Dear Kendall,
Today I watched a 13 year old and her mom. She was a few inches shorter than her mom, they spent time chatting and walking. I thought about if she looked more like her mom or dad. I watched their interactions. For a few seconds I had what if's running through my mind. What if you were not born with a rare chromosome disorder, how tall would you be, what would you look like, what would you be experiencing in 8th grade that you aren't right now? What if, what if, what if. Those thoughts could tear me apart if I let them and they have in the past. However, rather than in years past where I would get stuck on the what if's, I quickly changed my thoughts. I thought about how far you've come, how you talk after years of not talking and it's understandable, and I thought about how great your laugh is. How you still throw one hand over your face when you laugh really hard. I look at all the amazing lessons you have taught our family and friends in life. Look at how you see the world, full of love and kindness, never hate. What if you were a "typical" kid? What if? Who would your brothers be if you were "typical"? Would they understand compassion and have the empathy that they have now? Would they take the time that they do to help others? Would they know how to help their sister when she needs it? Would I have the empathy and understanding of others that I have because of having you in my life? Would I be able to look at the world through your eyes if I had a "typical" daughter? Would I see the world with the same love that you do if it weren't for you? No. No way.
I am smarter because of you. Wiser because of you. More accepting, patient(most of the time), and caring because of you. I've lived a lifetime in almost 13 short years because of you. Because of you I'm resilient. I get down but I don't stay down, not for long. I come back. Yep, I keep coming back. I come back better and stronger because of you and I will continue to do so. You inspire me. You make me speak my mind. You have forced me to advocate, not just for you but for myself and my life. You have taught me to talk about my feelings more, to express myself, to share what it's like to raise you. You are one of the best lessons I've ever had in life and I think what a shame others don't get to learn the lessons that you have taught me. You made me a mama but the non "typical" you made me a better mama then I ever would have been if I didn't have you. I saw another girl and mom walking today, I compared lives for a moment but I didn't get stuck in that moment. Rather, I was able to think about all the moments we have had because of you that in turn have made us all better and stronger. I don't know anything different and after almost 13 years I can say I don't want to know anything different. Thank you for being one of the greatest teachers in my life. You are small but mighty and very very loved. I sure hope you know that.
Love,
Mom
Saturday, September 3, 2016
Friday, May 6, 2016
What made me a mom?
Giving birth to a baby girl at age 29 technically made me a mom right away but I think over time I became a mom. I think every mom "becomes" differently. Some may feel it the minute they get a positive pregnancy test, some may feel it the moment their baby is born and laid on their chest or put in their arms and others, like me, may take time, more time to "become" a mom. I'll never in my entire life forget the moment Kendall was born. The only words I heard around 2:14am early Monday morning were "you have a really small baby" and then the room went DEAD silent, everyone cleared out and went to the NICU, everyone but my OBGYN and me. Thinking about it to this day gives me the chills(and not the good chills).
I didn't get to hold her right away, the first diaper I changed of hers were with my hands through an incubator while I was shaking and sobbing, I didn't bond with her right away, I think mostly out of pure fear. That fear that keeps you protected and safe in case something bad happens and trust me when I say most everyone thought and feared the worst. When I finally held her she had an IV in her head and tubes, there were so many tubes, they were everywhere. I didn't know what I was doing. In fact, my OBGYN thought I was so in shock that he had to talk me into going to see her in the NICU. Not every mother just becomes.
I kept holding her, feeding her, changing her, and holding her some more feeling so unnatural and so NOT at ease. I didn't feel like a mom. I felt scared and in shock. But I held her, fed her, changed her and held her some more. Pictures were taken, I smiled but I was so sad and scared. I never expected to have a child with special needs. I didn't know how to be a mom let alone one to a child like Kendall. I held her, fed her, changed her and held her some more. Dan did the same, he was much better at it. It came naturally to him. On day 2 I had to leave the hospital while Kendall had to stay. I went home with this feeling of just no longer being pregnant but I didn't feel like a mom. I stayed at the hospital as much as I could when I was released, holding her, feeding her, changing her and holding her some more. Each day a baby step forward and on day 6 she was allowed to come home. I still didn't feel like a mom. I felt like a Dr/Therapist in training and slowly became my own version of that with Kendall by my side but still not feeling like a mom and definitely not a good mom. The first year, day in and day out, I held her, fed her, changed her, and held her some more while attending hundreds of Drs and therapy appointments. With every feeding, every changing, every cuddle it slowly became more natural.
My entire world had changed and very differently than that of my other friends with newborns. Hold her, feed her, change her and hold her some more. 2 months in she smiled, 4 months in she sat up, 2.5 years in and she finally walked. Many surgeries and therapies later over the years and then one day things shifted....I now knew I was a mom, a mom different than any other mom I knew but also a mom who was very similar to every other mom I knew. I felt like a mom, I was confident in being a mom and I knew I would do anything in the world for Miss K. It wasn't what I expected but overtime I became and Kendall forced me to become and changed me to the core. I was still far from the perfect mom(there's no such thing as a perfect mom or person by the way) but I changed for the better because of her. I felt confident in caring for her and giving her what she needed. I stopped worrying about what her future life would look like and most importantly (and this happened really early on) I threw out all the parenting books and let my gut figure it out. AND it has never proven me wrong with any of my kids to this day.
I write this because with Mother's Day around the corner some may be ashamed to admit they didn't feel like they became a mom right when their baby was put in their arms but it doesn't mean you won't become a fantastic one in time, and as long as you become in your own time frame and that baby is loved, you are doing a fantastic job. Don't ever forget it. It's the hardest job on earth, being a parent, so give yourself some slack and know you are just doing the best you can. Becoming a mom is different for everyone. When you feel it, it's pretty darn amazing.
Giving birth to a baby girl at age 29 technically made me a mom right away but I think over time I became a mom. I think every mom "becomes" differently. Some may feel it the minute they get a positive pregnancy test, some may feel it the moment their baby is born and laid on their chest or put in their arms and others, like me, may take time, more time to "become" a mom. I'll never in my entire life forget the moment Kendall was born. The only words I heard around 2:14am early Monday morning were "you have a really small baby" and then the room went DEAD silent, everyone cleared out and went to the NICU, everyone but my OBGYN and me. Thinking about it to this day gives me the chills(and not the good chills).
I didn't get to hold her right away, the first diaper I changed of hers were with my hands through an incubator while I was shaking and sobbing, I didn't bond with her right away, I think mostly out of pure fear. That fear that keeps you protected and safe in case something bad happens and trust me when I say most everyone thought and feared the worst. When I finally held her she had an IV in her head and tubes, there were so many tubes, they were everywhere. I didn't know what I was doing. In fact, my OBGYN thought I was so in shock that he had to talk me into going to see her in the NICU. Not every mother just becomes.
I kept holding her, feeding her, changing her, and holding her some more feeling so unnatural and so NOT at ease. I didn't feel like a mom. I felt scared and in shock. But I held her, fed her, changed her and held her some more. Pictures were taken, I smiled but I was so sad and scared. I never expected to have a child with special needs. I didn't know how to be a mom let alone one to a child like Kendall. I held her, fed her, changed her and held her some more. Dan did the same, he was much better at it. It came naturally to him. On day 2 I had to leave the hospital while Kendall had to stay. I went home with this feeling of just no longer being pregnant but I didn't feel like a mom. I stayed at the hospital as much as I could when I was released, holding her, feeding her, changing her and holding her some more. Each day a baby step forward and on day 6 she was allowed to come home. I still didn't feel like a mom. I felt like a Dr/Therapist in training and slowly became my own version of that with Kendall by my side but still not feeling like a mom and definitely not a good mom. The first year, day in and day out, I held her, fed her, changed her, and held her some more while attending hundreds of Drs and therapy appointments. With every feeding, every changing, every cuddle it slowly became more natural.
My entire world had changed and very differently than that of my other friends with newborns. Hold her, feed her, change her and hold her some more. 2 months in she smiled, 4 months in she sat up, 2.5 years in and she finally walked. Many surgeries and therapies later over the years and then one day things shifted....I now knew I was a mom, a mom different than any other mom I knew but also a mom who was very similar to every other mom I knew. I felt like a mom, I was confident in being a mom and I knew I would do anything in the world for Miss K. It wasn't what I expected but overtime I became and Kendall forced me to become and changed me to the core. I was still far from the perfect mom(there's no such thing as a perfect mom or person by the way) but I changed for the better because of her. I felt confident in caring for her and giving her what she needed. I stopped worrying about what her future life would look like and most importantly (and this happened really early on) I threw out all the parenting books and let my gut figure it out. AND it has never proven me wrong with any of my kids to this day.
I write this because with Mother's Day around the corner some may be ashamed to admit they didn't feel like they became a mom right when their baby was put in their arms but it doesn't mean you won't become a fantastic one in time, and as long as you become in your own time frame and that baby is loved, you are doing a fantastic job. Don't ever forget it. It's the hardest job on earth, being a parent, so give yourself some slack and know you are just doing the best you can. Becoming a mom is different for everyone. When you feel it, it's pretty darn amazing.
Sunday, November 1, 2015
Gaining Independence!!
I always do my best to be honest when I write about my experiences when it comes to raising Kendall. That can include all sorts of emotions from very low lows, sadness and frustration to happiness, joy and being in complete awe of her and her accomplishments. I try to keep it real in hopes that all can feel what it's like to raise a child with special needs through my writing. It's been quite the ride if you've known Kendall since she was born or even if you've followed some of the things I've written here about her. She turned 12 on September 22 and is now in 7th grade. Sometimes I look at her and think why does it feel like it takes so long for her to really understand things and other times, like this past week, I look at her and see just how much she's grown and how much independence she has gained. I mean my biggest goal for her in life is to become as independent, happy and confident as possible. It's going to look different than that of a typical kid but I don't care how it looks or how she gets there, I just want to see it happen and I know it will take longer. I'm ok with that. And from the start, I've always said the best part about Kendall is her heart and how caring and loving she is. That's her best quality in my opinion.
Here are a few recent highlights/brags because she deserves recognition just like the rest of us do. Earlier this week we got a letter from her middle school saying she had been selected for an award by her teacher for modeling her schools "Bronco" attitude, specifically modeling "Good judgement". "Students with good judgement show concern for fairness and the welfare involved, make careful decisions, possess freedom from preconceptions and biases". If you ask me, that's pretty cool, especially that last part. Those things are not easy to teach to a typical 7th grader, specifically one with special needs, yet here she is getting this award this week. It's a moment worth celebrating for sure!
As Halloween approached earlier this week she was quite excited. She was a princess pirate and LOVES to get dressed up.
This year we went trick or treating with a big pack of boys from the neighborhood and a couple of Brady's friends. She use to tire quickly walking around and we use to have to walk with her to each door encouraging her to say or even sign trick or treat and use her thank you's. This year she didn't wear out, she kept up with the boys and confidently went to each door as we stood back, really far back actually. She said Trick or Treat clearly and confidently and used her thank you's every time. As I stood back from afar all I could think of was the first probably 5+ years of life when all I could do was wonder when/if/what she would accomplish in life and I remember so clearly how stressful that was. And here she was now not missing a beat, doing this all on her own with a little help from her amazing brothers and their friends. I know she's teaching her brothers a lot about life, including empathy and compassion and I sure hope their friends are learning from her as well. I think they are because I witnessed it last night and it warms my heart. It may not sound like much to people with typical 12 year old kids but last night was a big step for her and her independence....huge actually. Amazing and I was so proud of her.
Finally tonight as Dan was cooking dinner, I look over and she's setting the table. I'm not sure if he asked her to or not but she's happily doing it and doing it correctly. Placemats were set, then forks with napkins, she asked me if we needed spoons(we didn't), she put cups out and filled them with water without spilling. Then laid the plates out(don't judge our paper plates ;). And again, I sat there and thought about all the things people said she may never do. Here she is proving them wrong. Being independent and happily helping us out. Of course I had to take pics and document it:
Finally, and I wish I had pics of this or video of it but she has some pretty active brothers in all kinds of sports throughout the year. She loves watching them play and this season in soccer when Chase scored one of his goals she jumped up and ran to me yelling Go "BOO BOO BEAR"(his nickname) she was so excited for him and immediately asked me if she could go hug him. When Chase tested for his purple belt and 3.5 hours later passed she went up to him and gave him the biggest hug and kiss on the cheek that I've ever seen, it was completely spontaneous and so very sweet. She cheers for Brady in soccer when he's playing goalie or on the field just as much. She's not perfect, no one is, but this is one strong, amazing and loving girl! I'm so proud and lucky to be her mama. I'm thankful for her and I'm loving watching her grow into a more independent young woman, even if day to day it can feel like such baby steps until weeks like this one where it all starts to come together. Amazing, just completely amazing. I can't wait to watch her continue to grow and amaze everyone out there as much as she amazes me. Parenting a child with special needs is not for the faint of heart but as I've said time after time, she's teaching me more in life than anyone else ever has and for that I'm very grateful! She's my hero in so many ways, so much stronger than I'll ever be.
https://www.youtube.com/watch?v=WEPB76o2KXw
We could hide away in daylight
We go undercover, wait out the sun
Got a secret side in plain sight
Where the streets are empty, that's where we run
Everyday people do everyday things but I
Can't be one of them
I know you hear me now, we are a different kind
We can do anything
We could be heroes
We could be heroes, me and you
We could be heroes
We could be heroes, me and you
We could be
Anybody's got the power
They don't see it cause they don't understand
Spin around and round for hours
You and me, we got the world in our hands
Everyday people do everyday things but I
Can't be one of them
I know you hear me now, we are a different kind
We can do anything
We could be heroes
We could be heroes, me and you
We could be heroes
We could be heroes, me and you
We could be
We could be heroes
We could be heroes
Me and you
We could be
All we're looking for is love and a little light
Love and a little light
(We could be)
All we're looking for is love and a little light
Love and a little light
We could be heroes
We could be heroes
Me and you
We could be
I always do my best to be honest when I write about my experiences when it comes to raising Kendall. That can include all sorts of emotions from very low lows, sadness and frustration to happiness, joy and being in complete awe of her and her accomplishments. I try to keep it real in hopes that all can feel what it's like to raise a child with special needs through my writing. It's been quite the ride if you've known Kendall since she was born or even if you've followed some of the things I've written here about her. She turned 12 on September 22 and is now in 7th grade. Sometimes I look at her and think why does it feel like it takes so long for her to really understand things and other times, like this past week, I look at her and see just how much she's grown and how much independence she has gained. I mean my biggest goal for her in life is to become as independent, happy and confident as possible. It's going to look different than that of a typical kid but I don't care how it looks or how she gets there, I just want to see it happen and I know it will take longer. I'm ok with that. And from the start, I've always said the best part about Kendall is her heart and how caring and loving she is. That's her best quality in my opinion.
Here are a few recent highlights/brags because she deserves recognition just like the rest of us do. Earlier this week we got a letter from her middle school saying she had been selected for an award by her teacher for modeling her schools "Bronco" attitude, specifically modeling "Good judgement". "Students with good judgement show concern for fairness and the welfare involved, make careful decisions, possess freedom from preconceptions and biases". If you ask me, that's pretty cool, especially that last part. Those things are not easy to teach to a typical 7th grader, specifically one with special needs, yet here she is getting this award this week. It's a moment worth celebrating for sure!
As Halloween approached earlier this week she was quite excited. She was a princess pirate and LOVES to get dressed up.
This year we went trick or treating with a big pack of boys from the neighborhood and a couple of Brady's friends. She use to tire quickly walking around and we use to have to walk with her to each door encouraging her to say or even sign trick or treat and use her thank you's. This year she didn't wear out, she kept up with the boys and confidently went to each door as we stood back, really far back actually. She said Trick or Treat clearly and confidently and used her thank you's every time. As I stood back from afar all I could think of was the first probably 5+ years of life when all I could do was wonder when/if/what she would accomplish in life and I remember so clearly how stressful that was. And here she was now not missing a beat, doing this all on her own with a little help from her amazing brothers and their friends. I know she's teaching her brothers a lot about life, including empathy and compassion and I sure hope their friends are learning from her as well. I think they are because I witnessed it last night and it warms my heart. It may not sound like much to people with typical 12 year old kids but last night was a big step for her and her independence....huge actually. Amazing and I was so proud of her.
Finally tonight as Dan was cooking dinner, I look over and she's setting the table. I'm not sure if he asked her to or not but she's happily doing it and doing it correctly. Placemats were set, then forks with napkins, she asked me if we needed spoons(we didn't), she put cups out and filled them with water without spilling. Then laid the plates out(don't judge our paper plates ;). And again, I sat there and thought about all the things people said she may never do. Here she is proving them wrong. Being independent and happily helping us out. Of course I had to take pics and document it:
Finally, and I wish I had pics of this or video of it but she has some pretty active brothers in all kinds of sports throughout the year. She loves watching them play and this season in soccer when Chase scored one of his goals she jumped up and ran to me yelling Go "BOO BOO BEAR"(his nickname) she was so excited for him and immediately asked me if she could go hug him. When Chase tested for his purple belt and 3.5 hours later passed she went up to him and gave him the biggest hug and kiss on the cheek that I've ever seen, it was completely spontaneous and so very sweet. She cheers for Brady in soccer when he's playing goalie or on the field just as much. She's not perfect, no one is, but this is one strong, amazing and loving girl! I'm so proud and lucky to be her mama. I'm thankful for her and I'm loving watching her grow into a more independent young woman, even if day to day it can feel like such baby steps until weeks like this one where it all starts to come together. Amazing, just completely amazing. I can't wait to watch her continue to grow and amaze everyone out there as much as she amazes me. Parenting a child with special needs is not for the faint of heart but as I've said time after time, she's teaching me more in life than anyone else ever has and for that I'm very grateful! She's my hero in so many ways, so much stronger than I'll ever be.
https://www.youtube.com/watch?v=WEPB76o2KXw
We could hide away in daylight
We go undercover, wait out the sun
Got a secret side in plain sight
Where the streets are empty, that's where we run
Everyday people do everyday things but I
Can't be one of them
I know you hear me now, we are a different kind
We can do anything
We could be heroes
We could be heroes, me and you
We could be heroes
We could be heroes, me and you
We could be
Anybody's got the power
They don't see it cause they don't understand
Spin around and round for hours
You and me, we got the world in our hands
Everyday people do everyday things but I
Can't be one of them
I know you hear me now, we are a different kind
We can do anything
We could be heroes
We could be heroes, me and you
We could be heroes
We could be heroes, me and you
We could be
We could be heroes
We could be heroes
Me and you
We could be
All we're looking for is love and a little light
Love and a little light
(We could be)
All we're looking for is love and a little light
Love and a little light
We could be heroes
We could be heroes
Me and you
We could be
Tuesday, August 25, 2015
The Dark(er) Side Of Me
Sometimes in life my world becomes gray and NOTHING seems to go right. You name it and it's likely wrong, off or not fair. Even the littlest things seem to bother me. I think things like why is this happening to me and not anyone else, when will it all get better etc. Usually this happens to me around Kendall's IEP or her birthday, there are often triggers. Even though I know there are triggers I still almost NEVER see it coming. It sort of feels like the joy is sucked right out of me or I've fallen and I can't get up. Or if I do get up, it's like the weight of 10,000 pounds is attached to my feet while I'm trying to get up. It feels like I just can't breathe, like life is way way way too hard, like things can't get worse. And when I'm surrounded by happy people at this time, I can hardly sit and listen to their happiness which in turn makes me feel like a SHITTY friend. My anxiety sky rockets and it's all I can do to get through each hour of each day. It's anxiety combined with some SITUATIONAL depression. Different things trigger it and usually it lasts a few days or weeks but this time it lasted months. When this happens, I have a hard time telling anyone about it which is STUPID because it's really when I need the most support. So now I'm writing about it because if you know me at all you know I write when I'm upset. I try to be honest, raw and not hide how I feel in all my interactions but this, THIS is hard to talk about while it's happening. In the end, I know I ALWAYS get up. There's no not getting up, not with 3 kids, not with a child with special needs. I won't let that happen. I'm strong enough, even in my weakest moments, to know that at the very least I can fake it until I make it, during that time it's hard to breath but I keep on keeping on.
At some point when all of this is going on people notice. Thankfully, my friends and family notice. I mean I'm usually social and overall pretty happy the majority of the time. So my friends and family do their best to help me feel better for which I'm eternally grateful. Sometimes it works and is just what I need but not this time. This time it didn't help enough and I just kept hearing myself tell my brain the same story about how awful I was feeling and how hard my life was. This is when I know/knew it's time to get back to therapy. I've been in and out of therapy since I was in my 20's and it's saved me. Today, she called BS on some things I said and also talked to me about how to stop obsessive negative thoughts or obsessive unhealthy thoughts. In 50 minutes she made me realize that it's not all that bad, that there is a lot of good and the bad parts can be worked on. Nothing is ever black, white or permanent. I feel 100 times better than I did at 2pm today and I am hopeful that my grayness continues to go away little by little, bit by bit. I know it will, it always does and then I grow and feel stronger and am able to talk about it. Maybe the fact that I'm writing about it already means it's getting better because I'm actually admitting it out loud here and now. Life is hard and challenging on so many different levels(marriage, kids, work whatever). I don't want to be the person that pretends it's not. I want to be the person that deals with the crap life brings and becomes stronger for it so here I sit and write. Today I finally feel a little bit stronger(I definitely tend to reference a lot of country songs on this blog ;) ) and a lot more grateful for all the things I have.
If you feel this way, get help. Don't feel any shame in seeing a good therapist. Don't be afraid to really work on yourself. It's scary, you'll hate hearing the therapist call you out on your own shit because she's right and it's painful to hear/recognize but it's the best gift I've given myself. I'm still a big work in progress at the ripe ol' age of 41. Here's to a healthy self, to a very healthy me all around...mentally and physically. Peace out.
Sometimes in life my world becomes gray and NOTHING seems to go right. You name it and it's likely wrong, off or not fair. Even the littlest things seem to bother me. I think things like why is this happening to me and not anyone else, when will it all get better etc. Usually this happens to me around Kendall's IEP or her birthday, there are often triggers. Even though I know there are triggers I still almost NEVER see it coming. It sort of feels like the joy is sucked right out of me or I've fallen and I can't get up. Or if I do get up, it's like the weight of 10,000 pounds is attached to my feet while I'm trying to get up. It feels like I just can't breathe, like life is way way way too hard, like things can't get worse. And when I'm surrounded by happy people at this time, I can hardly sit and listen to their happiness which in turn makes me feel like a SHITTY friend. My anxiety sky rockets and it's all I can do to get through each hour of each day. It's anxiety combined with some SITUATIONAL depression. Different things trigger it and usually it lasts a few days or weeks but this time it lasted months. When this happens, I have a hard time telling anyone about it which is STUPID because it's really when I need the most support. So now I'm writing about it because if you know me at all you know I write when I'm upset. I try to be honest, raw and not hide how I feel in all my interactions but this, THIS is hard to talk about while it's happening. In the end, I know I ALWAYS get up. There's no not getting up, not with 3 kids, not with a child with special needs. I won't let that happen. I'm strong enough, even in my weakest moments, to know that at the very least I can fake it until I make it, during that time it's hard to breath but I keep on keeping on.
At some point when all of this is going on people notice. Thankfully, my friends and family notice. I mean I'm usually social and overall pretty happy the majority of the time. So my friends and family do their best to help me feel better for which I'm eternally grateful. Sometimes it works and is just what I need but not this time. This time it didn't help enough and I just kept hearing myself tell my brain the same story about how awful I was feeling and how hard my life was. This is when I know/knew it's time to get back to therapy. I've been in and out of therapy since I was in my 20's and it's saved me. Today, she called BS on some things I said and also talked to me about how to stop obsessive negative thoughts or obsessive unhealthy thoughts. In 50 minutes she made me realize that it's not all that bad, that there is a lot of good and the bad parts can be worked on. Nothing is ever black, white or permanent. I feel 100 times better than I did at 2pm today and I am hopeful that my grayness continues to go away little by little, bit by bit. I know it will, it always does and then I grow and feel stronger and am able to talk about it. Maybe the fact that I'm writing about it already means it's getting better because I'm actually admitting it out loud here and now. Life is hard and challenging on so many different levels(marriage, kids, work whatever). I don't want to be the person that pretends it's not. I want to be the person that deals with the crap life brings and becomes stronger for it so here I sit and write. Today I finally feel a little bit stronger(I definitely tend to reference a lot of country songs on this blog ;) ) and a lot more grateful for all the things I have.
If you feel this way, get help. Don't feel any shame in seeing a good therapist. Don't be afraid to really work on yourself. It's scary, you'll hate hearing the therapist call you out on your own shit because she's right and it's painful to hear/recognize but it's the best gift I've given myself. I'm still a big work in progress at the ripe ol' age of 41. Here's to a healthy self, to a very healthy me all around...mentally and physically. Peace out.
Tuesday, April 28, 2015
The IEP(and how it feels for me personally)
Every year I rant on Facebook about how much I dread Kendall's IEP. Often, in response, some people will tell me to be thankful for them or thankful for the team of people that Kendall has behind her and her IEP. So, before I start this I want to assure everyone that I am thankful. It took months and months for the school to hire a teacher this year but in the end they hired a great one. One that understands IEP's from a teachers perspective and from a parents perspective because she has a child with an IEP. I am grateful for her OT, Speech teacher, adaptive PE teacher(he's so great), the school psychologist(she was the only one who got up to get me kleenex when the tears started to fall) and everyone else that helps Kendall on a daily basis. I am grateful for IEP's. I just wish they could be administered differently so that they really get a COMPLETE picture of the child. Ok, now that's out of the way.
Picture sitting at a table with all of the following people: Regular Ed teacher, resource specialist teacher, special ed teacher, principal, OT, speech, deaf and hard of hearing teacher, adaptive PE teacher and the kicker..... the school psychologist(pysc just come once every 3 years and this year she was there). All sitting with their laptops and 25-30+ page long IEP's. Each individual take turns going over the tests they have done with Kendall. Each test she takes then tells us where she is equivalent to a "typical" child and what level she is functioning at. The ENTIRE YEARS work that they have done with her is summed up based off different tests they do with her just to complete the IEP. So, for example, she could say throw a ball 7ft into a target 10 times in a row but if on testing day(for the IEP) she only makes it 1/10 times that is what goes in the IEP and then the report comes back "very low functioning" age level equivalent of say a 3.5 year old or whatever. Same with site word tests, math tests, things related to speech, phonetics, comprehension, language, fine motor skills, can she cut a circle? A square? Can she write a K? Can she recognize upper case and lower case letters? Does she recognize basic signs in life like stop signs, danger signs? All of that plus more, so much more. Then the school psychologist chimes in about observing her and her findings and it goes on and on and on. All of this is happening while I(and Dan) sit there listening and staring at the papers that just constantly say over and over how far behind she is but they just keep going over test after test. It's like a hard punch to the gut every single time they give the results. Look, I've been told a time or two I'm pretty darn strong both mentally and physically and I could likely take some punches but this is NON STOP for almost 2 hours. And the entire time I am thinking, these tests do NOT define Kendall. Why is this all based on stupid tests? Then some of the teachers start to admit this as well but I feel like they are saying it mainly because they see me start to cry(which normally I don't do in IEP's but today it just happened). Without my tears, I think only a few of them would have remembered that they are talking about my child and this IEP process is PERSONAL not robotic. Tests do NOT define someone.
Then once they tell us the results of all these tests they move into setting goals for her for next year and give their reasoning behind the goals. We either agree or not to these goals. This is the easy part and goes by rather quickly. It's much less painful than the first part. Then it's pretty much over.
For a short while some do start to talk about and recognize Kendall's big heart, how she's always happy and happy to see them and always willing to "do the work". Some say she's even starting to get more competitive in things they do(I'll thank her competitive brothers for that). Now these, these are the parts that truly matter to me. Her heart, her smile, how kind she is, how friendly she is....why can't they measure that? For Kendall, those are her strengths and they aren't tied into all these tests that the entire IEP is based upon. Academics are never going to be where she excels but there are so many other areas that are more important for her to excel at and I just wish they could focus more on them. I could care less if I ever hear another one of her academic tests results again in my life. I do understand the importance of academics but not for Kendall. For her, it's all about practical life skills from here on out. Let's focus on realistic and achievable goals for her so that she can be as independent and confident as possible as she continues to grow up. Let's also recognize her strengths because in my mind she's got what way too many "typical" kids are missing these days...that big ol' happy loving heart. THE END.
Every year I rant on Facebook about how much I dread Kendall's IEP. Often, in response, some people will tell me to be thankful for them or thankful for the team of people that Kendall has behind her and her IEP. So, before I start this I want to assure everyone that I am thankful. It took months and months for the school to hire a teacher this year but in the end they hired a great one. One that understands IEP's from a teachers perspective and from a parents perspective because she has a child with an IEP. I am grateful for her OT, Speech teacher, adaptive PE teacher(he's so great), the school psychologist(she was the only one who got up to get me kleenex when the tears started to fall) and everyone else that helps Kendall on a daily basis. I am grateful for IEP's. I just wish they could be administered differently so that they really get a COMPLETE picture of the child. Ok, now that's out of the way.
Picture sitting at a table with all of the following people: Regular Ed teacher, resource specialist teacher, special ed teacher, principal, OT, speech, deaf and hard of hearing teacher, adaptive PE teacher and the kicker..... the school psychologist(pysc just come once every 3 years and this year she was there). All sitting with their laptops and 25-30+ page long IEP's. Each individual take turns going over the tests they have done with Kendall. Each test she takes then tells us where she is equivalent to a "typical" child and what level she is functioning at. The ENTIRE YEARS work that they have done with her is summed up based off different tests they do with her just to complete the IEP. So, for example, she could say throw a ball 7ft into a target 10 times in a row but if on testing day(for the IEP) she only makes it 1/10 times that is what goes in the IEP and then the report comes back "very low functioning" age level equivalent of say a 3.5 year old or whatever. Same with site word tests, math tests, things related to speech, phonetics, comprehension, language, fine motor skills, can she cut a circle? A square? Can she write a K? Can she recognize upper case and lower case letters? Does she recognize basic signs in life like stop signs, danger signs? All of that plus more, so much more. Then the school psychologist chimes in about observing her and her findings and it goes on and on and on. All of this is happening while I(and Dan) sit there listening and staring at the papers that just constantly say over and over how far behind she is but they just keep going over test after test. It's like a hard punch to the gut every single time they give the results. Look, I've been told a time or two I'm pretty darn strong both mentally and physically and I could likely take some punches but this is NON STOP for almost 2 hours. And the entire time I am thinking, these tests do NOT define Kendall. Why is this all based on stupid tests? Then some of the teachers start to admit this as well but I feel like they are saying it mainly because they see me start to cry(which normally I don't do in IEP's but today it just happened). Without my tears, I think only a few of them would have remembered that they are talking about my child and this IEP process is PERSONAL not robotic. Tests do NOT define someone.
Then once they tell us the results of all these tests they move into setting goals for her for next year and give their reasoning behind the goals. We either agree or not to these goals. This is the easy part and goes by rather quickly. It's much less painful than the first part. Then it's pretty much over.
For a short while some do start to talk about and recognize Kendall's big heart, how she's always happy and happy to see them and always willing to "do the work". Some say she's even starting to get more competitive in things they do(I'll thank her competitive brothers for that). Now these, these are the parts that truly matter to me. Her heart, her smile, how kind she is, how friendly she is....why can't they measure that? For Kendall, those are her strengths and they aren't tied into all these tests that the entire IEP is based upon. Academics are never going to be where she excels but there are so many other areas that are more important for her to excel at and I just wish they could focus more on them. I could care less if I ever hear another one of her academic tests results again in my life. I do understand the importance of academics but not for Kendall. For her, it's all about practical life skills from here on out. Let's focus on realistic and achievable goals for her so that she can be as independent and confident as possible as she continues to grow up. Let's also recognize her strengths because in my mind she's got what way too many "typical" kids are missing these days...that big ol' happy loving heart. THE END.
Thursday, January 1, 2015
Random Christmas Kindness
I posted this on Facebook not too long ago but I wanted to leave it here as well so I remember how kind people can really be :)
At Target with Kendall and an older man is in line behind us. He says Hi to Kendall she says Hi back and smiles. He asks "How are you?". She replies "Good". He then tells her Merry Christmas and she says it right back. Clear as day. I can't tell you how many years she has practiced this exact type of conversation in class with her teachers/classmates. Everything that came out of her mouth was so clear and so appropriate to this little conversation. I'm sliding my red card through and he looks at her and says "do you have a piggy bank?". She answers "yes". He then proceeds to pull $2 from his wallet and I must have looked shocked because he asks me if it's ok to give it to her so she can put it in her piggy bank. I said yes and thanked him about a gazillion times and we left. If he only knew Kendall's whole story and what an amazing act of kindness towards her this was. Sometimes I feel like the Grinch with a small heart but as I got in the car ............."And what happened then? Well, in Whoville they say that the Grinch's small heart grew THREE sizes that day. And then the true meaning of Christmas came through, and the Grinch found the strength of ten Grinches plus two.". #RandomChristmaskindessrocks
I posted this on Facebook not too long ago but I wanted to leave it here as well so I remember how kind people can really be :)
At Target with Kendall and an older man is in line behind us. He says Hi to Kendall she says Hi back and smiles. He asks "How are you?". She replies "Good". He then tells her Merry Christmas and she says it right back. Clear as day. I can't tell you how many years she has practiced this exact type of conversation in class with her teachers/classmates. Everything that came out of her mouth was so clear and so appropriate to this little conversation. I'm sliding my red card through and he looks at her and says "do you have a piggy bank?". She answers "yes". He then proceeds to pull $2 from his wallet and I must have looked shocked because he asks me if it's ok to give it to her so she can put it in her piggy bank. I said yes and thanked him about a gazillion times and we left. If he only knew Kendall's whole story and what an amazing act of kindness towards her this was. Sometimes I feel like the Grinch with a small heart but as I got in the car ............."And what happened then? Well, in Whoville they say that the Grinch's small heart grew THREE sizes that day. And then the true meaning of Christmas came through, and the Grinch found the strength of ten Grinches plus two.". #RandomChristmaskindessrocks
Tuesday, September 23, 2014
Eleven
It happened, Kendall turned 11. I love that she loves her birthday and she totally deserves to be celebrated in a big way every.single.year! She's come so very far and is loved by so many people. I'm so lucky to have her in my life. That being said her birthdays are hard on me. They always have been and I feel extremely guilty about it. This birthday has been especially hard and I never saw it coming(actually I rarely ever see it coming). Here's what the past 5 days looked like, it's a little example as to why it can be hard. A little side note, I actually have a hard time sharing all of this. It makes me feel completely vulnerable, whether 1 person reads this(being Dan) or 50 people read it....either way I feel the same amount of vulnerability. At the same time, I share it in hopes that someone, some day may be able to relate or maybe it can help someone who is just starting out on a similar journey with their own child with special needs.
4 days before her birthday, I was celebrating our wedding anniversary at a Martina McBride concert. As she sang "In My Daughters Eyes" with just the piano, I found myself crying. Dan likes to say sobbing but that just wasn't true ;). Even he said the song gave him goosebumps. If you've never heard the song before you can hear it here: http://www.youtube.com/watch?v=eLS0Y40WwlA. If you listen to it you can probably see why it could make parents of a girl(s) a bit emotional. I'm just glad she didn't sing God's Will because that would have made me a complete sobbing mess. That can be found here: http://www.youtube.com/watch?v=YCRrrP0EhPc. I left the concert happy but the song was weighing on my mind because it's always been my song about Kendall ever since she was little.
The next day which was Friday, I was driving to bootcamp and I found myself doing something I rarely do anymore.....thinking about what kids Kendall's age can do and that led me to thinking about what Kendall should or could be doing at age 11. It's a bad place for my mind to be. It was like all these thoughts just snuck up on me and now I was sitting there feeling frozen. It felt like she was just born and I am finding out the news about her(which was all very unexpected), wondering what is going to become of her life and mine. I don't even have the words to describe how hard the first 4 years of her life were, filled with lots of surgeries and therapy and me trying to take it all in. Trying to come to terms with letting go of a lot of dreams that I had for her was and still can be one of the most painful things I've ever done in my life. It's a huge loss, like Welcome To Holland states " and the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss."
While at bootcamp, I was just trying to get through the class. In between sets of things we were running around the building and I couldn't breathe. I mean I had to stop and walk slowly and convince myself not to gasp for air while holding tears back. It felt like I was in the midst of a panic attack. That run is easy for me after all these years(the class is not) but one time around that church is 1/10 of a mile and I must have done it HUNDREDS of times but I just couldn't get it together very well. My friend noticed right away something was wrong when we were warming up but my response was "nothing" because if I would have let it all out at that moment the ugly cry would have started and I didn't want to interrupt the class. So I trudged through just trying to breathe and when I realize it's not working I tell my friend(and hold it together a little bit) why I'm sad and then I start to feel a little bit of relief and make it through class WHEW.
That same afternoon we met with Kendall's case worker from the Regional Center. We currently receive respite services from them but they need to update their info every so often. After about an hour of meeting with the case worker she told us that Kendall now qualifies for MediCal under a special provision. I just heard the words MediCal and thought great she'll have secondary insurance now. She then went on to explain that under this provision, once she has her MediCal card, we are eligible to apply for something called IHSS(In home support services). Basically, someone comes out to evaluate Kendall and if we qualify we would be eligible to have someone come into our house and do things like help clean, meal prep, laundry, help watch Kendall to keep her safe, take her to drs appts and other things as well. The kicker of this is that if we qualify, Dan or I(or both depending on how many hours we qualify for) would get paid to take care of Kendall. It's not a lot of money but it would be very beneficial to our family and it's all things we've already been doing for 11 years. I wanted to cry happy tears because I'm so thankful that there is more support out there for families like ours. I was thankful for our new case manager for telling us about all this. I don't know why all of the sudden she qualifies for MediCal but I'm glad she does. I hate that finding out any of this info took 11 years and is really difficult to do on your own but happy it exists regardless.
So, we celebrate her all weekend long because why wouldn't we? She's been such an amazing gift and 11 is a big milestone. Last night after she goes to bed I grab the MediCal paperwork and realize that the provision she qualifies under is called Institutional Deeming. Immediately my heart sank just based off the wording of the provision. What does it mean? From what I have read it means to provide health care clients the ability to remain at home or in the community rather than be in an institutionalized setting. Let that sink in for a minute. My heart breaks some more. One would NEVER want their kids to qualify for MediCal under this provision. While I'm grateful it exists my entire self is just sad. As I sat at karate tonight, I told a friend a little bit about how I've been feeling and she says "it's ok to just cry, be sad, it is sad" and those were such comforting words. No "it could be worse", no "it will be ok"....just seriously the most peaceful and comforting words ever. Thank you Kate, I'm going to do just that for now.
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About Me
- Courtney Powers-Graff
- Married mom of 3 not so little ones anymore but they still keep me grinning and giggling(most of the time). Kendall, age 12, Brady age 8 almost 9 and "baby" Chase who is 7. I have been married for 14.5 years to Dan Graff, who I think is the best dad ever to our kids. He certainly makes me grin and giggle to this very day. I have spent my non mom career working in recruiting on and off over the years recruiting Software Engineers. Other than my kids my most favorite thing to do in the entire word is ride horses followed by Kung Fu, where I earned my purple belt last year. I have been riding since I was 8 years old, with some time off here and there but I always go back to it. As Winston Churchill said, "There is something about the outside of a horse that is good for the inside of a man"(or woman in this case)!