Category Archives: Advocacy

Joey’s Jamboree- Celebrating Down Syndrome Awareness

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One of the events that we love going to in our Down syndrome community is the annual Buddy Walk. For many Down syndrome organizations this is the number one way to raise funds for their organization that helps families in their area.

After taking a few years away from participating in the Connecticut Down Syndrome Congress’s Buddy Walk, due to the craziness of our lives, I decided it was time to form a team again. There’s nothing more heart warming than seeing hundreds of people all come together to celebrate our beautiful children.

October is Down syndrome awareness month and I can’t think of a better way start off teh month by walking in a Buddy Walk. The Buddy Walk here in Connecticut is on Saturday, October 1st at Rentschler Field in East Hartford. Registration opens at 11am and the walk steps off at noon.

If you are local here in Connecticut and would like to join our team, we welcome you with open arms to join Joey’s Jamboree. You can register on our team’s website. If you are not able to join us but would like to donate to our team, you may do so by going to our team’s website by clicking here. And remember, it’s tax deductible!

Also, if you would like to participate in your local Buddy Walk, you can see if you have one near you by clicking here.

Thank you in advance for your love and support!

 

Today I’m Over at Her View From Home!

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I’m proud to say that I had another post published over at Her View From Home today, this time about Things Not To Say To Special Needs Parents. In the article, I decided to reach out to some of my friends and fellow moms who are also special needs moms to get more ideas.

I’m so proud and honored to be part of such an amazing website and group of moms!

If you missed my other post, Our Journey With Down Syndrome: We Would Never End This Pregnancy, be sure to check it out too!

21 ways being Joey’s mom has changed my life

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  1. Joey taught me true love comes in many forms, especially when it comes out of those almond shaped eyes.
  2. Made me discover what it means to be patient (it took Joey almost 2 years to walk!)
  3. Extreme pride in my child when he achieves a new milestone… Watching my Joey’s “first steps.” It took more hours than I can count of physical therapy for those steps to happen! Thank you Michelle for all your help the first three years of his life getting him to sit, crawl, stand and walk!
  4. I learned to take a minute to truly enjoy the “little things” in life and taking time to “smell the roses.”
  5. Not to take things for granted. The poem Welcome to Holland describes my exact feelings during my pregancy with Joey.
  6. Mr. Clean Magic Erasers are my super hero in time of crisis, ANY mom can understand that!
  7. Celebrate small victories/milestones- many of these have been huge for him, including walking, feeding himself. Even after 10 years, we still cheer and celebrate ANY new accomplishment Joey makes! These milestones can take years to happen!
  8. Courage to fight for what is right for our child who cannot speak for himself. My husband and I are his number one advocates and always will be till the day we die.
  9. No more extreme partying- I went from being a 23 year old “wild child” to a very responsible adult overnight (although I still love a good margarita or glass of wine!).
  10. After Joey was born, I met a whole new group of friends- I LOVE my DS families, especially my fellow moms!!! We have made lifelong friends with many of these fellow extra ordinary families!
  11. I’m now the ultimate stain remover! Thanks to Joey, I can pretty much now get any stain out of my kid’s clothes!
  12. Sleeping in is a thing of the past- I swear, Joey has an internal alarm clock built into him. He’s awake anytime between 4:30-6:00 am every single morning. If we sleep till 7:00 am without interruptions, it’s a MIRACLE (or he’s sick)!
  13. Coffee is my best friend- wouldn’t it be yours with a 4:30 am wake up call almost on a daily basis?!
  14. Don’t believe everything medical professionals tell you or you read! Once a doctor told us that Joey wouldn’t walk until he was 3 or 4, he proved them wrong! And during my pregnancy with Joey, I read every book on Down syndrome I could get my hands on and believed he would have every thing mentioned in the books wrong with him like a Congenital Heart Defect like most children with Down syndrome and he didn’t!
  15. The joy of hearing your child speak for the first time! Even though he’s still considered nonverbal, Joey’s vocabulary consists of one actual English word, “Mom,” it was the most amazing day of my life hearing it for the first time 2 years ago.
  16. The power of prayer… don’t get me wrong, I’ve always prayed but once Joey came around, I truly discovered my love for God and when in the time of need, a simple prayer can go a long way.
  17. I’ve developed the stomach of steel… I can handle any bodily fluid without getting sick after having a child with colitis!
  18. Becoming a walking medical dictionary! With all Joey’s doctors and various diagnosis and illnesses, I had to brush up on my medical terminology!
  19. Becoming a walking legal dictionary when it comes to Special Education and Disability Rights!  Having to learn about my child’s Rights: IEP’s, IFSP’s, ADA, IDEA, FERPA and many, many more!
  20. Home hair cut battles. Cutting Joey’s hair can be quite the challenge, but somehow I manage to create his hair from being a shaggy mop into a work of art every single time even while rolling around on the floor with him and a set of clippers (one of these days I should have someone get a video…)
  21. A true admiration and respect for teachers, paraprofessionals, nurses, doctors, dentists, therapists and every other professional out there that helps to take care of kiddos like Joey. Their jobs are NOT easy, they work tirelessly to take care of our children. Many are underpaid and overworked, but they go above and beyond the call of duty!

 

To the lady in Shoprite’s parking lot…

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“Hey! You shouldn’t park there.”

As I made eye contact with the lady who told me this just a few hours ago, as I was lugging Joey and a cart full of groceries out of the store into my van at our local Shoprite, I could see the anger in her eyes.

I kindly tried to explain to her that the handicap parking pass hanging in the front window of my van is for my son, not me and that I had just put him in the car. She let out a snobby huff, rolled her eyes, and walked away… Rather than letting it get to me and boil inside and get myself angry, I decided to educate my readers and say to myself, “just keep swimming, just keep swimming…”

You see, the beginning of a regular trip to the grocery with Joey consists of me praying that Joey doesn’t get away from me & runs in front of a moving car, or decides to drop to his knees while walking across the parking lot and then even have to carry the over 50 pounds of dead weight he is and THEN hope that the Caroline’s Cart is available so I don’t have to lift him (and kill my back in the process) and squeeze him into the toddler seat of a regular grocery cart.

There are some outings I don’t have to use the pass. It all depends on how big the parking lot is and how many moving vehicles are around. If it’s a small parking lot, then no, I don’t use it.

Joey’s pediatrician suggested for us to get the handicap pass when I started having back problems from lifting him so much including carrying him through parking lots when he’s too stubborn to walk. He also has a hard time in the heat and gets fatigued easily so it’s a huge help in the summer time especially!

And some of you may wonder why I don’t wait till evening after the kids are in bed to go to the store. Well, Joey LOVES going out with me running errands. He’s like a little mayor of our town. Everywhere we go, someone knows him and he loves to say hi to people by waving and hoping they notice him. This gives him socialization skills with the public and having an Austic child, that’s huge!

There are other people like me who are also proud parents of special needs children who have the same struggles as me going to the store who have had the same type of thing said to them by complete and total strangers. There are also people who have hidden disabilities that require them to have a handicap pass themselves who have as well been singled out by strangers who think they know everything.

Sadly, yes, there are some people who take advantage of handicap passes. Some people hang on to their deceased loved one’s pass and take advantage of it, but let me assure you, the ONLY time I ever use the pass is when I have Joey with me. So please take his post as one from a mom trying to advocate for Joey and educate the public on hidden and visible disabilities and using a handicap pass.

I hope somehow the woman who I encountered today in the parking lot reads this and understands a little more. Also, think before you speak. Thank you! ♥

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***I have no makeup on and yes, Joey is picking his nose with his thumb, story of my life, lol!

 

The last time I said it…

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As a parent of a child who has Down syndrome, there’s one word that makes my stomach churn every time I hear it, the R-word.

I admit, as a teenager and young adult, I used the word more times than I can count. I used to be so far from “politically correct” with a lot of my language before I became a parent. You never knew what the heck was going to come out of my mouth. Looking back, it was pathetic. But that was then and this is now, and I can’t dwell on my own past actions, but hopefully I can help to change someone’s future actions.

Come on people, words can hurt. They can really hurt, even if you don’t mean them in the context you say them. It doesn’t matter if it’s the r-word, n-word, making fun of someone who is gay, Jewish, Christian, anything hate related. It all plain old hurts to someone at some point!

I’ll never forget the last time I said the r-word. I was pregnant with Joey and we had recently gotten my prenatal diagnosis. I was laying in bed watching TV one evening. I can’t remember exactly what I was watching but I remember laughing out loud to myself and saying, “That’s so ret@rded!”

As soon as the word came out of my mouth, I realized what I had said and tears filled my eyes. I could feel Joey fluttering around in my stomach as I wiped away the tears then started rubbing my stomach. I vowed right then and there to NEVER use the r-word again. And 11 years later, I still haven’t used that word and never will again.

I’ve called people out on using the word before in front of me. Most used the excuse, “I didn’t mean it that way.” I know they didn’t but then how DID they mean it?
I don’t call people out as much as I used to. Instead, I take a deep breath and I pray for that person. I pray that they open their eyes and see how beautiful Joey and others like him are and they don’t deserve to be associated with language like that.

John 13:35-35

“A new command I give you: Love one another. As I have loved you, so you must love one another. By this everyone will know that you are my disciples, if you love one another.”

But as for ignorant people who use the r-word on a daily basis along with other hateful words, I just pray for them and pray that someday they will change. Heck, if I can change, ANYONE can.

I know that years ago, it was acceptable for people to use the r-word when referring to individuals with Down syndrome, and Autism. But times have changed, and as a parent of such an extraordinary child, I must advocate for him in every single way possible.

There is only one r-word that should be used towards individuals with any intellectual or developmental disability and that word is RESPECT!

Know Your Child’s Educational Rights

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Recently, we had some events that happened that have made me put back on my advocacy shoes and brush up on Special Education Law. When Joey was still in Early Intervention aka Birth to Three here in Connecticut, I took a Parent Advocacy Leadership workshop. It was one of the best things I could have done. That along with attending multiple Down syndrome conventions, locally and nationally, I have learned so much about fighting for what is best for Joey and I will continue to learn as long as I’m living.

As a parent, be sure you know your child’s rights, even if they’re not in Special Education. There are several laws out there to protect your child: The IDEA (Individuals with Disabilities Education Act), The ESSA (Every Student Succeeds Act, AKA “No Child Left Behind”), The FERPA (Family Education Rights and Protection Act), The WIOA (Workplace Innovation and Opportunities Act), The Higher Education Act, and also your child’s civil rights.

Every time I feel discouraged, I just look at Jojoe and remember why I fight for him. As a special needs parents, we MUST fight for the most needy population, many of these individuals cannot speak for themselves, although I know some who can and I love seeing pictures of them on Capitol Hill, addressing our government and being totally awesome self advocates. Until the day comes that Joey can speak for himself, I will continue fighting for him.

You can learn about all of these laws, straight from the U.S. Department of Education’s website. Educate yourself, you are your child’s first and number one advocate, but just remember you are not alone. If you need to reach out to other parents or advocates, don’t be shy or worried someone won’t believe you. Heck, there’s still times I reach out to parents of children who are older than mine for advice.