It's about time! As many of you know this year has not been pleasant with the school system. Summer vacation is a welcomed time in this family. Meetings, Department of Education, School committee, Advocated hundreds of emails, phone calls, letters and conversations... none of which were fun. Who knew being a proactive parent could be such a bad thing when it came to a school. Over the summer the Superintendent of schools will be looking through all their special education classes and finding the right fit for Julia. although nothing is resolved yet we do feel our voice, and the voices of others have started to be heard. I did however assure the Superintendent that I would not be satisfied until all the voices were heard, that appeasing me isn't good enough now, that there is a problem that needs to be fix. So what came of this year? Julia ended up being a blessing to many kids, some of who she will never meet, because she had a need and the need wasn't met mama bear and papa bear stepped in. We stood our ground, said what we needed and went to those that could help. Fighting for what you child needs in a school system is never fun, but at least now the parents in our school will be heard in the upcoming school year... something new thanks to Julia :)
That being said BRING ON SUMMER VACATION!
Thursday, June 14, 2012
Thursday, March 22, 2012
what the kin?
Julia is adopted.....we hear it a lot.... that is how rumors get spread people! just kidding, but really she is not adopted, nor will she ever be. ( it is a little like calling a Chinese person Japanese.)
We are what is known as a kinship family. Julia was family before, she is family now. A kinship family is a family connected by blood in someway. Julia is part of our family, she always will be. We met Julia the day she was born, August 16,2006 she was our niece. One October 28,2009 we became her guardians by the state on New Hampshire. On April 19, 2011 the state of Massachusetts awarded us as Julia's guardians. Legally, we are Julia's guardians.
On February 19,2011 we became "mom and dad" to Julia. Does that mean we adopted her? nope. She has a biological mother and father, she always will, she will always have the last name Billcliff. It makes her who she is, she is Julia Kathleen Billcliff. She will never be Julia Roberts (She is way cooler than her anyway).
13% of the county we live in is part of a kinship family. 78% of those families are grandparents raising grandchildren. Life doesn't come with a manual, it doesn't come in a pretty little package. It comes from experience and the willingness to learn about those around you. The folks at 3 Fales Ave are a kinship, and we are proud of that two different last names is ok... it just means more family and support :)
We are what is known as a kinship family. Julia was family before, she is family now. A kinship family is a family connected by blood in someway. Julia is part of our family, she always will be. We met Julia the day she was born, August 16,2006 she was our niece. One October 28,2009 we became her guardians by the state on New Hampshire. On April 19, 2011 the state of Massachusetts awarded us as Julia's guardians. Legally, we are Julia's guardians.
On February 19,2011 we became "mom and dad" to Julia. Does that mean we adopted her? nope. She has a biological mother and father, she always will, she will always have the last name Billcliff. It makes her who she is, she is Julia Kathleen Billcliff. She will never be Julia Roberts (She is way cooler than her anyway).
13% of the county we live in is part of a kinship family. 78% of those families are grandparents raising grandchildren. Life doesn't come with a manual, it doesn't come in a pretty little package. It comes from experience and the willingness to learn about those around you. The folks at 3 Fales Ave are a kinship, and we are proud of that two different last names is ok... it just means more family and support :)
Monday, February 27, 2012
sunglasses it is then!
Over Christmas break and into the start of the new year Julia spent some time at a CBAT level of care in Boston. It wasn't an easy decision, it never is, but it came down to safety. For weeks Julia was observed by, met with, and interacted with several professionals to try to get to the root of some of Julia's dissociation tantrums. In the end, there was significant progress! Some medication changes, new coping skills and tools, and more tests lined up. We got to work closely with the members of Julia's team at the facility, along with our current team. It is such a blessing to have so many people to help out!
So what have we been up to since Julia is home? She has a coping tent in her room she can go into if she is feeling confused or frustrated, filled with blankets, stuffed animals, stress balls, cubes, coloring, and pictures. I can't say enough good things about this tent! Who wouldn't want a tent to escape into when the world got to much!
Julia also brought home a bear to pass around each night to someone for doing something special, as a tool to teach that everyone is important in the family, even if they don't have several needs. For an example, over February vacation Julia got the bear one night for unlocking the door to the girls room....since Caleb so nicely waited until Ben, Ella, myself and him were in it to lock it from the outside. Thank goodness Jules was there to get us out! Heroes come in all sizes for all reasons :)
She has a new understanding of what is a correct response to anger and confusion, and what is a dangerous one. Kim, one of the therapists that comes each week has been working diligently on understanding different feelings and emotions. We even took a field trip to the library last week with Kim and Barbara to read a story! (who said therapy can't be fun!)
One of the other things that Julia brought home was information from those who worked with her. I don't know anyone that enjoys waiting for results of tests, for themselves or for someone they love. It is a new world for me when it comes to Mental disorders and how to treat them, what to do in every situation and what not to do. So the anxiety of waiting to see what weeks of getting in my daughters brain to find out what she thinks was not a walk in the park. What if I was the problem? What if she doesn't really feel safe at home? what if whatever they find is something I can't help Julia with? What could this poor kid possibly have going on in side of her?
The discharge paperwork was insightful, helpful, encouraging and yet still so heartbreaking at the same time. We are doing what we should be doing, which is great... but why didn't it help? Well my friends, because as it was put to us "we have a very long road ahead of us". By long road, they mean life long... just in case there was any confusion there. Julia did great in her placement, showed who she was, what she felt, and where she was coming from to the best of her ability. The best part about where she was is that they understood the way she was communicating, and not just how she appeared to be.
So what's with the sunglasses? ( I know you were wondering :P) Julia has issue with staring, pretty much all the time non-stop. This can be problematic when where you are staring isn't where you are walking, or eating, or playing etc. One of our bigger issues is at the dinner table. Julia stares at everyone to see what they are doing, it can be messy at times, both when she misses her mouth because of it and how upset the other two get when she is staring. So now, if you come to dinner at our humble abode, you will be dining with a happy girl in gem trimmed sunglasses. A girl who no longer feels bad about constantly staring, a girl who no longer gets spoken to several times during the meal. Instead you will be dining with a little girl, in pretty glasses, a smile on her face... still staring.... it's what she does, but with the confidence to keep on trucking :)
Did it come from a professional? no. Is it rude to eat with sunglasses on? perhaps. Do people ask about them when they see her in them? you bet! Is she proud of who she is... sunglasses and all? absolutely! So is her big brother and big sister. Life isn't about trying your best to fit the mold. Life is about living, loving, and learning. Julia is learning to love living. The struggles aren't going to go away, there will be ups and downs. No one is going to have all the answers for her, she will choose her path. Some days that path may bring her inside her tent confused frustrated and upset. Some days that path may be full of clarity and smiles... either path she chooses, the 4 of us will be with her, proud of who she is, sunglasses and all :)
So what have we been up to since Julia is home? She has a coping tent in her room she can go into if she is feeling confused or frustrated, filled with blankets, stuffed animals, stress balls, cubes, coloring, and pictures. I can't say enough good things about this tent! Who wouldn't want a tent to escape into when the world got to much!
Julia also brought home a bear to pass around each night to someone for doing something special, as a tool to teach that everyone is important in the family, even if they don't have several needs. For an example, over February vacation Julia got the bear one night for unlocking the door to the girls room....since Caleb so nicely waited until Ben, Ella, myself and him were in it to lock it from the outside. Thank goodness Jules was there to get us out! Heroes come in all sizes for all reasons :)
She has a new understanding of what is a correct response to anger and confusion, and what is a dangerous one. Kim, one of the therapists that comes each week has been working diligently on understanding different feelings and emotions. We even took a field trip to the library last week with Kim and Barbara to read a story! (who said therapy can't be fun!)
One of the other things that Julia brought home was information from those who worked with her. I don't know anyone that enjoys waiting for results of tests, for themselves or for someone they love. It is a new world for me when it comes to Mental disorders and how to treat them, what to do in every situation and what not to do. So the anxiety of waiting to see what weeks of getting in my daughters brain to find out what she thinks was not a walk in the park. What if I was the problem? What if she doesn't really feel safe at home? what if whatever they find is something I can't help Julia with? What could this poor kid possibly have going on in side of her?
The discharge paperwork was insightful, helpful, encouraging and yet still so heartbreaking at the same time. We are doing what we should be doing, which is great... but why didn't it help? Well my friends, because as it was put to us "we have a very long road ahead of us". By long road, they mean life long... just in case there was any confusion there. Julia did great in her placement, showed who she was, what she felt, and where she was coming from to the best of her ability. The best part about where she was is that they understood the way she was communicating, and not just how she appeared to be.
So what's with the sunglasses? ( I know you were wondering :P) Julia has issue with staring, pretty much all the time non-stop. This can be problematic when where you are staring isn't where you are walking, or eating, or playing etc. One of our bigger issues is at the dinner table. Julia stares at everyone to see what they are doing, it can be messy at times, both when she misses her mouth because of it and how upset the other two get when she is staring. So now, if you come to dinner at our humble abode, you will be dining with a happy girl in gem trimmed sunglasses. A girl who no longer feels bad about constantly staring, a girl who no longer gets spoken to several times during the meal. Instead you will be dining with a little girl, in pretty glasses, a smile on her face... still staring.... it's what she does, but with the confidence to keep on trucking :)
Did it come from a professional? no. Is it rude to eat with sunglasses on? perhaps. Do people ask about them when they see her in them? you bet! Is she proud of who she is... sunglasses and all? absolutely! So is her big brother and big sister. Life isn't about trying your best to fit the mold. Life is about living, loving, and learning. Julia is learning to love living. The struggles aren't going to go away, there will be ups and downs. No one is going to have all the answers for her, she will choose her path. Some days that path may bring her inside her tent confused frustrated and upset. Some days that path may be full of clarity and smiles... either path she chooses, the 4 of us will be with her, proud of who she is, sunglasses and all :)
Wednesday, January 4, 2012
beyond what your eyes can see
Unfortunately through the past few years we have seen a common thread among people we encounter with Julia. And it usually plays out the same. We often get questions, followed by advice, ending with "well you would never know it" or "I have never seen it".
It is funny how people view a mental disorder differently than a physical one. If someone is diabetic do you doubt them based on the fact that you have not seen them go into diabetic shock? An epileptic who you have not seen seizure? Perhaps for the many migraine sufferers out there, it doesn't show... but that does not make the pain any less. So why don't these people go around showing signs of their medical conditions throughout their day? Most people try to stay on top of there medical condition through heading the adviceof experts, medicine, avoiding public if the symptoms seem to be increasing, or trying to keep it together long enough to get through a public encounter...
It is no different with a mental disorder. Julia's day is full of coping, soothing, confidence building tools from experts so that when she does go out in society she can hold it together. Some times it works, sometimes it doesn't. The days she does hold it together a toll is taken on her already fragile state. Once she is in the safety of her home Jules usually lets down her guard, which makes it hard sometimes, but understanding is the first step to helping.
Learning to see beyond what my eyes could see in Julia has helped me understand her heart, her ambition, and who she is in ways I would have missed if I stuck to my own ignorance.
It is funny how people view a mental disorder differently than a physical one. If someone is diabetic do you doubt them based on the fact that you have not seen them go into diabetic shock? An epileptic who you have not seen seizure? Perhaps for the many migraine sufferers out there, it doesn't show... but that does not make the pain any less. So why don't these people go around showing signs of their medical conditions throughout their day? Most people try to stay on top of there medical condition through heading the adviceof experts, medicine, avoiding public if the symptoms seem to be increasing, or trying to keep it together long enough to get through a public encounter...
It is no different with a mental disorder. Julia's day is full of coping, soothing, confidence building tools from experts so that when she does go out in society she can hold it together. Some times it works, sometimes it doesn't. The days she does hold it together a toll is taken on her already fragile state. Once she is in the safety of her home Jules usually lets down her guard, which makes it hard sometimes, but understanding is the first step to helping.
Learning to see beyond what my eyes could see in Julia has helped me understand her heart, her ambition, and who she is in ways I would have missed if I stuck to my own ignorance.
Wednesday, December 7, 2011
what do you do?
We all learn differently. We have different interests, passions, dislikes, skills and struggles. If we all learned the same there wouldn't be half the new discoveries we have today. So it is that each child learns differently.
So what do you do with a child who has so many different levels of development? What we have learned is to start from the beginning and work forward. Julia has an amazing academic intellect, she has an amazing passion for the arts, which makes sense with her being such a great visual learner.
Over the past month or so we have once again tweaked our parenting approach ( I think we may have it figured out by the time we retire!). We had to look at Julia, who she was, where she has come from, where she wants to be and how we can help her get to a positive place. Through the help of our team and some other exterior supports we have worked very hard once again to make the scaffolding for Julia's daily interactions. It isn't easy! As most of you know i am a HUGE creature of habit and I never like to admit defeat. So changing things is never an easy task in my world!
So where are we at now? We have made some progress and we have regressed. Most of our tactics mimic the parenting a one year old right now. It has taken a lot to go back to toddler world, but it has also brought a new peace of not micro managing (don't worry, i am still micromanaging the cats). With this peace however has brought up for Julia truly where she is developmentally.
My mom read a story one time about where to guide a student. A student got a A, a B, and a D, so which subject do you make him/her work at? My natural instinct would be the D... pull up that grade! Who wouldn't want to make the D better? The answer is A. The A is what they are good at, what they are passionate about, what the feel in their heart... that is what you encourage then! Julia loves the arts, so that is where we are at. We have a 5 year old with strong struggles, but she has a passion for art. So we plug away everyday at the struggles, but we encourage the passions; coloring, movement, stories, music etc.
She is Julia, made by God. We are doing are best to help her cope and give her the tools to thrive, with the end goal of being understood by her peer group. Jules family partner and I were talking yesterday and I think we might be onto something... "no one in life is totally stable, it is all in how you use your resources" :)
So what do you do with a child who has so many different levels of development? What we have learned is to start from the beginning and work forward. Julia has an amazing academic intellect, she has an amazing passion for the arts, which makes sense with her being such a great visual learner.
Over the past month or so we have once again tweaked our parenting approach ( I think we may have it figured out by the time we retire!). We had to look at Julia, who she was, where she has come from, where she wants to be and how we can help her get to a positive place. Through the help of our team and some other exterior supports we have worked very hard once again to make the scaffolding for Julia's daily interactions. It isn't easy! As most of you know i am a HUGE creature of habit and I never like to admit defeat. So changing things is never an easy task in my world!
So where are we at now? We have made some progress and we have regressed. Most of our tactics mimic the parenting a one year old right now. It has taken a lot to go back to toddler world, but it has also brought a new peace of not micro managing (don't worry, i am still micromanaging the cats). With this peace however has brought up for Julia truly where she is developmentally.
My mom read a story one time about where to guide a student. A student got a A, a B, and a D, so which subject do you make him/her work at? My natural instinct would be the D... pull up that grade! Who wouldn't want to make the D better? The answer is A. The A is what they are good at, what they are passionate about, what the feel in their heart... that is what you encourage then! Julia loves the arts, so that is where we are at. We have a 5 year old with strong struggles, but she has a passion for art. So we plug away everyday at the struggles, but we encourage the passions; coloring, movement, stories, music etc.
She is Julia, made by God. We are doing are best to help her cope and give her the tools to thrive, with the end goal of being understood by her peer group. Jules family partner and I were talking yesterday and I think we might be onto something... "no one in life is totally stable, it is all in how you use your resources" :)
Saturday, October 29, 2011
sometimes it's best to say no
One of the things we are often faced with is where to draw the line for what Julia can handle and what she can't handle. With the start of school has come invitations, functions, play date requests etc. No one can say yes to everything, but how do you know when it is going to be a good experience or a bad one? Some of it is trial and error, some of it is knowing Julia. At this point in our journey Ben and I can safely say we know Julia the best. We know what helps a good day continue, what makes a bad day get worse, what cheers up, what brings down. We also know some things to look out for in her mannerisms. With Post Traumatic Stress Disorder comes a slew of different scenarios each day. Everything can be going great and then as if a switch was flipped the rest of the day is a disaster. Maybe it was a smell, a feeling, something she saw, a memory that jumped back in for a moment, a combination of the two or just her delayed social/emotional behavior trying to process everything that is going on every day. When we have one of these days with Jules the best thing to do is bring her back to reality, even if it means saying no to something fun. Is she then being punished for her earlier trauma is doing to her? No, in fact it is simply protecting her. Stimulating a child who has PTSD on an off day is like poking a bear, it only ends badly. We made several attempts to just go with it and still bring her to functions regardless of what her state of mind was. Why not? No one likes to miss out on fun! But after enough failed attempts we learned it is better for everyone if we teach her to know her limits. Empowering her to know her limits will help build a foundation for her throughout life to keep herself safe, even if it means missing out on some fun.
Wednesday, October 19, 2011
Is it even worth it?! (yes!!!)
As many of you know Ben and I are going away for a few days. As we prep the kids with their stay to grammy and grampy's (thank you so much!!) we are faced with yet another result of Julia's earlier years. Julia gets mad when we go away. With good reason she often has little faith that when we leave we are going to return, and words mean nothing to her. So Julia's way to show her fear and anger for this is to make the days leading up to going away as hard as she can for us. Yelling, screaming, hitting, and just all around defiance fills our days. We do what we can to just move on and deal with what we need to and not everything little thing. It is one of the more exhausting things we deal with at this point. We can leave for a night, a day, even when Ella is at children's for a few days we are met with such defiance. The return is much the same, it takes days for her to get herself back to a calm state from the simple reason that we came back. Packing for something is hard in itself, getting kids ready also a challenge. I have an amazing respect for parents with children who have special needs who brave going on vacation. the before and after often seem to cloud and overpower the R and R in the middle. That being said, off we go, to take a break, breathe and get some energy back to brave the return :)
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