Namastè!
I hope you're experiencing copious amounts thereof tonight.
In the midst of prepping for my HoliTAYÈ Expo, I wanted to make sure the blog remained fresh and interesting. To that end I convinced a dear longtime friend to share her journey with us.
You know we are passionate about inclusion and that means EVERY parent has a place in our namaSPACE.
Michelle's daughter is named Mariah. Mariah is a beautiful, talented, strong young lady, who just happens to live with autism. Notice I said "live with"--her desire for a good quality of life, her interests, and her goals are in line with any neurologically typical teen. Now, here is her story, in her mom's words.
On March 1, 2000, I gave birth to a 7lb baby girl that I named Mariah. She seemed like any baby girl. The only difference was she was very quiet and very observant growing up. She rarely spoke even to me her own mom. She was real calm and quiet up until the age of 5 when we noticed she was having Petit Mal Seizures. It was horrible because she would have these seizures daily and frequently.
Then one day at the age of 7 we had to have her tested because the teachers were concerned that she wasn't thriving like the other kids. That day sitting at the doctors office getting her dx, I didn't know what to expect. As I sat there and I listened attentively to the doctor, he said the word Autism. My mind was racing & all these questions arose. Is she gonna die? Is she ok? Is there a cure? What is Autism? What do I do for her? Where do I go for help?
He then said, "She will live, but she will never be able to speak or be social. She will never have a quality life." Those words broke my heart as I turned to see my baby girl sitting there playing with her toy monkey. I was overwhelmed and heartbroken. He handed me a paper stating his findings and dx Autism POS/NOS.
I was still so very clueless and I felt so alone. Back then internet and social media was not as popular as it is now so I had no way of researching or reaching out to others for guidance.
A few days later, we had a meeting at her school and once again I was told she would never be verbal, never be social and would never be able to learn. I sat there dumbfounded and sad. Her school also told me they didn't have a proper class for her dx [diagnosis] and that the following year she would be placed in another school in the special education class room. What was left of my broken heart shattered even more that day, because I remembered seeing the kids with disabilities being mistreated in schools as I grew up and now, in my mind, my child was going to be one of the kids being mistreated.
I was introduced to her new teacher that was going to be her teacher the following school year. It was going to be her first year teaching. She promised me she would take care of her and be the best teacher for her. I looked at her and all I could do was pray and hope my baby girl would be ok.
Mariah would have meltdowns and seizures all the time. Life was a struggle. It was stressful on all of us. She never to this day had a meltdown at school she saved those for home. Her Autism isn't the textbook definition of Autism, and let me just say all kids are different.
Mariah somehow formed a bond with her teacher and I fought for 8 yrs to keep them together. Her teacher and I worked on getting Mariah to use her words when she needed. We never gave up on Mariah. Her seizures stopped at age 11 but she still had meltdowns where she would destroy her stuff. Tearing up her books or throwing her stuffed animals and sometimes throwing herself on the floor. Family members would say, "Oh she's spoiled you need to discipline her!" and I was faced with the thoughts of am I spoiling her, but I knew it wasn't that. I ignored them as I ignored those words uttered years before: "She will never be speak or be social. She will never read or write."
All those years ago I was alone but I was determined to fight for my child's rights and get all the information needed on Autism to help her through life.
Today I have a 16 yr old teenage girl. She is reading! Not as good as others her age, but she is reading. She writes. And oh my goodness, she is a social one!! She has drama like all teens and she has made friends. She loves art and music and makeup. She still has meltdowns but it is stomping her feet as she walks and eye rolling and slams the door to her room. I guess it could be teen attitude.
She still struggles with some issues but we have learned how to get through them. Everything the doctor and former teachers said she wouldn't do, she does!!!
Not all children are the same but we as parents, as teachers, and family just need to support and love them. We need to have patience tons of it!!! And remember to celebrate their milestones no matter how small or how big. They will get were they need to be in their own time, or they will be where they need to be and we must embrace them for their uniqueness! We have to always be vigilant and be their voice when they can not speak.
Now there is so much out there to help our children with Autism. I have meet other moms through social media and I have found that I am no longer alone. I went through a lot through the years with Mariah and it was a hard road alone, but I feel blessed to be her mom. She has taught me so much and our journey has been able to help others in their journey.
This family has been a part of my own family for a long time now. The same patience and love Michelle showers on her family, has been shared with me and mine. She is an absolute powerhouse when it comes to advocating for her daughter, and she is always willing to reach out and encourage others.
As we all share what we are thankful for this month, I could not miss the opportunity to share her story with you. I am absolutely awestruck by how much gratitude she emanates daily. She is a saint to me. I admire her strength, and she's gorgeous inside and out. (Mariah is so cute. I've gotten to watch her grow from a little girl to a young lady and she is stunning, with her beautiful eyes and chubby cheeks. She is perfection.)
I also wanted to do this collaboration to let any Namastè mommies or daddies with a challenge ahead know, YOU ARE NOT ALONE. Michelle felt alone, but she now makes sure other parents in her shoes don't. She is just an angel.
I got all teary-eyed reading her email, but it was partly from joy because I have seen firsthand how much Mariah can do. She reads. She dresses herself--in style, on trend, and quite adorably! She uses her words. I tell Michelle all the time, "Look at my Riah, being extra typical."
Let this empower and encourage you.
Namastè!
-- Tayè K. ♡
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