Growing up with Oculomotor Apraxia, speech delay, hypotonia and sensory processing disorder.
Tuesday, February 12, 2013
Friendship helps overcome obstacles
So much is going on with Patrick right now that I have tons of posts to write... I just can't seem to find the time to do it! He recently had his 1 year evaluation with the Early Intervention Services from the Infant and Toddler Connection. He also had his 6 month evaluation with the Developmental Pediatrics at the Children's Hospital. Some were good news and some... not so much. Patrick has also increased his Speech therapies to 3 times a month (things aren't going so well in that regard) and he still has his physical therapies once a month, so he is now receiving weekly services.
I hope my husband finds some free time to help me with the kiddos so that I can write all about that. In the meantime, I want to talk about how friendship has been a life saver to our family. Since I became a stay-at-home mom, I wanted to be able to hang out with other stay-at-home moms, and I was so lucky to find a group of moms that met less than 2 miles from my house! I want to dedicate this post to give a shout out to the wonderful moms group at St. Louis Catholic Church. Being part of this group is great in so many ways. Here are a few reasons:
Tuesday, January 29, 2013
My Christmas miracle! (December 2012 Recap)
Happy New Year! (It's still January, so it still counts, right?)
A number of things happened this past December but right now I just want to talk about the most important one: Our baby Robert Louis was born.
On the 23rd, my sister and nephew came from Mexico to spend the holidays with us, and as we went to pick her up from the airport, I posted on my facebook page "On our way to the airport to pick up my sis and nephew!! BTW, no baby yet, due date is tomorrow but doesn't look like is going to happen soon..."
Doesn't look like is going to happen soon?
A number of things happened this past December but right now I just want to talk about the most important one: Our baby Robert Louis was born.
On the 23rd, my sister and nephew came from Mexico to spend the holidays with us, and as we went to pick her up from the airport, I posted on my facebook page "On our way to the airport to pick up my sis and nephew!! BTW, no baby yet, due date is tomorrow but doesn't look like is going to happen soon..."
Doesn't look like is going to happen soon?
Friday, December 14, 2012
Patrick's little brother will be here anytime!
My pregnancy with Patrick was overall good, and as lucky as I could consider myself with that pregnancy, this one has been even better! Both pregnancies have been different from each other, not crazy different, but definitely not the same. I think this baby moves more than Patrick ever did (which isn't so great when you are trying to sleep) but he doesn't get hiccups as Patrick did. With Patrick I had nausea 2+ months, but with this baby I only had nausea 3 days, literally. I feel like baby was telling me "hey, I'm here, you are pregnant!" because once I took the pregnancy test at the third day, the nausea disappeared.
Tuesday, December 4, 2012
November 2012 Recap
Patrick's Birthday Party:
Patrick's birthday is November 24th, which means every year it will fall on Thanksgiving day or close enough. Which means the poor little thing can't have a party on his birthday, so we celebrated Patrick's birthday party the weekend before (17th) at the same place we did last year. It's a Mexican Restaurant near our house that has good food and great service. We had lunch and cake at a private area, and the owner was kind enough to even let us break a pinata, Yay! I love the idea of having pinatas at my children's parties, and I was thrilled that Patrick loved it so much this year! He even cried when his turn was over, so he ended up having like 3 turns. Here is a video of that.
Aside from the cake, he gets a special cupcake just for him. This is the second year... I guess we have started a tradition in our family!
Once at home, he didn't care much to open presents, but his friends Jackie and Charlotte couldn't wait to find out what toys he received, so they helped out.
Of course Patrick loved his gifts once they were out of the boxes.
A weekend with friends:
Jackie and Charlotte's parents live in NJ, so we don't get to see them as frequently as we would like, but when we do, we have a great time. They came to celebrate Patrick's party and it was great for the kids to spend time together. But not only the kids had fun, the dads went to play some golf (and have a few drinks) while the moms watched the kids. When the dads were back, the moms went out to have a nice dinner, while the dads watched the kids and put them to sleep. It was nice to go out without the kids (and husbands), although somehow our chat was mostly about them hehe.
Here are few pictures of the kiddos since they were babies.




Charlotte has now a 4 month old baby brother, Patrick will have a baby brother any day now, and Jackie will have a baby brother or sister in April. We will have a new set of pictures then!
Patrick's actual 2nd Birthday and grandparents visit.
Patrick's grandparents live in Indiana, so we don't get to see them much. This is the 3rd year, however, that Thanksgiving is celebrated at our house with them (we have to thank Patrick for this!) They were here almost a week. Patrick was very shy the first day but he was fine by the next one.
Everyone had good reasons to be tired enough to cook Thanksgiving dinner (I was almost 9 mos pregnant, Tim had been traveling for work and the grandparents had just arrived) so we went out to eat. As a matter of fact, we went out to eat a lot when they were here, many good places around here!
Grandma makes the best cookies ever. Patrick had the cookies for first time and he liked them so much that in one of those moments when nobody was watching him, he climbed on to the dining room table to eat some more!
And they also helped us put the Christmas tree up!
What's new with Patrick?
Patrick had his 2 year appointment with the Pediatrician. He weights now 24lbs, and he is 34 1/2 inches tall. Surprisingly he was scared of the doctor this time. He also doesn't want to be checked because he doesn't want to stay put for more than 2 seconds. He just wants to be out and about all the time. He can climb on anything now -as you could judge by the cookies photo. Considering the things he does now, I can't believe it's been only 2 months since he learned to walk. He has tried to escape from the house a couple of times, and is constantly trying to run away from me at public places.
His dad has been working on house projects, and Patrick is enjoying "helping". It is just too cute to see him spending long periods of time trying to help Tim. One day daddy went to the attic, and Patrick dared to follow behind. Tim had to ask for help and when I came I saw Patrick climbing the ladder half way up to the attic. As I approached, he reached the top. We have no picture of this, please understand it was a very scary, dangerous and crazy moment - no time to look for the camera! He is very curious, and too brave... a little too much I would say. Funny how he is so scared of the doctor but not so much to climb on a tall ladder!
Patrick's birthday is November 24th, which means every year it will fall on Thanksgiving day or close enough. Which means the poor little thing can't have a party on his birthday, so we celebrated Patrick's birthday party the weekend before (17th) at the same place we did last year. It's a Mexican Restaurant near our house that has good food and great service. We had lunch and cake at a private area, and the owner was kind enough to even let us break a pinata, Yay! I love the idea of having pinatas at my children's parties, and I was thrilled that Patrick loved it so much this year! He even cried when his turn was over, so he ended up having like 3 turns. Here is a video of that.
Aside from the cake, he gets a special cupcake just for him. This is the second year... I guess we have started a tradition in our family!
Below, the cupcake from last year... he has grown so much!
Here are a few pics of the party:
A weekend with friends:
Jackie and Charlotte's parents live in NJ, so we don't get to see them as frequently as we would like, but when we do, we have a great time. They came to celebrate Patrick's party and it was great for the kids to spend time together. But not only the kids had fun, the dads went to play some golf (and have a few drinks) while the moms watched the kids. When the dads were back, the moms went out to have a nice dinner, while the dads watched the kids and put them to sleep. It was nice to go out without the kids (and husbands), although somehow our chat was mostly about them hehe.
Here are few pictures of the kiddos since they were babies.




Charlotte has now a 4 month old baby brother, Patrick will have a baby brother any day now, and Jackie will have a baby brother or sister in April. We will have a new set of pictures then!
Patrick's actual 2nd Birthday and grandparents visit.
Patrick's grandparents live in Indiana, so we don't get to see them much. This is the 3rd year, however, that Thanksgiving is celebrated at our house with them (we have to thank Patrick for this!) They were here almost a week. Patrick was very shy the first day but he was fine by the next one.
Everyone had good reasons to be tired enough to cook Thanksgiving dinner (I was almost 9 mos pregnant, Tim had been traveling for work and the grandparents had just arrived) so we went out to eat. As a matter of fact, we went out to eat a lot when they were here, many good places around here!
For Patrick's birthday we had a chocolate cake and we were out shopping. Also, we broke the news to them that Patrick's little brother will be named after the grandpas.
| Good morning! I'm 2 today!! |
Grandma makes the best cookies ever. Patrick had the cookies for first time and he liked them so much that in one of those moments when nobody was watching him, he climbed on to the dining room table to eat some more!
![]() |
| I'm the cookie monster! |
The grandparents enjoyed a tour of Mt. Vernon. Totally worth the visit if you are ever in this area!
And they also helped us put the Christmas tree up!
What's new with Patrick?
Patrick had his 2 year appointment with the Pediatrician. He weights now 24lbs, and he is 34 1/2 inches tall. Surprisingly he was scared of the doctor this time. He also doesn't want to be checked because he doesn't want to stay put for more than 2 seconds. He just wants to be out and about all the time. He can climb on anything now -as you could judge by the cookies photo. Considering the things he does now, I can't believe it's been only 2 months since he learned to walk. He has tried to escape from the house a couple of times, and is constantly trying to run away from me at public places.
Escaping from the house - Wish I had taped from
the very moment he opened the storm door and got out!
His dad has been working on house projects, and Patrick is enjoying "helping". It is just too cute to see him spending long periods of time trying to help Tim. One day daddy went to the attic, and Patrick dared to follow behind. Tim had to ask for help and when I came I saw Patrick climbing the ladder half way up to the attic. As I approached, he reached the top. We have no picture of this, please understand it was a very scary, dangerous and crazy moment - no time to look for the camera! He is very curious, and too brave... a little too much I would say. Funny how he is so scared of the doctor but not so much to climb on a tall ladder!Wednesday, November 28, 2012
Could I have prevented Patrick's health issues?
My husband and I had been married for a year and a half when we found out we were pregnant. I told him the news on his 30th birthday and we couldn't be happier.
When I had my first OB visit, I was asked to fill out a form that had specific questions about my lifestyle and background. Do you smoke? Do you drink? Do you exercise? What's your race? Marital Status? Age? Number of Pregnancies? Miscarriages? And then a long list of illnesses to which I had to write whether we or any member of our families ever had.
When I had my first OB visit, I was asked to fill out a form that had specific questions about my lifestyle and background. Do you smoke? Do you drink? Do you exercise? What's your race? Marital Status? Age? Number of Pregnancies? Miscarriages? And then a long list of illnesses to which I had to write whether we or any member of our families ever had.
Tuesday, November 20, 2012
Raising a child with a disability
Is Patrick a "special needs" child or a child with a disability?
I truly don't know. I guess I could say he has a disability in the eyes, because he can't follow well fast moving objects. I guess I could say he has a disadvantage in his muscles, because they are not as strong as other kids'. I guess I could say he is a special needs child, because, well, he requires some things that other kids don't, like AFO's, and therapies, and constant evaluations and so forth.
But then it just doesn't feel right to compare my son to a child that has some type of syndrome, or severe physical, cognitive, or developmental delay. It's not fair to the other moms of these children to compare what I have to go through to what they have to go through. You see, I have it easy compared to them. And Patrick has it easy compared to those children. He gets to take physical therapies, but just to strengthen his muscles, because he can do physical stuff. And he takes speech therapies, but just to get him up to speed, because he can talk. He needs AFO's for his feet, but just to give him support, because he can walk (and AFOs are like getting orthodontic braces, really) And he has this rare disorder called Oculomotor Apraxia, but, you know, he isn't blind.
So if Patrick falls into a special category, I don't know which one would be the appropriate one. In the meantime, I wanted to share this beautiful explanation I read some time ago of what is to have a child with a disability:
I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this…
When you're going to have a baby, it's like planning a fabulous vacation trip – to Italy. You buy a bunch of guidebooks and make your wonderful plans. The Coliseum, the Michelangelo David, the gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland." "Holland?!" you say. "What do you mean, Holland?" I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy.
But there's been a change in the flight plan. They've landed in Holland and there you must stay. The important thing is that they haven't taken you to some horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place. So you must go out and buy a new guidebook. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around, and you begin to notice that Holland has windmills, Holland has tulips, Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy, and they're all bragging about what a wonderful time they had there. And for the rest of your life you will say, "Yes, that's where I was supposed to go. That's what I had planned."
The pain of that will never, ever, go away, because the loss of that dream is a very significant loss. But if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.
Written by Emily Perl Kingsley
I truly don't know. I guess I could say he has a disability in the eyes, because he can't follow well fast moving objects. I guess I could say he has a disadvantage in his muscles, because they are not as strong as other kids'. I guess I could say he is a special needs child, because, well, he requires some things that other kids don't, like AFO's, and therapies, and constant evaluations and so forth.
But then it just doesn't feel right to compare my son to a child that has some type of syndrome, or severe physical, cognitive, or developmental delay. It's not fair to the other moms of these children to compare what I have to go through to what they have to go through. You see, I have it easy compared to them. And Patrick has it easy compared to those children. He gets to take physical therapies, but just to strengthen his muscles, because he can do physical stuff. And he takes speech therapies, but just to get him up to speed, because he can talk. He needs AFO's for his feet, but just to give him support, because he can walk (and AFOs are like getting orthodontic braces, really) And he has this rare disorder called Oculomotor Apraxia, but, you know, he isn't blind.
So if Patrick falls into a special category, I don't know which one would be the appropriate one. In the meantime, I wanted to share this beautiful explanation I read some time ago of what is to have a child with a disability:
I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this…
When you're going to have a baby, it's like planning a fabulous vacation trip – to Italy. You buy a bunch of guidebooks and make your wonderful plans. The Coliseum, the Michelangelo David, the gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland." "Holland?!" you say. "What do you mean, Holland?" I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy.
But there's been a change in the flight plan. They've landed in Holland and there you must stay. The important thing is that they haven't taken you to some horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place. So you must go out and buy a new guidebook. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around, and you begin to notice that Holland has windmills, Holland has tulips, Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy, and they're all bragging about what a wonderful time they had there. And for the rest of your life you will say, "Yes, that's where I was supposed to go. That's what I had planned."
The pain of that will never, ever, go away, because the loss of that dream is a very significant loss. But if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.
Written by Emily Perl Kingsley
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