficult when combined with autism. Things like visiting with family, celebrating special occasions and trips to the grocery store become Olympic events. It’s all about the fastest time to get in and get out, if we can go at all.

We often lose friends and others avoid us. Not everyone understands how difficult it is to exist in limbo between two worlds. One world that sees everything differently, minimally, beautifully and understands that everyone has different needs, wants and experiences. There is also the world of sameness that runs on the idea that people are very similar with similar behaviours, milestones, wants and needs.

I’ve spent more time in the last year with Stalen’s medical team of surgeons, doctors, and nurses than I have with my friends.

Our days are long and full, there isn’t must time for anything beyond the essential. I spend 6-9 hours every day between therapies and administering medicine, if you throw in making meals and doing laundry-the day is jam packed. It’s easy to lose yourself in the daily to do list, paperwork and challenges of autism.

I love my son more than anything in the world. I love taking care of him, it is my top priority. There isn’t anything I wouldn’t do for him and I wouldn’t have it any other way. But, there isn’t much time left for me. It’s the reality of the situation we have been living in these last few years. I know it won’t be like this forever.

I don’t know how you can travel this journey and not lose yourself. The only positive thing in losing yourself is that you will find yourself again. As you travel this road, you will find bits and pieces of yourself in the debris along the roadside but new pieces will also emerge.

Know that the gap between who you were before you encountered autism and who you are now is filled with so much growth, love, hope, strength, tears, experience, fight and resilience.

Hold onto the hope that as your child grows, matures, and increases their independence you will also discover more of who you are by doing things that you once loved. You will also discover new things that you love by taking time for you, as time becomes available and priorities are adjusted.

I am more than a caregiver and I’m working to define all that MORE encompasses.

There is no room for shame

About two years ago my son and I were waiting in line at Walmart. He was sitting in the cart happily flapping and stimming as we waited. A lady waiting in line behind us started talking to him. When he didn’t respond I explained to her that he was non-verbal and on the autism spectrum. She immediately proceeded to thank me and tell me how great it was that I wasn’t ashamed to bring him out and about in the community.

I will never be ashamed that my son has autism. It’s one of the many parts of him that contribute to making him the amazing little boy that I love and adore.

No one could ever take over the space in my heart that he fills with his spins, squeals, smiles, jokes and flaps. These things are mixed in amongst deep love, hope and faith.

There is no room for shame here.

I’m not ashamed of autism and you shouldn’t be either because it’s not about a diagnosis.

It’s about the person.

My son brings so much more to this world than autism. He is smart, funny, charming, handsome, witty, kind, brave, loving.

I would hate for anyone to miss out on the positive bright light that he shines because they are consumed by the negatives.

Don’t miss out on something that could be amazing just because it could also be difficult.

Autism may look hard and challenging on the outside.

But, HE lives it every day from within.

Why would I punish him with shame for a life circumstance that he has absolutely no control over?

I will always take my son into the community.
I will always encourage and support him.
I will always hope for progress for him.
I will always advocate for him.
I will always walk beside him.
I will always be his dance partner even when there is no music.
I will always ensure that he is treated with respect and dignity because he is a human being and deserves to be treated as such.

As I watch this bright, brave boy climb mountains and shatter nevers, I feel nothing but pride and gratitude because he’s mine and I am blessed beyond measure to be his Mama.

We need your help.

When we stay silent about things that matter, they don’t get better. Nothing changes when we turn our heads to injustice.

Every day so many of us put our kids on the school bus or we drop them off at the front doors of the school. We tell them we love them and we tell them to have a good day. We imagine them learning math, reading books, hopefully staying out of trouble, eating their lunch and enjoying time outside.

Special needs parents face the same drop off and pick ups. Although the day may look different for our kids. We still send our kids off just like everyone else with hope, faith and trust.

We never imagine our child coming home having had a paper stapled to their head by their teacher’s aid. And we shouldn’t have to imagine or even try to fathom this.

But, it has become a reality for a family after their son with autism had a paper stapled to his head by a teacher’s aid. She stapled the reminder note to his head so he would bring a water bottle to school. This teacher’s aid only received a reprimand letter recommending that they don’t staple papers to a child’s body.

Today, it is a child with autism, a note and a stapler. Tomorrow it could be your daughter, nephew or grand child.

All children need to be protected.

In this case the Boardman school board has failed to protect this child. So, we must do so.

We need your help! We must use our voices so that all our children are protected always.

What can you do to help?

Email or call the school board in Boardman and let them know that this is not acceptable. We need to make sure that this doesn’t happen to another child.

https://www.boardman.k12.oh.us/districtBoardEd.aspx?fbclid=IwAR0fdzK4Y6GjI7LQqxBnlkZ2yokkhRcJlwJOAbgf0x4Y_qxVJPE58QcUpZM

We can’t let anyone steal that hope, faith and trust that we send our kids off with everyday!

Worry vs wonder

When your raising a child with special needs you are no stranger to worry. I’ve learned that the worries will consume you, if you allow it. I worry every day about my son’s safety, about his health, his happiness, about the world accepting him for who he really is.

My son Stalen, was diagnosed on the autism spectrum when he was 21 months old. He is almost 6 years old and non-verbal.

One of the underlying challenges I worry about is the uncertainty of the future. With my step-children, I still have worries but I’m certain of some milestones like a drivers license, employment, pursuit of post secondary education, choosing a career, starting a family, buying a house, vehicle etc. Many of these things are unknown right now for Stalen. He will definitely achieve wonderful milestones but they will probably look different than those of his sisters and brother.

I always wonder what the later years will look like and what types of support and assistance Stalen will require. I try to imagine him as a teenager and as an adult.

I wonder if he will ever love Christmas?

I wonder if he will develop age appropriate interests?

I wonder if he will find his voice?

I wonder if he will always hold my hand when we go out?

I wonder if he will always wake up smiling and ready to take on the day?

I wonder if he will try new foods?

Each wonder also comes with some worry.

Will I be explaining his love of Dora and Buzz Lightyear into his 20s?

What if he doesn’t try new foods? Will he be 15 and I’ll have the same stress of weighing him on a regular basis and trying to get calories into him?

There will always be wonder on this journey. Subsequently, there will always be worry on this journey.

There will always be questions that I wonder and worry about and we will only get those answers as time passes.

I try not to worry about the things I can’t control. It is difficult and sometimes these worries get the best of me.

I will continue to wonder with hope and faith.

I will continue to focus on my son, his needs, his progress and skill acquisition. I will continue to encourage, support and love him unconditionally. I will continue to advocate for him as I have always done. I will continue to share our story with others, to educate when an opportunity arises and to spread as much kindness, understanding and love as we can.

I am excited for the future, despite the unknown. I do know that my boy is amazing and will crush any barrier or limit that comes his way. He has already established a wonderful and beautiful sense of self. I take great comfort in that carrying forward with him throughout life; in the person that I know he is, the boy he is growing into and the future man that he will become.

We will focus with open hearts and open minds with hope, faith, love, and determination on the pages in Stalen’s story, that are yet to be written, discovered and explored.