On the potty... Day two...

Not much to report about for yesterday. Jonathan is still doing very good when it comes to going on the potty. I still asked him if he had to go potty, but it wasn't every two minutes like it was yesterday, and sometimes he would ask me if I was coming as he went running down the hall, and that was his way of telling me he wanted to do it. There's weren't as many trips to the potty yesterday, but at the same time, there weren't as many accidents. No poops on the potty, but none in the diaper either.



I'm unsure right now if he's going less often because he's learned how to hold it in, or if its because he doesn't really want to be doing this, and this is his way to not use the potty.



On we go towards day three...

Potty Training... Day One...

What an exhausting day!! I'm so glad it's finally coming to a close... oh wait... its only 11:45... AM... *sigh*...

Well the kids are taking their nap, so I figured I could write up the first part, and then finish it tonight after the kids go to bed.

what a long and exhausting day, and it's not even noon yet. Why has it been so exhausting? Well... I started potty training Jonathan (...again). After reading a lot of material online about how to potty train children (and specifically boys) with special needs, I decided to use the no-pants method. Very simply stated... the child being taught to use the potty wears no pants. No diapers; no pull-ups; no nothing...

You can read more about this method here: http://specialchildren.about.com/od/toilettraining/ss/nopantsmethod.htm

The site tells you to only let them wear a large loose t-shirt, and if you have to go out, make it a very short outing, and only let them wear swimming trunks with a mesh lining, and water shoes or flip-flops (all very easily cleaned). Well... Jonathan doesn't normally wear clothes around the house anyway, so he just running around in all his glory, which, apparently to him is just fine as well.

I started this process yesterday, with every diaper change I told him that he would have to use the potty tomorrow, and at first I was met with very stern "no!"s. But as the day progressed, and I kept saying it, his attitude slowly became more willing. This morning, when both kids were up, and I was giving Isabelle a bum change, I cleaned Jonathan up, and didn't put a diaper back on. He wasn't happy about this at first, but I again reminded him that he would have to use the potty, and he was (reluctantly) somewhat okay with this idea.

It started out that every two minutes (no really... every two minutes)... I would ask him if he had to go potty, I did that for the first hour and a half to two hours or so... and sometimes he would say yes, and run to the bathroom, but nothing happened... at first...

We started this journey at 8:00AM...

8:30... 1st try... Nothing... But still clean...

8:55... 2nd try... Nothing... But still clean...

9:15... 3rd try... Nothing... But still clean...

9:30... 4th try... Nothing... But still clean...

9:45... 5th try... Nothing... But still clean...

10:00... 6th try... Nothing... But still clean...

10:25... 7th try... PEE PEE ON THE POTTY... wash hands... get beans...

10:35... 8th try... PEE PEE ON THE POTTY... wash hands... get beans...

10:45... 9th try... PEE PEE ON THE POTTY... wash hands... get beans...

10:55... 10th try... PEE PEE ON THE POTTY... wash hands... get beans...

11:05 Small accident on the couch... went to the potty... and finished peeing in the potty... wash hands... get beans after I explain that it's not nice to pee pee on the couch, but good boy for going pee pee on the potty... (okay... it's possible that he's only going potty to get the beans... but I don't care... he's going potty.)

11:20 Small accident on the floor, but went to the potty as soon as it happened without me telling him to. He sat on the potty and tried to go, but couldn't... washed hands... asked for a bean... and I said no, we get a bean if we go on the potty... he got a little sad but said okay, and came back out to the living room.

11:40... 13th try... One more try before nap time... A few little dribbles, but it was still something, and it was in the potty, and not in the living room... wash hands... get beans...

2:50... Back at it again... WHAT A LONG NAP!! We're back to the potty with a lot less enthusiasm, but we're back nonetheless.

3:20 15th try... nothing... still clean... asked for a bean... mommy said no... got mad... washed hands...

No poops at this point. I thought he was going to go when I put his diaper on for his nap, but nothing. I'm a little worried about his physiological health. :/

4:22 Jonathan's able to go longer without going to the potty, I think the novelty of the jelly beans may have worn off. Jonathan started running down the hallway to the bathroom, and called back for me to come too. He went pee pee in the potty again, washed hands... got beans...

4:40 Jonathan asked to go potty again, and went pee pee on the potty... washed hands... got beans...

5:00 Jonathan asked to go to the washroom again... nothing... but no accidents.

5:15 Jonathan went pee pee in the potty... it was only a dribble, but like I said before... it's better than nothing, and there were no accidents. wash hands... get beans...

5:25 Jonathan went pee pee on the potty again. I'm starting to think maybe the novelty's back when it comes to the jelly beans. Oh well. Still way worth it.

6:20 Jonathan went pee pee on the potty!! washed hands... got beans...

6:35 Jonathan had a little accident, but went pee pee in the potty

6:40 Ugh... Horrible accident... had to tend to Isabelle for a couple seconds, and when I turned around Jonathan was covered in poop from the waist down. When I took him into the bathroom to clean him up, I found that he had pooped right in front of the potty... can't really complain about that, it shows me that my little guy tried. :/

6:45 Jonathan went running down towards the bathroom, so I followed in hot persuit. He pooped in the potty!!! POOPED IN THE POTTY!!! I'm so happy that I can hardly contain myself...

7:40 No accidents since the last time on the potty (he was able to hold it for almost an hour) pee pee in the potty. wash hands... get beans...

Had to run out tonight for errands... so a diaper went on for a little while (although he came home clean) and went pee pee again on the potty before bed. So happy for my little guy. I know not every day will be this easy and for the most part mess-free, but what a great way to start off the potty training!!!

The Most Common Disability You've Never Heard Of...

Well... Today is Fragile X Awareness Day, so I thought I would share with you the top ten things that you should know. (Please keep in mind that I got this list from Mary Beth and Sally from the Michigan LINKS group, and I've changed a little of it to make it more "Canadian". If you would prefer to read the original, let me know, and I can share the information with you.)

The Top Ten Things You Should Know About Fragile X Syndrome

It's genetic

If a woman is a carrier, she has a 50/50 chance of passing it on to any of her children. (1 in 100 - 200 women are carriers.)

If a man is a carrier he will pass it only to his daughter(s), and they will only be carriers. (1 in 800 men are carriers.)

Fragile X Syndrome (FXS) does NOT discriminate. It doesn't care which ethnic group you belong to.

FXS is a spectrum disorder. Symptoms may vary from mild learning disabilities (including shyness and social anxiety) to severe cognitive impairment (mental retardation).

Premature Ovarian Failure, more commonly known as early menopause, is a condition that affects 20-28% of the female FXS carrier population.

Fragile X-Associated Tremor/Ataxia Syndrome (FXTAS), discovered in 2001, is a neurological disorder that can involve tremors, balance irregularities, difficulty walking and dementia which is sadly often misdiagnosed as Parkinson's and/or Alzheimer’s. This condition is present in some older FXS carriers (typically after the age of fifty); usually in males, but FXTAS can affect female carriers as well.

There are many physical traits noted in many people with FXS, but not in all. These are traits which may also be present within the typical population; nothing unique which would necessarily indicate FXS testing is necessary for your child.

When testing for FXS, it is critical that the correct tests are ordered. The FMR1 DNA test is 99% accurate, and the test should typically take about two weeks for results. You can test for Fragile X Syndrome to obtain a diagnosis or to rule it out. If you don't have a correct diagnosis of FXS, then you will never be aware of improved treatments or the cure, when it's found.

Where to go for more information?
www.FragileX.org – The National Fragile X Foundation
www.FRAXA.org – FRAXA Research Foundation
www.LivingWithFragileX.com – Living With Fragile X

An insert I made for our Church Buletin for Fragile X Awareness Day.

A child that doesn't play with toys because he has no imagination. A child that can't tell anyone when he's hurt, or sad, or tired because he doesn't know how to share those feelings. A child that doesn't say "I love you" to anyone... because to him... those are just words; they have no meaning. That child that I'm speaking of... is my child. Jonathan was around a year and a half old when we got his diagnosis of Fragile X Syndrome, which is a genetic developmental disorder. Like so many others, I had never heard of it, let alone the fact that I was the one who could pass it on to him. Despite all of his developmental delays we were always told that he would catch up, and that kids just develope at different speeds. Deep down I knew it was something much more serious than that. 

At two years old, Jonathan wasn't sleeping through the night. His speech was significantly delayed, and his behaviour was very hard to control. Sometimes we would just hate going out into public because of all the anxiety it created for Jonathan. He gets so overwhelmed by noise and people, and sometimes we just weren't able to control him, so we would have to come home.

Jonathan (now age four) is doing much better. His speech is still delayed, but he's improving everyday. His behaviour is still sometimes difficult to control, but we have more good days than bad. You can really tell that he's starting to grow into his own personality. My son is affected by Fragile X Syndrome but I don't have a fragile son. He's full of life... and truly knows the meaning of living each day to its fullest. After all is said and done, I believe I'm one of the luckiest mothers in the world. My son will never know hate. He won't be discriminatory or racist. I won't have to worry about him growing up to be a womanizer. He won't be a bully. He won't be an abuser. Instead he will continue to give kisses and hugs, even when others his age might be embarrassed. Instead he will love everyone he meets unconditionally; and for that, I am thankful. We have great hope for him. He's already taught us so much about life, now we're just trying to tell others about his story by sharing a glimpse into our lives. All we want is for people going through something like this to know that they are never alone.

Credit goes to Mary Beth Langan for doing all the editing!! :) Thank you!!

We Expect Respect

As parents of children with special needs, we deal with a wide variety of disabilities that raise a wide variety of concerns and require a wide variety of accommodations. We do not speak with one voice on many of the things our children specifically need to be safe and secure and included in the life of their community and the wider world. But there's one thing we can all agree on: our children deserve respect.

They are not nuisances. They are not inconvenient. They are not impediments put in your way by troublemaking parents. They have a right to live and to learn and to play and to worship and to dine and to travel and to participate, by virtue of being human beings and citizens of their communities. We recognize that this may not always be easy, and we take responsibility for helping make inclusion happen instead of expecting it to be done for us. But the very first step, always, regardless of the situation, is respect. Respect our children. Respect our families. Or don't expect us to respect you.

What does respect look like? It does not mean acceding to our every demand and accommodating every problem. (Though that would be fine.) It means taking our children's needs seriously, and working in a conscientious way to find an acceptable solution. It means stepping out in front and presenting a coherent and compassionate policy rather than waiting for a problem and reacting defensively. It means treating children with special needs and their families as you would any other customer, any other worshiper, any other taxpayer, any other voter, any other community member. It means not sending out a message that says, "You know, we don't really serve your kind here."

Because there are a lot of "our kind," and we are growing. We have been fragmented by our specific challenges and conflicting needs, but we now resolve to be united by our common expectation of respect. When you place an inflight snack choice above the life of an allergic child, you anger us all. When you care more about rude complaining diners than the family of a child with autism, you eject us all. When you value worshipful silence over compassion for worshipers with disabilities, you wound us all. Whether or not our children share those same disabilities, whether or not we would have made the same decisions as those parents, we still know what lack of respect looks like, and we will recognize it in your actions.

And we will act. We will remember. We will find our voice as a special-needs community, and we will stand together. We will demand respect for our children and our families, and for the adults with disabilities our children will become. You will find us to be fierce advocates. We would rather get respect without fear, but we'll take it any way we can get it. Do the math. And do the right thing.

Best Day Ever!!

It was originally my intention to document my son's days for a whole year. Everything that happened, and I would blog about it at the end of the night. Well... That never happened... It seems that life has gotten away from me, but I'm back, and ready to tell you about our Canada Day!!

On July 1st I decided to go over to a friends house. Our family is really close with their family. The mom (Amy) was my maid of honor, the dad (Dan) was my husband's best man... They are both Jonathan's god parents... we are REALLY close with this family. I turn to her for almost everything. Well they have a daughter (Lauren) that is a year older than Jonathan, and a son (Clayton) who is a year younger than Jonathan.

The kids all play together everytime we go over, but they don't really play TOGETHER... they just all play in the same area... Wondering why? Well... Jonathan doesn't play with other kids, he just plays next to them... I'm not really sure what was different about that day... but I saw Jonathan play WITH them, not just next to them. I saw him give Clayton and Lauren a hug (which was amazing, because he barely hugs mommy and daddy)!! He played with them, and had fun. I saw something so different in him, and for one day he wasn't limited by his Fragile X. It was wonderful. And on top of all that, he listened, and used his manners all day!! ...YAY!!

Our Story...

Hello all,

   So here's a little of our back-story just to get you up-to-date. My husband James and I have been together for almost 6 years. During those years we have been through more trials and tribulations that we ever thought we were going to. We have one son, who was diagnosed with Fragile X syndrome when he was about a year and a half old (he'll be four this summer), and we have a new little bundle of joy, a daughter, who is four months old.

   Our son's diagnosis came as a huge surprise, but then again, I guess it does for most families. My son was around six months old when we realized that he was developing at a slower rate than other kids his age. I understand that all kids develope at a different rate, and kids will do things when they're ready, on the their own schedule, but as a mom, you just know when something's not right. My fears were confirmed when I went into his room one day (he was around a year old) and his vocabulary of around fifty words, all of a sudden went down to nothing. He just didn't talk. Nothing.

  After visits to our family doctor and a referal to a wonderful pediatrician, Jonathan had his blood tested for Fragile X (something I had never heard of before). After learning that the blood work had come back positive for Fragile X, and that I had been the one to give it to him, I went home and the first thing I did was google Fragile X. (Where would we be without google?)

   I came across this WONDERFUL website, with oodles and oodles of information, everything I would ever want to know about this disorder. That was the National Fragile X Foundation. ( www.fragilex.org ) They sent me pamplets, and newsletters, and all kinds of information and referals.

   We were also told about this wonderful facility that was an early intervention program for children with special needs. They set him up with a speach pathologist, physical therapist, and occupational therapist.

  We go through one day at a time, some are good, some aren't as good, but we get through. My family has proven to be stronger than I ever imagined they would have to be.

Day one...

SATURDAY - April 2, 2011

Well, today was quite a day to decide to write a blog...

Let me start off by saying that earlier in the week, I was informed of a Fragile X support group that met very close to us, the first Saturday of every month. Not wanting to wait until next month, we scrambled to try to find someone to watch the kids while we hopped the boarder to Royal Oak. After going through all the normal related avenues, we decided to call our sitter. (She's my son's Sunday school teacher but she's going to college a couple hours north of where we live, and she doesn't always come home on the weekends.) Thankfully, after giving her a call she was coming home, and would be delighted to come watch both of our children. (YAY).

The meeting was wonderful. It was so nice to be able to meet twenty or so other people going through the exact same things that we were going through. It was an experience like no other. I can't wait to get more involved. So there we are... sitting in the middle, and enjoying the conversation, when my husband leans over and shows me his cell phone and asks me if it's our sitter's cell phone. It was.

She was calling to inform us that the fire department was currently airing out our house because our son had thrown some plastic in the oven and turned it on and there was smoke in the house. Everything was fine, but the fire department wanted to speak to one of the home owners to let us know that our babysitter did everything right and that we were lucky to have a sitter like her (which we already knew).

So needless to say, my stomach was in knots until we finally arrived home, but everything was fine, and our sitter even said that she would be willing to come back.

One day at a time...