Category Archives: Just Keep Swimming

The Dreaded P Word…

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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!

Detox Baths- Relaxing On a Budget

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One of my favorite evening rituals and ways I get time to myself is taking a nice, long, hot detox bath. I’m not talking I dump some Calgon in the tub, soak and call it a day, I’m talking Epsom salt, baking soda, lavender essence oil and for the really achy days some mint essence oil as well.

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After a rough day when Joey’s been a little extra difficult to handle, I’ve lifted the little dude too much & my back is aching, or even if I have an awful headache or my anxiety is swirling out of control, this I my go-to way of relieving my sore, aching body and mind.

As a mom to three children, taking that time to care for myself is super important as it should be for every mom! If we don’t care for ourselves, how are we supposed to properly take care of our children?!

The awesome thing about the baking soda, Epsom salt mix is that the baking did helps to open up the pores in your skin which then makes it easier for the magnesium in the salt to be absorbed in your body. Not to mention, it’s also awesome for your skin!!!

Another added bonus is that these baths help you to sweat out a little bit of your extra water weight, which is always a good thing!

This is great to people who suffer from migraines, chronic pain, anxiety, depression, and even for individuals on the Autism Spectrum!

The measurement suggested for the detox bath are:

  • 2 cups Baking soda
  • 2 cups Epsom salt
  • Essential oils to your liking, I prefer lavender and mint. Some people add in eucalyptus oil and other favorites as well!

And to make this even better, you can find all the ingredients on Amazon for really cheap!

I wish I had the time and resources to go to the spa or get massages, who am I kidding?! At least by taking the time for myself several times a week, I am able to somewhat relax and the kids know that once they’re in bed and I’m in the tub, it’s my sacred time.

Our New Adventures in Sleep Training

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Joey’s sleep patterns at night have never been good, he wakes up 1 or more times a night and has always ended up in bed between me and my husband using us as his our personal kicking boxing practice bags while he sleeps.

At a recent appointment at our local Down syndrome clinic, when the doctor asked about his sleep, I broke down in tears and explained our battle with Joey at night. He didn’t think Joey has sleep apnea since he had a negative sleep study done five years ago, he thought it was more Joey’s autism and behavioral issues pushing through. The doctor suggested we see the Behavioral Sleep Psychologist at CT Children’s Hospital in the Sleep Center. Up until that appointment, I had no idea such a specialist even existed! Thankfully the wait to see this new doctor was less than 1 month.

At our first appointment at the Sleep Center, I had no idea what to expect. The Behavioral Sleep Psychologist walked in, sat down and started asking questions, and BOOM, my exhausted emotions got the best of me and I started crying as I started explaining our nights with Joey.

Her first suggestion was that we try to start “sleep training” Joey. She feels he never left the “infant stage” of sleeping and that he still wakes up at night just like an infant does. She then started explaining how we’re going to train Joey. She wanted my husband and myself to take turns every other night sleeping in Joey’s room next to his bed and to lock ourselves with him in his room so he couldn’t wander around the house at night and end up in our bed. Every time he was to get up, we were to ignore him and see if he would put himself back to bed and only intervene if he was at risk of hurting himself or being stubborn and not going back to bed.

Of course, directly after the appointment, I went a sporting goods store and bought a cot to put in his room. That evening, I put a hook and latch on the boys’ bedroom door to lock us in at night and explained to Aiden that if he needs to go potty, just to wake us up to let him out at night, lol!

Night one was pretty much a disaster. I don’t think I slept more than 1 hour at a time. I didn’t realize how restless of a sleeper Joey truly was at night! He tosses and turns the entire night! When he got up for the first time around 1:30, boy was he mad when he couldn’t get out of his door! He started yelling and growling then flicked on the lights. I sat up and told him to shut the light off and get back in bed, which surprisingly he did ! It took me a few more times cuing him to go back to sleep but he did for like 30-45 minutes at a time until 6:30am when I finally gave up and unlocked the door. exhausted

The following week, I met again with the Behavioral Sleep Psychologist, and told her how restless he is at night and how Joey keeps ripping off his blankets in frustration. When she said, we need to find a way to keep him from ripping off his blanket and perhaps we should consider another sleep study. We both sat there and brainstormed regarding the blanket situation. Since he doesn’t have the fine/gross motor ability to put his blankets back on his bed, she suggested perhaps some sort of a handle on his comforter and warmer PJs at night to lessen the need for as many blankets.

After the appointment, I went to work where I sat at my desk and pulled up Pinterest on my computer and searched “Autism bedtime” and I found a link for Homemade Stretchy Sensory Sheets! I quickly showed my husband the link and he agreed it was worth a try! So off to Joann Fabrics I went where I bought several yards of “stretchy fabric” and things to make the handles for his comforter out of. A few nights later, one of my dear friends came over and helped me sew Joey’s new sheets. I also had the bright idea to use industrial strength Velcro and attach Joey’s comforter to his bed so he can’t pull it off his bed as easily!

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As for the sleep study, it was a very long, hard night for Joey and myself. Lots of tears were shed by Joey as we struggled to get him hooked up to all the wires but thankfully the study came up negative so we’re not dealing with sleep apnea, it is a behavioral issue.

So far, we’re only a few days into his new sheets so I will be sure to keep everyone updated on our newest adventure/conquest to keep Joey in his own bed at night and eventually be able to sleep back in my own room at night. This is going to be a long process but I know will be worth it later on. Until then, I just need to keep on swimming…

 

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!

 

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!