Not too long ago, I wrote a post called Secrets to being a Supermom, but I'll be the first to admit that I am FAR from being a "supermom" (actually, I'm far from being a "super-anything" these days) and I find myself getting more and more bogged down by all the stuff we're trying to accomplish with the Princess and the Pope, our house, work, etc... (The list goes on, but you get the point). I'm probably the worst and following my own advice!
So, if you're a mom, what's your secret to staying sane? How do you keep from "jumping off the deep end"? What tricks do you have for getting through a tough day? Please comment! We will all benefit!
Wednesday, March 28, 2012
Friday, March 23, 2012
A trailblazer?...maybe...
Today, the Princess and the Pope had the entire day off from school. It was an "in-service day" and while the Princess had plenty of activities to keep her occupied, the story is much different for the Pope. Fortunately, we found the Birchtree Academy...a daycare and preschool. I won't tell you that our initiation at Birchtree was perfect. Last summer, when we found the place, everything seemed fine. We went for a couple of visits... the staff was great. The place was great. A very "home like" atmosphere... loving staff... a safe environment. Although the daycare was full of neuro-typical kids, everyone seemed comfortable... they embraced the Pope... but for some reason, the Friday before the Pope was scheduled to have his first day at Birchtree, we received a phone call. It was the owner. The news was not good. "We feel the Pope may be too high of a liability... his visual impairment, plus his developmental delay...well, you know..." I didn't need to hear any more of the message. Mike was on the phone with the owner within hours. He asked all the right legal questions. Whether he scared them, enlightened them, or just convinced them to give the Pope a try is none of my concern... the Pope started Birchtree Academy that following Monday and he's loved it ever since!
Today, due to the in-service day, we planned for a day at Birchtree for the Pope. He loves it there, and he's a different kid when he spends the day there! They love him and I think he really loves and appreciates them back! So today, when I picked up the Pope he was on the playground, he was playing with another lad. I noticed a small girl sitting, playing in the mulch. I couldn't take my eyes off her. She was adorable, but somehow, "different". Her quirks in the mulch, her mannerisms, her protruding tongue told me immediately, she also had special needs. I smiled... and for a moment I felt like a trailblazer. Pope gave this school and the staff the confidence to handle kids with special needs and he opened the door for others... Thanks Birchtree, for seeing the light!
Today, due to the in-service day, we planned for a day at Birchtree for the Pope. He loves it there, and he's a different kid when he spends the day there! They love him and I think he really loves and appreciates them back! So today, when I picked up the Pope he was on the playground, he was playing with another lad. I noticed a small girl sitting, playing in the mulch. I couldn't take my eyes off her. She was adorable, but somehow, "different". Her quirks in the mulch, her mannerisms, her protruding tongue told me immediately, she also had special needs. I smiled... and for a moment I felt like a trailblazer. Pope gave this school and the staff the confidence to handle kids with special needs and he opened the door for others... Thanks Birchtree, for seeing the light!
Tuesday, March 20, 2012
On being Pope
Pope is an interesting kid. His TVI describes him as "an onion... we've just got to keep peeling back the layers." I think she's probably right.
In a lot of ways, Pope is like many other 4 year old boys. He likes to climb and run and swim. He enjoys being tickled and loves cars and trucks. He enjoys exploring new places and taking things apart that he should not, like the tv remotes. He loves electronics and can work the iPad better than Mike and I can. He loves to eat and is especially fond of such kid delicacies as macaroni and cheese, chicken fingers and cereal. But he also loves mussels in red sauce. He enjoys Sesame street and especially adores Ernie. He has a wicked sense of humor and a love and interest in music that is well beyond his years.
But in many other ways, Pope is not like a typical 4 year old child. He is essentially non-verbal. He has a handful of words and can say the entire alphabet and count to at least 50, but he cannot hold even a simple conversation. He cannot answer questions like "How do you feel?" or "What would like for breakfast?" He's hit or miss with "yes or no" questions. He doesn't engage other children or adults, and rarely engages us, and even then, it's usually only when he's frustrated with a task. He doesn't point to things or ask us to watch him do something. He doesn't ask for bites of our food or sips of our drinks. When he's excited, he flaps his hands or pats them against his thighs. He still loves to closely watch his own fingers wave in the air. He spins... in a lot of ways. He spins himself, wheels, toys... anything that spins, he will spin it. His recall is improving. There was a time when he wouldn't come to us no matter what we did. Now he comes when called back, some of the time. He's in special education preschool this year and will be again next year. He loves preschool. He made amazing progress this year, but he's had speech therapy 3X/week, physical therapy 3X/week, occupational therapy 3X/week, vision therapy and orientation and mobility instruction... all during his 3 hours per day at preschool, so he doesn't get much in classroom time. He's going to start going all day, two days a week and 1/2 day the other 3 days a week. I think that will be good for him.
This is a boy who was lost a year ago. A year ago, his day was spent rocking, flapping his hands and repeating "Eee, Arr, Eee, Arr" over and over again. He walked with trepidation. Now he walks with confidence, exploring his environment and, if the mood hits him right, he runs!
A year ago he was barely able to finger feed himself and he would only drink from a soft tipped sippie, similar to a bottle. Today he is a master of the fork and spook and can drink from a cup with a straw. We are currently working on the open top cup. A year ago, he was so lost, it was like no one else in "his" world existed. Today he finds others, at least some of the time. We are in awe of the progress he has made. To say he is a special little boy would be an understatement.
In a lot of ways, Pope is like many other 4 year old boys. He likes to climb and run and swim. He enjoys being tickled and loves cars and trucks. He enjoys exploring new places and taking things apart that he should not, like the tv remotes. He loves electronics and can work the iPad better than Mike and I can. He loves to eat and is especially fond of such kid delicacies as macaroni and cheese, chicken fingers and cereal. But he also loves mussels in red sauce. He enjoys Sesame street and especially adores Ernie. He has a wicked sense of humor and a love and interest in music that is well beyond his years.
But in many other ways, Pope is not like a typical 4 year old child. He is essentially non-verbal. He has a handful of words and can say the entire alphabet and count to at least 50, but he cannot hold even a simple conversation. He cannot answer questions like "How do you feel?" or "What would like for breakfast?" He's hit or miss with "yes or no" questions. He doesn't engage other children or adults, and rarely engages us, and even then, it's usually only when he's frustrated with a task. He doesn't point to things or ask us to watch him do something. He doesn't ask for bites of our food or sips of our drinks. When he's excited, he flaps his hands or pats them against his thighs. He still loves to closely watch his own fingers wave in the air. He spins... in a lot of ways. He spins himself, wheels, toys... anything that spins, he will spin it. His recall is improving. There was a time when he wouldn't come to us no matter what we did. Now he comes when called back, some of the time. He's in special education preschool this year and will be again next year. He loves preschool. He made amazing progress this year, but he's had speech therapy 3X/week, physical therapy 3X/week, occupational therapy 3X/week, vision therapy and orientation and mobility instruction... all during his 3 hours per day at preschool, so he doesn't get much in classroom time. He's going to start going all day, two days a week and 1/2 day the other 3 days a week. I think that will be good for him.
This is a boy who was lost a year ago. A year ago, his day was spent rocking, flapping his hands and repeating "Eee, Arr, Eee, Arr" over and over again. He walked with trepidation. Now he walks with confidence, exploring his environment and, if the mood hits him right, he runs!A year ago he was barely able to finger feed himself and he would only drink from a soft tipped sippie, similar to a bottle. Today he is a master of the fork and spook and can drink from a cup with a straw. We are currently working on the open top cup. A year ago, he was so lost, it was like no one else in "his" world existed. Today he finds others, at least some of the time. We are in awe of the progress he has made. To say he is a special little boy would be an understatement.
Wednesday, March 14, 2012
36 hours
The last 36 hours have been an absolute whirlwind and I can honestly say that I am completely EXHAUSTED. Yesterday afternoon, the Pope had an office visit with his ophthalmologist. His doctor is located in the city, so the Pope and I took the train. The weather was gorgeous and it was an excellent opportunity for the Pope to get some serious O&M (orientation and mobility) work done. The train stations have lots of stairs and we have to go in and out through the automatic ticket terminals. Once we got into the city, there were lots of noises and smells and opportunities for the Pope to practice staying on task while using his cane. For a 4-year-old boy, I think he did fairly well. The Pope LOVES to ride on the train and he loves to go into the city. This is the first time I used the trip to the hospital as a training exercise. He did an amazing job with the stairs at the train station. 
When we arrived at the hospital, where the Pope's ophthalmologist is located, we registered. The waiting area, which is huge, was packed. Not a good sign. There were plenty of people who already looked aggravated, also not a good sign. Our appointment was at 2:45 PM, we got in to see the doctor at 4:20 PM. He apologized profusely, and explained that they were doing glaucoma testing all day, which required patients to return several times throughout the day to have their eye pressures tested, and that can really throw off the schedule for anyone who is there for an appointment. It really was the scheduling secretary's fault, not his. In the long run, it doesn't matter... He's the best and the best is worth the wait!
So in the office I found out that the Pope looks into the corner of his eye - strabismus. He also has nystagmus, where his eye involuntarily shakes. When he looks ahead, his eye shakes. To stop it from shaking, to get a better look at things, he turns his eye into the corner toward his nose. The doctor informed me that when the Pope is older, he'll make a measurement and shorten the muscle in the Pope's eye to keep it centered and stop it from shaking. He said doing the surgery now, would be too soon. We left the office at 5:00 PM. On the way home the hospital called to inform me that the Pope's surgery time, the next morning, was scheduled and we needed to be at the hospital surgery center at 6:00 AM.
So this morning we were on the train, again, this time at 5:15 AM. The Pope, who was hungry, because he couldn't eat anything and tired because we got up so early (and we had just switched to daylight savings time, so we all still adjusting) was less enthusiastic about the train ride or trip into the city. It was early, but there are major benefits to being first! You actually go into the operating room right on time! And the Pope was scheduled first because he was not only seeing his ophthalmologist for an EUA (exam under anesthesia), but he had his 1 year check-up with the ocular oncologist. I can hardly believe it's been a year already!
So the news was great all around! The oncologist gave the Pope a clean bill of health! His socket looks terrific and his remaining eye is in great shape. So we are done!
The ophthalmologist reported that his eye pressure is fine, no glaucoma! We can reduce his atropine drops, which he currently takes daily, down to 3 times a week! He gave the Pope a new prescription and the eye glass shop at the hospital said they would swap out the new lens, so we didn't have to buy a whole new pair of glasses! Believe me, I was thrilled! The best part? We don't have to go back to any of the eye doctors for SIX MONTHS! (No, I can't believe it either!)
Around 11:30 AM, I carried a very sleepy boy through the city, down to the train platform and home to his bed. It's been exhausting, but he is so worth it.
Meanwhile, the Princess is sick. While I had the Pope at his eye doctor yesterday, Mike had the Princess at the pediatrician. She's developed a very nasty bronchial cough that sounds like it's coming from deep in chest. She also seems unwell to me. While she doesn't have a fever, she's listless and just not her usual bubbly self. The pediatrician prescribed and albuterol inhaler. I hope it works for and she's feeling better soon.
When we arrived at the hospital, where the Pope's ophthalmologist is located, we registered. The waiting area, which is huge, was packed. Not a good sign. There were plenty of people who already looked aggravated, also not a good sign. Our appointment was at 2:45 PM, we got in to see the doctor at 4:20 PM. He apologized profusely, and explained that they were doing glaucoma testing all day, which required patients to return several times throughout the day to have their eye pressures tested, and that can really throw off the schedule for anyone who is there for an appointment. It really was the scheduling secretary's fault, not his. In the long run, it doesn't matter... He's the best and the best is worth the wait!So in the office I found out that the Pope looks into the corner of his eye - strabismus. He also has nystagmus, where his eye involuntarily shakes. When he looks ahead, his eye shakes. To stop it from shaking, to get a better look at things, he turns his eye into the corner toward his nose. The doctor informed me that when the Pope is older, he'll make a measurement and shorten the muscle in the Pope's eye to keep it centered and stop it from shaking. He said doing the surgery now, would be too soon. We left the office at 5:00 PM. On the way home the hospital called to inform me that the Pope's surgery time, the next morning, was scheduled and we needed to be at the hospital surgery center at 6:00 AM.
So this morning we were on the train, again, this time at 5:15 AM. The Pope, who was hungry, because he couldn't eat anything and tired because we got up so early (and we had just switched to daylight savings time, so we all still adjusting) was less enthusiastic about the train ride or trip into the city. It was early, but there are major benefits to being first! You actually go into the operating room right on time! And the Pope was scheduled first because he was not only seeing his ophthalmologist for an EUA (exam under anesthesia), but he had his 1 year check-up with the ocular oncologist. I can hardly believe it's been a year already!
So the news was great all around! The oncologist gave the Pope a clean bill of health! His socket looks terrific and his remaining eye is in great shape. So we are done!
The ophthalmologist reported that his eye pressure is fine, no glaucoma! We can reduce his atropine drops, which he currently takes daily, down to 3 times a week! He gave the Pope a new prescription and the eye glass shop at the hospital said they would swap out the new lens, so we didn't have to buy a whole new pair of glasses! Believe me, I was thrilled! The best part? We don't have to go back to any of the eye doctors for SIX MONTHS! (No, I can't believe it either!)
Around 11:30 AM, I carried a very sleepy boy through the city, down to the train platform and home to his bed. It's been exhausting, but he is so worth it.
Meanwhile, the Princess is sick. While I had the Pope at his eye doctor yesterday, Mike had the Princess at the pediatrician. She's developed a very nasty bronchial cough that sounds like it's coming from deep in chest. She also seems unwell to me. While she doesn't have a fever, she's listless and just not her usual bubbly self. The pediatrician prescribed and albuterol inhaler. I hope it works for and she's feeling better soon.
Sunday, March 11, 2012
American Girl Fashion Show!
The Princess was selected to model in the American Girl* Fashion Show to Benefit the Ronald McDonald House of Delaware yesterday. We had an amazing day and the Princess did an AMAZING job representing the American Girl Bitty Baby in the fashion show!
At the start of the show, all of the models gave an introduction via a video. The Princess did a spectacular job and was even a "star" on camera!
After lunch, the Princess took her turn, Bitty Baby in hand, on the catwalk! Way to go, Princess! You were fantastic!
Strutting her stuff... with big smiles... all the way!
The Bitty models all took one last walk on the runway! They got a chance to smile and wave to the audience as a group!
The Princess and her BFF on stage after the show... We even talked about them trying out as American Girls Julie and Ivy for nexy year's show... Wouldn't that be cute? You never know!
Friday, March 9, 2012
On becoming "a resource"
I feel like I spent the last year leaning on everyone I know for guidance. I've looked to doctors, therapists, educators, parents and friends for advice on what to do for the Pope and how we can do it better.
Recently, an acquaintance, who has known Mike for a long time, asked me who the Pope's ophthalmologist was and if we liked him and why. I gave her all the details on Dr. Levin and different scenarios and how I felt he was very responsive to our needs, etc. She went on to tell me how she felt her own child's ophthalmologist was disappointing her on many fronts and after the conversation she asked if I had contact information for Dr. Levin. I shared his email address. The following day, she sent me a message and told me that she had sent Dr. Levin an that evening around 5:00 PM and he had replied by 8:00 PM agreeing to see her child as a new patient. She was ecstatic both about his willingness to see her child and his quick response. She then went on to thank me for being such a great resource! Wow. Me? A resource... An opportunity to help someone else out and pay it forward. Great!
Recently, an acquaintance, who has known Mike for a long time, asked me who the Pope's ophthalmologist was and if we liked him and why. I gave her all the details on Dr. Levin and different scenarios and how I felt he was very responsive to our needs, etc. She went on to tell me how she felt her own child's ophthalmologist was disappointing her on many fronts and after the conversation she asked if I had contact information for Dr. Levin. I shared his email address. The following day, she sent me a message and told me that she had sent Dr. Levin an that evening around 5:00 PM and he had replied by 8:00 PM agreeing to see her child as a new patient. She was ecstatic both about his willingness to see her child and his quick response. She then went on to thank me for being such a great resource! Wow. Me? A resource... An opportunity to help someone else out and pay it forward. Great!
Monday, March 5, 2012
What a difference a year makes...
This photo was taken one year ago... today. We had just arrived home from our long our long, long flight from Hong Kong, after 17 days away from our beautiful Princess. Everyone looked tired, including the Princess, who stayed with a school mate while we were gone. She said she had an excellent time.
Apart from all the hugs and kisses the thing I remember most from that day is the Princess' request, over and over again, to help change the Pope's diaper. "Can I help? Can we do it now? Can we?... please? Can we?... NOW!!!" I knew what she was after with such excitement and enthusiasm and curiosity as we unwrapped the diaper I announced, "Okay Princess, you're about to find out what makes boys, boys and girls, girls..." She peered with excitement as I opened his diaper... then the look on her face immediately dropped, "That's IT???" she said with a scowl of disappointment. "That's it." I replied. (Glad she wasn't having this reaction with her first boy friend... he'd be scarred for the rest of his life!) She unenthusiastically helped fetch a clean diaper and that was that. She's had an amazing first year as a new big sister. She's very good at it.
Apart from all the hugs and kisses the thing I remember most from that day is the Princess' request, over and over again, to help change the Pope's diaper. "Can I help? Can we do it now? Can we?... please? Can we?... NOW!!!" I knew what she was after with such excitement and enthusiasm and curiosity as we unwrapped the diaper I announced, "Okay Princess, you're about to find out what makes boys, boys and girls, girls..." She peered with excitement as I opened his diaper... then the look on her face immediately dropped, "That's IT???" she said with a scowl of disappointment. "That's it." I replied. (Glad she wasn't having this reaction with her first boy friend... he'd be scarred for the rest of his life!) She unenthusiastically helped fetch a clean diaper and that was that. She's had an amazing first year as a new big sister. She's very good at it.
Saturday, March 3, 2012
Secrets to being a "Supermom"
So yesterday, after I posted on Facebook about the Pope's awesome time at his first swimming lesson, a terrific friend of mine and mother of triplets (talk about a supermom!) Asked me what my secret was to being a "Supermom"... Supermom?...hardly!
First of all, my "Facebook life" is very different from my "Actual life". I make it a habit to post the good things on Facebook. We're all faced with plenty of our own garbage. We don't need to be dragged down by other people's stuff. So, on my Facebook page, you'll see the one thing that went right during our week and not the ninety-nine other things that did not. ;)
As far as secrets to being a "Supermom"? Well, I don't think they're secrets, really. But here's my top 10 for what gets me through my week.
1.) Pray. Find your higher power and lean on it from time to time. Believe me, it can be very beneficial.
2.) Sleep. Find the time to get some rest. Even if you have to schedule it.
3.) Celebrate the little things. I have a friend who's son is severely disabled. They celebrate "inch-stones" rather than milestones... A lot can be learned from people like her and her family.
4.) Date nights. If you're married, go on regular date nights with your husband. Get a sitter and go out! You need time to reconnect, even if you think you don't.
5.) Don't overload your schedule. (This is one I struggle with A LOT!) Work within your reasonable limits and don't be afraid to say "no" to certain activities, especially if they are volunteer or involve your children. Kids don't need to attend every birthday party and activity they are invited to and you don't need to help out at every event at school or Brownies or soccer.
First of all, my "Facebook life" is very different from my "Actual life". I make it a habit to post the good things on Facebook. We're all faced with plenty of our own garbage. We don't need to be dragged down by other people's stuff. So, on my Facebook page, you'll see the one thing that went right during our week and not the ninety-nine other things that did not. ;)
As far as secrets to being a "Supermom"? Well, I don't think they're secrets, really. But here's my top 10 for what gets me through my week.
1.) Pray. Find your higher power and lean on it from time to time. Believe me, it can be very beneficial.
2.) Sleep. Find the time to get some rest. Even if you have to schedule it.
3.) Celebrate the little things. I have a friend who's son is severely disabled. They celebrate "inch-stones" rather than milestones... A lot can be learned from people like her and her family.
4.) Date nights. If you're married, go on regular date nights with your husband. Get a sitter and go out! You need time to reconnect, even if you think you don't.
5.) Don't overload your schedule. (This is one I struggle with A LOT!) Work within your reasonable limits and don't be afraid to say "no" to certain activities, especially if they are volunteer or involve your children. Kids don't need to attend every birthday party and activity they are invited to and you don't need to help out at every event at school or Brownies or soccer.
6.) Find someone else you can "relate" to... I think this is especially important if you are parenting a child with special needs. There is nothing more gruesome than being with parents of "typicals" when your child is not. There are Facebook groups, Yahoo groups, Church groups, school groups, Special Olympics, Autism Speaks... find something.
7.) Once in a while, have a drink. Please know your limits! I am not trying to create alcoholics, but I do see the fringe benefits of glass of wine, now and then, especially after a hard day.
8.) Ask for help. Don't be afraid to ask for help. You can't possibly do it all and no one expects you to be able to (except maybe yourself!) When you need an extra hand, ask your spouse, friend, neighbor, church member, local teens... you'd be surprised at how many people are willing to help out when you really need it! All you have to do is ask.
9.) Get rid of the "ugly". We all have it... Those who put us down, discourage us, tell us we're worthless or doing the wrong thing. We're "bad parents" or our houses are "slovenly"... Get them out! Whoever they are, family, "friends" acquantances... say goodbye and let them go.
10.) Make some "me time" everyday. If it can only be the 15 minutes before you fall into bed exhaused at the end of the day, make it your time. Have that glass of wine or a cup of tea. Read that book. Do it while your husband is reading bedtime stories and putting the kids to bed. Take a bath. Put on some of that fancy hand cream you received from Aunt Mabel for Christmas. But do something for you... everyday...
That's really it. It's not that difficult once you get into the routine. As a mom, it's easy to put everyone else first. What we don't realize is the toll it takes on us. In all honesty, I'm not a "supermom"... just a regular mom, trying to raise a family and get by, one day at a time.
Thursday, March 1, 2012
First Swimming Lesson
It's no secret that the Pope loves the water. Thanks to Rehab Connection and the NJ Kids Trust Fund, Pope has been afforded the opportunity to take swimming lessons! He was a bit apprehensive at first, but once he got into the water and got going, he absolutely loved it! Way to go Pope! And thanks so much Rehab Connection and South Jersey Kids Trust!
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