There, I said it. I'm jealous of all the moms who don't have to worry about therapy and developmental delays. Oh and blood draws, ophthalmology visits, insurance approvals, cardiology visits, Synagis shots, and hearing screenings, just to name a few. I'll admit it, sometimes I see Facebook status updates and think, "I wish that was my biggest problem." I don't do it to minimize my friends' problems. And I definitely know that there are people that have it much harder than I do. But sometimes I just want to be lazy, and sit back and watch her play, or tear up the house, with out questioning if I'm doing enough for her, or if I'm doing the right things to help her succeed. Every parent wants to do their best to help their kids succeed. But since Kennedy has to work extra hard at everything, I feel a lot of extra pressure about it. Now that we have two kids, I definitely don't work with her as much as I used to. And I always worry that it's impacting her progress negatively.
We had a long break in therapy. The move, the holidays, getting things going in a new state. We started Developmental Therapy last week, and both Kennedy and I loved the therapist. Kennedy really showed off to her. This week we started speech. It didn't go so well. I think partially because of the three teeth she's got coming in, she was tired, and truth be told, she just wasn't interested in her toys. This week has also included countless phone calls to the insurance companies, and a Synagis shot. Sometimes it would be nice to sit back and relax, with out worrying about if the doctor's office sent the paperwork to have next month's Synagis shot, or what the speech therapist is going to think about her progress, when she doesn't cooperate during a session.
With that said, I do still know how amazing Kennedy is doing, and I can't believe how far we've come in two years. I don't usually focus on Down syndrome or the delays, and I typically follow the belief that she will do things when she's ready, as she's proven to us already. But every now and then, I have a day where I get frustrated by how hard we have to work for her to be able to do the same thing other kids do so easily. It definitely makes it more rewarding once she does it!
I promise, more photos soon. We have been busy with birthday party plans, appointments, broken sinks, broken couches, and freezing cold weather. I think we need to push it all to the side tomorrow and make a trip to the pool!
Showing posts with label delays. Show all posts
Showing posts with label delays. Show all posts
Tuesday, January 22, 2013
Friday, December 14, 2012
The Downside of Starting Over
I had a few fears when it came to leaving Florida. We finally had a really great therapy team for Kennedy. I was already feeling anxiety over the transition, and we hadn't even set a date to move. I heard mixed things about North Carolina's Early Intervention program.
Fast forward to this week. All of my fears and nightmares have come true. We had Kennedy's evaluation with the Children's Developmental Services Agency. I'm not sure that it could have gone any worse. Kennedy was not in a showing off sort of mood. She was her usual happy bad social self. So when three strangers came in to the house she greeted them and proceeded to run, dance, smile, and play games with them. She explored their "toys" aka tools. None of what they had were actually toys. In fact, they gave her real dimes to put in a real bank. Which she did. But when they handed her a Nerf ball she proceeded to investigate it, squish itt and check out the part that had a bite out of it. She didn't throw the ball. But she did throw her ball 5 minutes later. Little did I know- tat didn't count. The evaluators had to see her complete certain tasks. With THEIR tools only. So, even though she put blocks in her shape sorter, she didn't put THEIR blocks in THEIR cup. She also didn't stack their blocks in the form of a train, and push it across for floor while saying choo choo.
At the end of the evaluation they "freed her" - their terms not mine - to play. She did not succeed at being a circus animal who performed tricks on command. They told me how "severely delayed" she is. I argued that their methods of evaluating would not provide an accurate depiction of my child's abilities. I'm not one to exaggerate things she can do, especially state evaluators. In Florida I usually had to exaggerate the opposite way and minimize what she could do. I KNOW this evaluation was ridiculous and seriously flawed. I know she's not as severely delayed as they make it out to be. But there's something upsetting about three strangers making these comments about your daughter that's very upsetting. I had to hold back tears. We work so hard - she works so hard - and these women minimized everything she did. She turned the pages in the book, one at a time but only used one hand. She walks, but doesn't walk up the stairs. On the plus side, she scored above average in social emotional skills - I'm not surprised, this girl is a social butterfly. She also scored on the higher end of average in self adaptive skills.
The icing on the cake was their recommendation for services. Physical therapy, speech therapy, occupational therapy and developmental therapy every week. Our insurance benefits would max out in 3 months, leaving us with the cost of 100% of the therapy, at roughly $100 per hour.. They justified this by saying we could obviously afford it, based on the home and neighborhood that we live in. I was shocked. I explained that I would NOT be agreeing to their recommendations based on such a flawed evaluation. I made the determination for which therapies we would like Kennedy enrolled in, based on our last trip to Hope Haven and conversations with out therapists before we left Tampa.
I know Kennedy is amazing. She is a super star. I could not be more proud of her. I was especially proud of her when they stood up, and she said, "bye!!!" and proceeded to walk them to the door while waving and saying "bye" over and over again! Apparently I wasn't the only one who had enough of them. They were barely out my front door when I burst into tears. It's days like that when I really wish Kennedy could just be a kid, and not have to deal with things like therapy, evaluations or working so hard to achieve milestones that come so easily for others.
Full Disney recap and photos to come in the next few days. :)
Fast forward to this week. All of my fears and nightmares have come true. We had Kennedy's evaluation with the Children's Developmental Services Agency. I'm not sure that it could have gone any worse. Kennedy was not in a showing off sort of mood. She was her usual happy bad social self. So when three strangers came in to the house she greeted them and proceeded to run, dance, smile, and play games with them. She explored their "toys" aka tools. None of what they had were actually toys. In fact, they gave her real dimes to put in a real bank. Which she did. But when they handed her a Nerf ball she proceeded to investigate it, squish itt and check out the part that had a bite out of it. She didn't throw the ball. But she did throw her ball 5 minutes later. Little did I know- tat didn't count. The evaluators had to see her complete certain tasks. With THEIR tools only. So, even though she put blocks in her shape sorter, she didn't put THEIR blocks in THEIR cup. She also didn't stack their blocks in the form of a train, and push it across for floor while saying choo choo.
At the end of the evaluation they "freed her" - their terms not mine - to play. She did not succeed at being a circus animal who performed tricks on command. They told me how "severely delayed" she is. I argued that their methods of evaluating would not provide an accurate depiction of my child's abilities. I'm not one to exaggerate things she can do, especially state evaluators. In Florida I usually had to exaggerate the opposite way and minimize what she could do. I KNOW this evaluation was ridiculous and seriously flawed. I know she's not as severely delayed as they make it out to be. But there's something upsetting about three strangers making these comments about your daughter that's very upsetting. I had to hold back tears. We work so hard - she works so hard - and these women minimized everything she did. She turned the pages in the book, one at a time but only used one hand. She walks, but doesn't walk up the stairs. On the plus side, she scored above average in social emotional skills - I'm not surprised, this girl is a social butterfly. She also scored on the higher end of average in self adaptive skills.
The icing on the cake was their recommendation for services. Physical therapy, speech therapy, occupational therapy and developmental therapy every week. Our insurance benefits would max out in 3 months, leaving us with the cost of 100% of the therapy, at roughly $100 per hour.. They justified this by saying we could obviously afford it, based on the home and neighborhood that we live in. I was shocked. I explained that I would NOT be agreeing to their recommendations based on such a flawed evaluation. I made the determination for which therapies we would like Kennedy enrolled in, based on our last trip to Hope Haven and conversations with out therapists before we left Tampa.
I know Kennedy is amazing. She is a super star. I could not be more proud of her. I was especially proud of her when they stood up, and she said, "bye!!!" and proceeded to walk them to the door while waving and saying "bye" over and over again! Apparently I wasn't the only one who had enough of them. They were barely out my front door when I burst into tears. It's days like that when I really wish Kennedy could just be a kid, and not have to deal with things like therapy, evaluations or working so hard to achieve milestones that come so easily for others.
Full Disney recap and photos to come in the next few days. :)
Saturday, November 24, 2012
It Will Happen (Video Included)
I think it's safe to say that no matter what you may or may not go through in life, you have yours ups and downs. We've had a lot of major changes going on lately. None of them really related to Down syndrome. In fact, Down syndrome does not play a big part in our life. But some days I do get a little sad about things. Latley I've struggled a bit with Kennedy's speech delay. Everyone is constantly reassuring me how wonderful she is doing, and I have no doubts about that. I'm so incredibly proud of her. But every now and then it hits me a little harder. Especially when I see other kids her age doing things so easily when we work so hard.
Today we made an impromptu trip to the park. Because, well, I'm officially a North Carolinian now and I was thrilled that it was 65 degrees and a "warm" day. So despite my middle of the night shopping trip induced exhaustion, we headed to Kennedy's favorite swing spot. The same park that we had a play date at just over a month ago. The very park that Kennedy took her socks and shoes off at, and refused to walk more than 5 steps. Well, today, she didn't take her shoes off. She spent the majority of the time we were there running around the grass. She was wild. She was happy. She was the social butterfly that she always is. The baby that wouldn't take more than 5 steps on her own outside of her home last month, was now RUNNING through the grass at the park. I remember the days that felt like Kennedy would never walk. And now, just three and a half months after she started standing independently for a few seconds, she's running!!!!!!!!! When she took her first steps, I felt like we were far from having an independent walker. But I think that we can officially call her that! So although some days feel like Kennedy may never really "talk," I just have to keep reminding myself that she will get there.
I should also mention that not only was Kennedy a social butterfly today, she was a stalker. She was chasing after babies, toddlers and older kids, trying to play with their balls and run around with them. Some of the kids were more receptive than others. And none of the parents looked at me like I was crazy, as my toddler ran around kissing strangers. I keep trying to tell Kennedy she should blow kisses to these people, instead of kissing them physically. She isn't convinced. Here's some video.
Today we made an impromptu trip to the park. Because, well, I'm officially a North Carolinian now and I was thrilled that it was 65 degrees and a "warm" day. So despite my middle of the night shopping trip induced exhaustion, we headed to Kennedy's favorite swing spot. The same park that we had a play date at just over a month ago. The very park that Kennedy took her socks and shoes off at, and refused to walk more than 5 steps. Well, today, she didn't take her shoes off. She spent the majority of the time we were there running around the grass. She was wild. She was happy. She was the social butterfly that she always is. The baby that wouldn't take more than 5 steps on her own outside of her home last month, was now RUNNING through the grass at the park. I remember the days that felt like Kennedy would never walk. And now, just three and a half months after she started standing independently for a few seconds, she's running!!!!!!!!! When she took her first steps, I felt like we were far from having an independent walker. But I think that we can officially call her that! So although some days feel like Kennedy may never really "talk," I just have to keep reminding myself that she will get there.
I should also mention that not only was Kennedy a social butterfly today, she was a stalker. She was chasing after babies, toddlers and older kids, trying to play with their balls and run around with them. Some of the kids were more receptive than others. And none of the parents looked at me like I was crazy, as my toddler ran around kissing strangers. I keep trying to tell Kennedy she should blow kisses to these people, instead of kissing them physically. She isn't convinced. Here's some video.
And one more.
Check back tomorrow for more photos. I had computer problems that delayed my blogging tonight, but I have some seriously adorable photos.
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