More Arbaclofen News and Impressions
5 hours ago
Thursday, October 21, 2010
October 21, 1994
16 Years ago today my hubby, William and I had our first date. He stood me up the first time we were supposed to meet but thankfully he showed up for the second date. In honor of our anniversary, we went back to TGIFriday's where we had lunch for the first time together all those years ago. The service was horrible, the food was mediocre but my lunch date was perfect!
Monday, October 11, 2010
Soccer Champions
The LDC United Thunderboltz won their Columbus Day soccer tournament by shutting out all their opponents. It was a great weekend for being at the soccer field especially when you are winning! Mary has the speed, the aggression and oh, and the "Hofmann tongue" (compliments of Grandpa Hofmann). Clearly, it's the tongue that helps her on the field.
The right thing to do isn't aways the easiest
What do you do when you think a friends' child has developmental delays? Do you tell your friend and risk hurting your friendship? Do you remain silent? What do you do? A friend called the other day caught in this same dilemma. She and her friend have children the same age. The other mother has made subtle comments during conversations that her child is not doing things that other kids her age are doing. When the the two children play together the developmental differences are evident. Should the friend say something? A difficult situation to be in for sure.
My answer would be to tell the friend about your concerns right away. In this situation, the mother already has her own concerns about her child and she may be waiting for acknowledgement from you that you see the same differences too. The best thing you can do for your friend is be honest and tell her your concerns. No one wants to be told their child has delays however, you ARE being a good friend by being honest and she will appreciate your honestly in the end. Look at it this way, if your child has juvenile diabetes you wouldn't even think twice about getting medical help. There are a lot of resources available for children with developmental delays. The key is getting intensive help at an early age. I never believed that my children's potential was defined by their diagnosis. While I don't know what the future holds for my children I will push them to always succeed just as I would do if they didn't have a diagnosis.
When my son Jacob was 16 months old, my parents came to us and told us they thought something was not right with Jacob. He should be talking. He should be trying to walk. He should be doing more things for his age. I remember feeling heartbroken. How could my parents say this to us? We were first time parents and our son was just perfect! We said something to our pediatrician who told us not to worry that boys were "late bloomers" and everything would be okay. Give Jacob time he said. He'll catch up. Once the seed was planted my husband and I began to question Jacob's development more and more. We have a pediatrician telling us not to worry and parents who raised 11 kids telling us something just wasn't right. So, we ignored the pediatrician and scheduled a developmental evaluation for Jacob. I remember going into the evaluation thinking that Jacob only had a speech delay and that after a year or so of therapy we'd be back on track and we'd drop the speech therapy and things would be "back to normal." Lo and behold, we were hit with the news that Jacob had significant global delays (a Fragile X diagnosis came 6 months later). We would not be dropping the speech therapy. In fact, we'd be starting a lot of therapies and we wouldn't be dropping them anytime soon. When I look back I certainly appreciate my parents for saying something to us because Jacob was able to start receiving early intervention therapies at a very young age and these therapies really made a difference for him. I'm sure they didn't want to tell us their concerns about Jacob but in the end it was absolutely the right thing to do.
If you find yourself in a similar situation here is my list of Do's and Don'ts.
Do sit down with your friend and tell her your concerns. It will be a very difficult discussion, and don't be surprised if you get a negative reaction, she might be quite angry and hurt but those emotions will eventually fade.
Do let her know that you are having this conversation out of love and wanting the best for the child.
Do your own research and compile information to give to your friend.
Don't just tell her "I think your child is delayed" and that's all. Get a list of agencies to call from help. Print out information on early intervention or different therapies. A simple developmental checklist would be perfect too. Identifying early warning signs in development
Don't force your friend to get help. Don't pressure her. Perhaps just the seed you plant will be enough and the information you provide will be enough for her.
Do be there as a support. No one wants to be told their child has a disability. If indeed the child is diagnosed with some type of disability your friend will need you more than ever.
This is all quite easy for me to say because I have been in this situation before. Easy for me to say because I have three kids with intellectual disabilities. Easy for me to say because I know the power of early intervention and therapy. To the person who is not immersed in the special needs world the answer is not as simple to see. It would be easy to ignore the problem and pray that the child grows out of it. However, the right answer and the most difficult answer is to be honest with your friend. Ask any person with a child with developmental delays and every single time they will tell you they wished had gotten help for their child at a young age that they wished they would have seen the red flags earlier. So, I say you have to talk to your friend. I'm sure if the shoe was on the other foot you would want your friend to be honest with you. No matter how you try to approach a situation like this someones feelings will be hurt. Ultimately, it's about what is right for the child.
My answer would be to tell the friend about your concerns right away. In this situation, the mother already has her own concerns about her child and she may be waiting for acknowledgement from you that you see the same differences too. The best thing you can do for your friend is be honest and tell her your concerns. No one wants to be told their child has delays however, you ARE being a good friend by being honest and she will appreciate your honestly in the end. Look at it this way, if your child has juvenile diabetes you wouldn't even think twice about getting medical help. There are a lot of resources available for children with developmental delays. The key is getting intensive help at an early age. I never believed that my children's potential was defined by their diagnosis. While I don't know what the future holds for my children I will push them to always succeed just as I would do if they didn't have a diagnosis.
When my son Jacob was 16 months old, my parents came to us and told us they thought something was not right with Jacob. He should be talking. He should be trying to walk. He should be doing more things for his age. I remember feeling heartbroken. How could my parents say this to us? We were first time parents and our son was just perfect! We said something to our pediatrician who told us not to worry that boys were "late bloomers" and everything would be okay. Give Jacob time he said. He'll catch up. Once the seed was planted my husband and I began to question Jacob's development more and more. We have a pediatrician telling us not to worry and parents who raised 11 kids telling us something just wasn't right. So, we ignored the pediatrician and scheduled a developmental evaluation for Jacob. I remember going into the evaluation thinking that Jacob only had a speech delay and that after a year or so of therapy we'd be back on track and we'd drop the speech therapy and things would be "back to normal." Lo and behold, we were hit with the news that Jacob had significant global delays (a Fragile X diagnosis came 6 months later). We would not be dropping the speech therapy. In fact, we'd be starting a lot of therapies and we wouldn't be dropping them anytime soon. When I look back I certainly appreciate my parents for saying something to us because Jacob was able to start receiving early intervention therapies at a very young age and these therapies really made a difference for him. I'm sure they didn't want to tell us their concerns about Jacob but in the end it was absolutely the right thing to do.
If you find yourself in a similar situation here is my list of Do's and Don'ts.
Do sit down with your friend and tell her your concerns. It will be a very difficult discussion, and don't be surprised if you get a negative reaction, she might be quite angry and hurt but those emotions will eventually fade.
Do let her know that you are having this conversation out of love and wanting the best for the child.
Do your own research and compile information to give to your friend.
Don't just tell her "I think your child is delayed" and that's all. Get a list of agencies to call from help. Print out information on early intervention or different therapies. A simple developmental checklist would be perfect too. Identifying early warning signs in development
Don't force your friend to get help. Don't pressure her. Perhaps just the seed you plant will be enough and the information you provide will be enough for her.
Do be there as a support. No one wants to be told their child has a disability. If indeed the child is diagnosed with some type of disability your friend will need you more than ever.
This is all quite easy for me to say because I have been in this situation before. Easy for me to say because I have three kids with intellectual disabilities. Easy for me to say because I know the power of early intervention and therapy. To the person who is not immersed in the special needs world the answer is not as simple to see. It would be easy to ignore the problem and pray that the child grows out of it. However, the right answer and the most difficult answer is to be honest with your friend. Ask any person with a child with developmental delays and every single time they will tell you they wished had gotten help for their child at a young age that they wished they would have seen the red flags earlier. So, I say you have to talk to your friend. I'm sure if the shoe was on the other foot you would want your friend to be honest with you. No matter how you try to approach a situation like this someones feelings will be hurt. Ultimately, it's about what is right for the child.
Sunday, October 3, 2010
The Inspiration for "The Luckiest"
It's probably a good time to share the video behind the inspiration for my blog.
And here's a little history....In 1999, Jacob and Sophia were diagnosed with Fragile X Syndrome. Jacob was 2 and Sophia was 6 months old. The following year, we established our own non-profit called, Champions for Children. Since 1999, we have donated over $100,000 to local and National charities through our fundraising. Not bad considering our core fundraising committee consists of 5 only people!
The video below was created in 2005 to help raise awareness of Fragile X Syndrome. It is a very powerful video. Thanks to a lot of passionate parents out there bringing a name and face to Fragile X, there will be a day when people will not ask, "what is fragile x?" There will be a day when people simply understand.
Enjoy the video and grab your Kleenexes.
And here's a little history....In 1999, Jacob and Sophia were diagnosed with Fragile X Syndrome. Jacob was 2 and Sophia was 6 months old. The following year, we established our own non-profit called, Champions for Children. Since 1999, we have donated over $100,000 to local and National charities through our fundraising. Not bad considering our core fundraising committee consists of 5 only people!
The video below was created in 2005 to help raise awareness of Fragile X Syndrome. It is a very powerful video. Thanks to a lot of passionate parents out there bringing a name and face to Fragile X, there will be a day when people will not ask, "what is fragile x?" There will be a day when people simply understand.
Enjoy the video and grab your Kleenexes.
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