Category Archives: communication

Important Life Lessons Down Syndrome Siblings Taught Us

Standard
*this post may contain affiliate links

There is a true connection between a child who has special needs and their siblings. Honestly, there’s no other connection like it. I know this for a fact, first hand from watching Leah & Aiden and how they are with Joey. It’s truly wonderful to sit back and watch them communicate and play with him. They always seem to know exactly what he wants/needs.

I’ve decided to “interview” Leah & Aiden about having Joey as their brother, and share their responses with my readers. I’m not going to go into details about what they said, just know that I’m super proud of them for opening up to me and for their honesty. They truly are amazing kids!

I also decided that Leah is mature enough to read a book called Fasten Your Seatbelt: A Crash Course on Down Syndrome for Brothers and Sisters by Dr. Brian Skotko and Susan Levine, so I went ahead and ordered it for Leah to add to her summer reading. I may have to read it as well and perhaps the two of us will do a book review on it once we’ve both finished reading it!

Dr. Brian Skotko just happens to have a sister who has Down syndrome is one our nation’s top genetic specialists specializing in Down syndrome, and runs the Down syndrome program out of Mass General Hospital. So he knows first hand the connection that Leah and Aiden have with Joey.

I hope you enjoy Leah & Aiden’s first YouTube video just as much as I did making it with them!

A Star is Born, Joey’s Night to Shine

Standard

Last night was Leah & Joey’s 4th grade choir concert. The kids all did awesome and during the day the 4th grade performed for the school as well. I decided to go see that performance as well.

I have to say that Joey OWNED the stage with both performances! Although he didn’t sing, he danced along with the music, bowed before and after each song, and clapped along with the audience. The only bad behavior he truly had was when he was trying to throw his chair off the stage (he didn’t want it there lol!)! Thankfully he only did that during the day time performance and not the evening as well.

I’m so grateful that Joey has such amazing classmates that have been with him since preschool and know him. They all smiles and giggle during their songs at Jojoe as he did his own performance. The choir concerts are truly a day I will remember and cherish forever!

And I’m so proud of Leah for standing next to her brother and occasionally taking his hand to hold and let him have his moment. They both did awesome!

It was Joey’s night to shine and be a star!

Big news! Joey’s newest milestone!

Standard
*this post may contain affiliate links

Whenever Joey passes a new milestone, no matter what it is, I try to celebrate the moment whatever it may be. As a special needs mom, we pray and hope for our children to try or do something new on a daily basis! We relish and hope for those moments. At 11 years old, I pray for those moments each and every day, especially for my child to speak.

Today Joey decided to bless us with a new word! Up until now, my boy has only said, “mom”, “yes”, and “no”. Now we can add his favorite animal to his vocabulary! Although he doesn’t pronounce the “f” in fish, he says “ish” as he does the sign for it as well! Talk about a proud mommy moment!

Jojoe was rewarded with a trip to the pet store to watch the fish and even pick a few news ones out for his tank! We also read One Fish Two Fish Red Fish Blue Fish by Dr. Seuss this afternoon and also cuddled on the couch and took giggle filled selfies together!

I can’t wait to hear what ever Joey’s next word may be!

21 ways being Joey’s mom has changed my life

Standard

image

  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!

 

It Takes a Village…

Standard

Village

The saying, “it takes a village to raise a child” is so incredibly true especially when it comes to raising a child with any intellectual, developmental or physical disability. In the case of raising Joey, along with the support from all of our family and friends, our village began to grow shortly after birth when he started with Birth to Three (aka Early Intervention in some areas of the US). He started out getting weekly physical, and occupational therapy. Then a few months later speech therapy and a teacher joined the group. By the age of 1, these visits were 1-3 a week per therapist!

Along with help from all of his therapists since shortly after birth,  Joey has seen a wide varity of doctors including a pediatrician, geneticist, cardiologist, otolaryngologist (ENT),  gastroenterologist, ophthalmologist, urologist, orthodontist, behaviorist, developmental neuropsychologist, audiologist, and orthopedist (and I’m sure there’s more I’ve forgotten about). But I have to say, I truly can’t complain. There’s parents who have children who have seen way more doctors than my child will ever see….

We are also blessed that our insurance covers home health care for Jojoe. We are so blessed that we’ve had the same CNA coming to our house for the past 3 years, 5 days a week. Since Joey likes to try to sneak off (he’s a wanderer/eloper),he can also destroy a room in 5 seconds flat, and rip off a dirty diaper as soon as I turn my back, she’s a huge help! Without her, I wouldn’t be able to cook dinner or keep the house as clean as I do.

At three years old, Joey left the Birth to Three program and started in preschool through our local school system and has been at a local elementary school in our town since then. Through the public schools, along with this PT, OT, and ST, he also gets help from his regular education teacher, special education teacher, numerous paraprofessionals, teacher’s assistants, art, gym and music teachers.

I’m grateful for all of these people who work hard to provide services and medical care not only for my child but for everyone. They work long hours (some of which they don’t even get paid for) and don’t get nearly enough recognition.

Along with all of the people I’ve mentioned, also part of our village is fellow special needs parents. Without my DS moms, I would be LOST! Especially the ones who have older children that I’ve been able to turn to for advice on parenting a child with Down syndrome. While I was still pregnant with Joey, we joined the Connecticut Down Syndrome Congress. I owe so much to those families who helped to guide me all of these years! If there’s one piece of advice I have for new and expecting families of children who have Down syndrome, contact your local DS group, they are your best and number one ally. I have a list I’m working on of local DS groups around the US you can find here.

Through our church, I’ve met so many wonderful people, including a handful of special needs families who have the same Catholic beliefs as us. Whenever Joey is sick and in the hospital or has a scheduled surgery, it just takes a quick call to our priest to pray for Joey. And the power of prayer works!

And obviously, our families. I have to say, it doesn’t matter how far away they live, family is family and we’ve always been able to depend on our family for anything day and night. The same goes for our friends, especially my group of best friends. I would be LOST without their support!

So, when I say it takes a village to raise a special needs child, I truly mean it. Without the help from everyone over the past 10 1/2 years, Joey wouldn’t be who he is today and I would be one tired momma probably with a lot more grey hairs and wrinkles.

 

I’m back! It’s only been a “few” years…

Standard

For everyone who used to follow me years ago, when I first started up my Raising Joey blog, bear with me, it may take me a while to get back into the swing of things, but I’m going to do my best to share some of my experiences Raising Joey.

Now that Joey is 10, things are starting to change. He’s growing up, he’s not my little baby anymore. Even though he doesn’t talk, he still wants to play with other children his age, in fact, he LOVES his peers. And I love the fact that they love him back. Actually, so many people around our community know him, he’s even been nicknamed “The Mayor.”

Occasionally we get the random child at the park asking, “What’s wrong with him?” or the stares, even from parents. But the best thing I can do as a parent is to help educate people, including children about Joey and other children with Down syndrome and Autism. I recently had a child ask me why Joey doesn’t talk. It’s hard to answer a question like that, do I say, “because God isn’t ready for him to talk,” or “because he’s special and it takes him a little longer to do things like talk.”

OK, I admit, having a non-verbal child, it’s painful at times. Just wanting to hear your child’s voice actually say true, spoken English language words. He does say one word, and that’s “Mom.” When I heard him say it for the first time, I bawled like a baby. It was one day I will NEVER forget.

He does have his grunts, growls, “mom”,  “nnnnn” or “ack” for no, and also the occasional “babababa.” Joey also communicates via sign language and through his iPad. Although he doesn’t have a wide range of signs he does, he still always finds a way to tell us what he wants.

A good example of Joey communicating, when Joey wants to go “bye-bye,” he will either bring us a pair of shoes or he will sign “shoes.” This typically means, he wants to go NOW. Sometimes going on a quick walk down the street makes him happy but other times it takes a car ride to please him.

But then there’s the times, it’s darn near impossible to figure out what he wants or needs. These are the hard days. Or when he’s not acting right or not feeling well, my mind starts trying to figure out what’s wrong: “is he hungry or thirsty, does he not like the TV show or movie he’s watching, did his toy fall behind the couch, is he getting sick, where does he hurt, is it puberty starting?”

There is so much to take into consideration raising a non-verbal, now 10 year old child, but the one thing I keep telling myself is to be patient, that someday he WILL talk more. And until that day comes, I will cherish the grunts, growls, and hearing “mom.”

12063691_10152990386016315_3478504494987043642_n

Joey enjoying Wadsworth Falls in Middlefield, CT