Category Archives: Language barriers

Important Life Lessons Down Syndrome Siblings Taught Us

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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

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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!

The Dreaded P Word…

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puberty

The dreaded “P” word… puberty…  not just dreaded by special needs parents but also parents of typical children as well. As Joey gets older, it’s obvious that things are changing. Emotions, his body, all things I am NOT ready for… but I know is coming…

Joey has always been typically a happy, go lucky kid, UNLESS you take away his beloved iPad. Lately, I’ve noticed he’s becoming more emotional when his shows/movies end or he doesn’t get his way. Even when he gets sleepy, he’s emotional. He cries more easily, his feelings are getting hurt more often. And pretty much every “word” he’s been saying lately is “argh” which means “no.”

And as for body changes, I’m not going to go there… but I’ve noticed things are definitely changing… he’s growing up right before my eyes.

For special needs parents, these changes can be more difficult to handle. I mean, how do you explain to a non-verbal girl that she’s started her monthly cycle? How frightening to look down and not understand what she would be seeing, I know it was scary for me when I started! (One reason I’m honestly grateful Joey is a boy!)

For me, truthfully, I have NO IDEA how I’m going to handle shaving Joey’s face when he starts growing facial hair. I already know it will have to be with an electric razor. But the battle we have to go through to even cut his hair is horrendous! In the past I’ve done it by strapping Joey into a booster seat, and someone holding down his arms and legs, and I use clippers to buzz his hair. Lately I’ve been plugging in the clippers to an extension cord, sitting on the floor behind Joey, wrapping my legs around him and as he rolls around, fighting me, I do my best to cut his hair at the same time. I really need to have someone video it one of these times…So yeah, no idea how I’m going to shave his face…

It’s been very difficult for me to accept this fact, even though he’s 11 years old and my oldest child, I still think of him as my baby at times. Especially since he’s not fully potty trained and still wearing diapers (pull-ups), still does not talk, and is only 55 pounds.

Just this past month, I had to go buy him deodorant for the first time. He isn’t thrilled about the idea of me lifting up his arms and putting onto his armpits, it’s going decently.

I’ve held off buying books Down syndrome, Autism, and puberty  mostly out of fear. Just last night, I went out to dinner with some of my fellow Down syndrome moms and this topic was brought up. We all have children all the same age so we’re all dealing with it at the same time. That is something I’m grateful for, to have moms that I can relate to and throw ideas around about it.

There’s the fear of him growing up. I’m just not ready to accept it, but I’m doing my best…

The fear of him getting bigger than me.  How am I going to be able to pick him up or handle him at the doctors when he’s bigger and stronger than me?

The fear of the unknown: is he going to speak someday or is he always going to be nonverbal?

The fear of if he starts speaking and wants to find someone to love, will he find love?

So tonight, I opened myself an “adult beverage” and pulled up good old trusty Amazon on my laptop and searched “Down syndrome and puberty.” Two different books came up, “Teaching Children with Down Syndrome about Their Bodies, Boundaries, and Sexuality (Topics in Down Syndrome)” by Terri Couwenhoven and “When Young People with Intellectual Disabilities and Autism Hit Puberty: A Parents’ Q&A Guide to Health, Sexuality and Relationships” by Freddy Jackson Brown and Sarah Brown it’s time to break down and order these to add to my Down syndrome.

So I guess it’s time to accept the fact that my baby is growing up whether I like it or not. Life WILL go on, I WILL get used to this fact and hopefully someday Joey will accept us shaving his face or he can grow a beard and be like the guys on Duck Dynasty!

Life’s Expectations…

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691.JPGAs Joey gets older, I’m seeing more and more changes academically. Although he is in the same 4th grade home room as Leah, the academic work has gotten more difficult and the current curriculum can no longer be adapted to Joey’s needs and he spends the majority of the day in the special education room when he is not in specials (gym, art, music, library) or doing one of his jobs.

When we went for the annual open house at the kids’ school the other evening, I have to admit, I was pretty heartbroken when I walked into their classroom and discovered that Joey does not have a desk in that room. This is the first year where he’s not been in a regular classroom. Now, before any of the inclusion parents go bashing our choice, keep in mind, that this is our choice that he’s in the SPED room most of the day.

But it hit me in a way I wasn’t expecting. Life always finds ways to say, “Hey! Things aren’t going the way you expected them to go!” I guess I was just expecting him to have a desk with his name on it in the home room like all the other years just like all the other kids.

When Joey was a baby, before we knew he was going to also have Autism, I wanted more than anything for him to be 100% totally included in the regular mainstream classrooms. Now, I know to meet his needs, this isn’t the case. We have to do what’s best for Joey, NOT what I dreamed for and wanted for him originally.

He needs true one on one support 24/7 in the classroom. He can do basic things like write his name, count to 10, can point to the correct letter, color, shape, etc. A great deal of his school work in now being done on his iPad. He seems to be more eager to work with the iPad than a piece of paper. He’s even started building sentences on his iPad as well!

It just hits home when I see the work Leah is doing compared to Joey and they’re in the same grade. Even though I know I shouldn’t be comparing them. It’s just so hard sometimes not to.

Over the past year, since we’ve allowed the school to pull Jojoe out of the regular ed classroom more, we have noticed some improvements in his socially, behaviorally and even vocally. He’s getting the true one on one attention he needs and for that, I am forever grateful to all the staff at the school who have worked with him.

Just last week I had a meeting with some of his team and the school lunch lady to see if we can start adapting the school lunches to where he’ll eat them and not just the same few foods at home especially since he’s done so good with me eating at some restaurants! So, on Monday, which was cheeseburger day, Joey went through the lunch time and got his burger. The staff put it in the blender to make it mechanical soft and wouldn’t you know, after covering it in ketchup, JOEY ATE HIS FIRST BURGER!!!! Talk about a proud mommy moment when I read the email from his teacher!

Thankfully, Joey is such a “big man on campus.” He’s still very much included in activities around the school. He even has the big task of working in the school’s recycling program where he goes to every class throughout the week and helps to collect the recycling from the rooms. He’s the school custodian’s best buddy!

I look forward to the future for all three of my kids, seeing what each of them can achieve but also at times, I’m terrified for them, especially Joey, not knowing what the future holds for him. But I cannot let my own personal anxiety get in the way, I cannot control what the future holds and need to live each day, one step at a time.

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!

 

Shame on you 50-Cent!

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angry-face-clip-artI was totally appalled to hear about 50 Cent’s online rant he posted about a developmentally disabled gentleman named Andrew who works at Cincinnati International Airport. Andrew has Asperger’s, a hearing deficiency, and social anxiety and this was his first month on the job and his very first job.

50-Cent videoed Andrew walking through the terminal pushing his cleaning cart, not making eye contact with him, and 50 accusing him of being “high on the job” and having dilated eyes and using very harsh language towards him. I’m not going to post the video directly on my blog, but if you wish to watch it, you can see it here on Fox 19, a Cincinnati new station’s website.

Being an Ohio girl and having flown from Cincinnati many times, I’m proud of the airport for hiring Andrew and giving him a chance. And also kudos to all the Cincinnati businesses and restaurants now boycotting 50 Cent’s new vodka line. I hope businesses everywhere will follow in the footsteps of Cincinnati, boycotting 50 Cent and supporting Andrew.

Shame on you 50-Cent, I’m sure your momma is so proud of you….

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

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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.”

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Joey enjoying Wadsworth Falls in Middlefield, CT