Category Archives: milestones

Happy Easter!

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Today Joey had a pretty cool milestone that meant the world to me. As a special needs mom, the littlest thing that your child can do, can be the most amazing thing ever! Especially when they participate and do things “typical” kids do.

Today, Joey gave me the best Easter present ever, he actually hunted his own Easter eggs without any cues from me to pick them up or helping him! Even without tears, he actually was laughing and smiling! He did it all on his own!

There is nothing worse than watching other children having fun, running around picking up Easter eggs and your child not even wanting to participate. I admit, as much as I love watching Leah, Aiden, and other children participate in Easter Egg hunts, deep down it’s always killed me that Joey didn’t want to join in…

This year, he grabbed his basket and took off through the yard picking up his own eggs! Although he may not have gotten as many eggs as Leah & Aiden, and they purposefully skipped over some so Jojoe would have some to get, he had a decent a amount in his basket.

One small step for man, one giant leap for Joey!

 

 

 

Swimming, Splashing, Sensory & Smiles, Part 2

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I wanted to do an update regarding Joey and conquering his sensory issues/fear of swimming pools since my last pool post Swimming, Splashing, Sensory & Smiles. Joey is surprising me each time we go to the community pool (which is 3 or more days a week). Today he walked a little further out in the water by himself and also didn’t flip out when I tried to get him to float on his back.

Words cannot even begin to express how proud I am of him, just for such a simple feat, but for him a huge one.

The first round of swimming lessons finished up last week and the new session started up on Monday. We went ahead and signed all three kids up. All three started out in beginners, but Leah tested out of that class the very first day.

Joey is still watching his typical peers learning how to swim (except now he sits next to Aiden), watching their every moment, except now when they slide into the water and hold onto the wall, he does as well. I’m so proud of all three of my kids and all they’ve done so far this summer!

This is how Joey conquered his fear, by first taking piggyback rides on my back with me walking across the pool in deeper water.

 

My 3 loves

 

Jojoe taking a splash break in the kiddie pool

Swimming, Splashing, Sensory & Smiles

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Jojoe taking a break in the kiddie pool. Splash away buddy!

 

As a parent one of the number one safety skills you want your child to be able to do is swim. There’s times I feel like I’m failing Joey, since at 10 1/2 years old and he cannot swim. He cannot even float. In fact he has HATED big pools up until this summer.

Typically whenever we would visit someone’s house who has a pool, Joey would sit on the edge or my husband would hold him against his chest and walk him around in the water.

Funny enough, he LOVES taking baths and playing kiddie pools. He’ll splash around in those anyday, anytime. It’s when we’re at a larger pool, he goes into sensory overload, gets overwhelmed and flips out.

This Spring I had decided enough was enough. I want my kid to be able to at least float. So I called our town’s recreation department and spoke with the aquatics director and told him my dilemma. He said to sign up Joey for swim lessons through the town and we’ll see how it goes.

For the past 3 weeks, I’ve been at our local community pool with Joey every Monday, Wednesday, and Friday. He’s been in a typical child’s group swimming lesson class. I knew he wouldn’t participate like the other kids but if there’s one thing I’ve learned about Joey, it’s that he’s highly motivated by his peers.

During the swim lesson class, Jojoe has sat on the side of the pool, watching his swim lesson classmates intensely, watching them learning how to swim, mimicking their movements while sitting in the side out of the water. Each lesson, dipping his toes and arms in the water a little further eachtime. On Wednesday after his lesson, I was walking him through the water with him on my back. He was very hesitant the deeper I walked but I kept reassuring him that he was ok and I kept singing, “Just keep swimming.” After a little bit I started unwrapping his legs from around my waist and making him float his legs behind us. I even got him to start kicking his legs while holding onto my shoulders.

Then I took him to the shallowest portion of the pool and showed him his feet could touch. I was having him hold onto the side of the pool and kick his legs!

Turn the clock forward to today’s lesson. Jojoe jumped onto my back in the water after his lesson and we started our walk around the pool with him laughing the entire time! Then we practiced standing in the shallow end. He did it once again! This time, we even added in sitting on the side of the pool and he slid in holding onto my hands!

Talk about a proud Mommy moment! After the first half of his childhood, my boy is finally starting to accept a swimming pool without getting upset! Even though he’s not swimming yet, I’m so incredibly proud of him, It’s a huge step for him to accept something, especially after only 3 weeks!

I can’t wait to see what progress he makes between now and the beginning of the school year at the pool. Even if he’s not swimming by then, at least he’s accepted the pool and fingers crossed next summer will be a little easier!

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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!

 

How about some potatoes with that ketchup?

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Up until last year, going out to eat with Joey consisted of us having to feed Joey at home before we left and then “bribing” him with his iPad to keep him behaved long enough for us to eat our meal. During this time, he’s had a totally awesome personality growth spurt resulting in some new milestones. As a parent of a child with ANY special needs, sometimes, the smallest milestone to one parent, might mean the world to another. I had tried ordering his favorite meal, mashed potatoes (covered in ketchup) at various restaurants with no success up until then.

Finally one day, we had stopped in New York on our way home from a trip, and once again, I ordered him mashed potatoes. When our meals arrived, I made sure we had a nice full bottle of ketchup, looked at him straight in the eyes and told him it was time to eat. Of course, he shook him head no, but I looked at him again and firmly said that it was time to eat.

He reluctantly picked up his spoon, got a spoonful of his potatoes and took a bit! It took all I had not to start bawling tears of joy right then and there! Since then, if we’re at a restaurant and they have mashed potatoes, I know he can be included in our meal as a family. One of his favorites seems to be Cracker Barrel.

Recently, we stopped for dinner at a Cracker Barrel and I got him to eat with me and his siblings. Leah and Aiden beamed with pride as Joey ate his meal with us. The next step, eating solid foods!

Ya know, it’s the small things in life that really count!

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Joey finishing up a juice box after eating his potatoes.

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Leah and Aiden are always so proud of Joey and his milestones. They celebrate just like we do when he does something new and wonderful!