Finally, we have peace. We met with Levi's treatment team yesterday and now we KNOW. We did make the right decision in moving him to the placement he is in.
Levi is absolutely thriving in his home and in school. The purpose of our meeting was to develop an Individual Support Plan (ISP) which is similar to an IEP but it addresses life skills and daily activities instead of educational services. Levi's treatment staff TOTALLY gets him and we are so thankful for that. Even more importantly, they truly care about him. Per the plan that was developed yesterday, Levi will get weekly counseling. He will be taken to the public library (he is an avid reader) twice a week, he will work with animals (either at the humane society or he will participate in horse therapy) twice a week, and he will get to go to a skate park twice a week. He is thriving in school and he is forming relationships with the other boys in his home. He has made new friends at school and he is actively participating in making sure he keeps up with his homework. All of this is SO ENCOURAGING.
What more could we ask for? Our preference would be for Levi to live at home and prosper as he is currently. Unfortunately, we do not live in a county that can meet his needs. So, we have changed our expectations and we are grateful for the services Levi is receiving in the Albertina Kerr program. After all, this is not about us, it is about helping him to be successful.
To come to this peace we have had to adjust our expectations. Levi's therapist has told us that some kids never achieve the skills needed to live in a family setting. She was not predicting this for Levi but it was a necessary reality check for us. Our long-term goal is to bring our boy home, but the overreaching goal is to help him thrive, however that happens.
We will take each day as it comes. The process of helping Levi will undoubtedly be slower than we would hope. That is unavoidable. For now, we have a peaceful home and we have an improved relationship with our son in the absence of the chaos that overshadowed our life at home. Life is complicated, isn't it? Parenting is not what we thought it would be, but we do not regret our choices for a single moment. Yes, it is complicated.
Friday, February 27, 2015
Monday, February 23, 2015
Parenting with permission
In case you wondered about our unique parenting experience, this is what it feels like: parenting with permission. Let me explain......
We have so many adults, professionals, and agencies involved in our children's lives that it feels like we have to get permission to parent our children. If we want to take Levi out to lunch, we have to ask first and then we have to tell someone what time we will return him to his home. We were not listed as contacts at his school until an agency representative added us. We attend meeting after meeting where other people tell us what needs to happen in Levi's life. We consult specialist upon specialist to get help and each time we are on the receiving end of the relationship. He is in the care of others more than 95% of the time. Our private lives are laid bare time after time and without doing so we cannot get our son the help he needs. It can be incredibly intrusive and invasive on a personal level.
Then there is Angie. Although she is ours in our hearts and souls, she is technically still a ward of the state. Because of this, we can do NOTHING without permission. We now can get her hair cut, but that is virtually the only decision we can make without state approval. Vacations must be approved. Overnights must be approved. Caregivers must be approved. Educational plans must be approved. Medical treatments definitely must be approved. You get the idea. Besides the fact that she is in foster care, she is also involved in a multitude of programs and services. IEP meetings involve a minimum of 6 people, usually many more. She has a total of 7 specialists that she visits on a regular rotation. We have quarterly monitoring visits with our caseworker from Developmental Disability Services which involve examining our extensive documentation with a fine-toothed comb. Every time I turn around, I must answer to someone about my parenting of this precious child.
Don't get me wrong, we are grateful for the support we have received from the people in our children's lives. We could not continue parenting without it. Sometimes, though, I dream about a life without the looking glass that we are under. What would it be like to have a family crisis that you could deal with as a family without including outsiders? To plan and complete a family vacation without permission? To attend a medical appointment without reporting on it afterwards? Not to attend a court hearing every six months and hope you are found worthy to continue parenting the child who is "yours" in your heart?
Many days, I don't think about it. But, sometimes, it makes me want to scream. My kids have enough challenges already that I could easily pull the covers up and refuse to leave my bed most days. The extra scrutiny and supervision can sometimes seem like the last straw for me. I will never give up, though. My special angels are way too important. And remember, I "chose" this life, as well-meaning community members like to remind me sometimes. Really, though, my children have captured my heart and I will not give up advocating them because it is hard. I guess I just needed to vent tonight. Thank you for listening:)
We have so many adults, professionals, and agencies involved in our children's lives that it feels like we have to get permission to parent our children. If we want to take Levi out to lunch, we have to ask first and then we have to tell someone what time we will return him to his home. We were not listed as contacts at his school until an agency representative added us. We attend meeting after meeting where other people tell us what needs to happen in Levi's life. We consult specialist upon specialist to get help and each time we are on the receiving end of the relationship. He is in the care of others more than 95% of the time. Our private lives are laid bare time after time and without doing so we cannot get our son the help he needs. It can be incredibly intrusive and invasive on a personal level.
Then there is Angie. Although she is ours in our hearts and souls, she is technically still a ward of the state. Because of this, we can do NOTHING without permission. We now can get her hair cut, but that is virtually the only decision we can make without state approval. Vacations must be approved. Overnights must be approved. Caregivers must be approved. Educational plans must be approved. Medical treatments definitely must be approved. You get the idea. Besides the fact that she is in foster care, she is also involved in a multitude of programs and services. IEP meetings involve a minimum of 6 people, usually many more. She has a total of 7 specialists that she visits on a regular rotation. We have quarterly monitoring visits with our caseworker from Developmental Disability Services which involve examining our extensive documentation with a fine-toothed comb. Every time I turn around, I must answer to someone about my parenting of this precious child.
Don't get me wrong, we are grateful for the support we have received from the people in our children's lives. We could not continue parenting without it. Sometimes, though, I dream about a life without the looking glass that we are under. What would it be like to have a family crisis that you could deal with as a family without including outsiders? To plan and complete a family vacation without permission? To attend a medical appointment without reporting on it afterwards? Not to attend a court hearing every six months and hope you are found worthy to continue parenting the child who is "yours" in your heart?
Many days, I don't think about it. But, sometimes, it makes me want to scream. My kids have enough challenges already that I could easily pull the covers up and refuse to leave my bed most days. The extra scrutiny and supervision can sometimes seem like the last straw for me. I will never give up, though. My special angels are way too important. And remember, I "chose" this life, as well-meaning community members like to remind me sometimes. Really, though, my children have captured my heart and I will not give up advocating them because it is hard. I guess I just needed to vent tonight. Thank you for listening:)
Monday, February 16, 2015
1-2-3
Last week, Angie had three medical appointments in a row. Wednesday, Thursday, and Friday. I wrote already about her visit with Dr. Wray and the plan to move forward to treat her seizures. On Thursday, she saw a specialist about her shoulder and he determined that she needs an MRI and a referral to a new specialist that can address possible joint issues.
On Friday, Angie was diagnosed with mild hearing loss. There are a couple of ways to process this information. We can say, "What's a little hearing deficit in light of all of her other issues?" Or, "How can we manage one more thing on top of everything else we have learned recently?". To be honest, I have not settled on one or the other but instead have wavered from one to the other all weekend long. I do want to find out how her hearing loss is impacting her learning and possibly her behavior. I found a simulator online that allows you to hear what someone with hearing loss hears. Here is a link if you want to try it:
http://www.starkey.com/hearing-loss-simulator
It is pretty cool. The audiologist said that Angie can hear what is said but the words can sound like she is underwater, especially if there is any noise in the room.
We have an annual IEP meeting for Angie this week and my thoughts are filled with ideas and hopes for her next year. I feel like there are so many new unanswered questions that it is difficult to know what she needs though. I am grateful for the kind, caring staff at our school. They are always open to our ideas and willing to try new strategies to address our complicated little girl's needs. I hear stories of nightmarish IEP meetings and I am thankful not have those worries.
Toby and I celebrated Valentine's Day with a house full of boys since it was also Josh's 15th birthday. We agreed to celebrate our special day later, when life settles down a bit:) I know, funny, huh?
On Friday, Angie was diagnosed with mild hearing loss. There are a couple of ways to process this information. We can say, "What's a little hearing deficit in light of all of her other issues?" Or, "How can we manage one more thing on top of everything else we have learned recently?". To be honest, I have not settled on one or the other but instead have wavered from one to the other all weekend long. I do want to find out how her hearing loss is impacting her learning and possibly her behavior. I found a simulator online that allows you to hear what someone with hearing loss hears. Here is a link if you want to try it:
http://www.starkey.com/hearing-loss-simulator
It is pretty cool. The audiologist said that Angie can hear what is said but the words can sound like she is underwater, especially if there is any noise in the room.
We have an annual IEP meeting for Angie this week and my thoughts are filled with ideas and hopes for her next year. I feel like there are so many new unanswered questions that it is difficult to know what she needs though. I am grateful for the kind, caring staff at our school. They are always open to our ideas and willing to try new strategies to address our complicated little girl's needs. I hear stories of nightmarish IEP meetings and I am thankful not have those worries.
Toby and I celebrated Valentine's Day with a house full of boys since it was also Josh's 15th birthday. We agreed to celebrate our special day later, when life settles down a bit:) I know, funny, huh?
Friday, February 13, 2015
Teaching the World
This week, Angie had another opportunity to change the world around her. It happens often and I never cease to wonder at how God uses this child to impact those in her midst. We saw it again on Wednesday morning when Angie, Toby and I attended a lecture for second-year medical students that was led by Dr. Carter Wray. Dr. Wray is a special person to our family because of the way he came into our lives.
On the day of Angie's hemispherectomy surgery in May, 2011, Dr. Wray came to us to let us know that the surgery was over and that it appeared to be without complications. He assisted in the surgery and he described it to us in detail. We had not met him before this time. As we waited anxiously to see our girl, Dr. Wray sat with us for almost 2 hours. During that time, he asked us about Angie-who she was and what she liked, etc. He asked about our family and he reassured us about the positive outcomes of hemispherectomy procedures. His presence was such a gift to us. On that day, he told us he was transferring from Seattle Children's to Doernbecher in Portland and his position was in the Epilepsy Unit that follows Angie there.
We have kept in touch with Dr. Wray and he has followed Angie closely. So, we made our third visit to his classroom this week to talk about Sturge-Weber syndrome and the process of deciding on and completing the surgery. And, of course, about her miraculous recovery.
Talking about that time in our lives is both therapeutic and traumatic for me. I love to tell about the strength and courage that Angie exudes as she strives towards reaching her potential. But first came the days when some doctors and state employees wanted to give up on her and initiate a Do Not Resuscitate order instead. I think that Dr. Wray asks us to talk about that time so these future doctors will see the hope and will not similarly give up on patients when the prognosis is grim. The students had great questions and after the class Angie told her knock-knock jokes to a few, which they loved.
On the day of Angie's hemispherectomy surgery in May, 2011, Dr. Wray came to us to let us know that the surgery was over and that it appeared to be without complications. He assisted in the surgery and he described it to us in detail. We had not met him before this time. As we waited anxiously to see our girl, Dr. Wray sat with us for almost 2 hours. During that time, he asked us about Angie-who she was and what she liked, etc. He asked about our family and he reassured us about the positive outcomes of hemispherectomy procedures. His presence was such a gift to us. On that day, he told us he was transferring from Seattle Children's to Doernbecher in Portland and his position was in the Epilepsy Unit that follows Angie there.
We have kept in touch with Dr. Wray and he has followed Angie closely. So, we made our third visit to his classroom this week to talk about Sturge-Weber syndrome and the process of deciding on and completing the surgery. And, of course, about her miraculous recovery.
Talking about that time in our lives is both therapeutic and traumatic for me. I love to tell about the strength and courage that Angie exudes as she strives towards reaching her potential. But first came the days when some doctors and state employees wanted to give up on her and initiate a Do Not Resuscitate order instead. I think that Dr. Wray asks us to talk about that time so these future doctors will see the hope and will not similarly give up on patients when the prognosis is grim. The students had great questions and after the class Angie told her knock-knock jokes to a few, which they loved.
After the class, Angie had her first ride on the tram. We went up to the hospital for her appointment with Dr. Wray to talk about the recent return of her seizures. She loved the tram!
Dr. Wray stated that he is not surprised that the seizures have returned because she has evidence of the disease on the right (intact) side of her brain also. He statement was reassuring but also unnerved me because it suggests progression of the disease and under no terms will he operate on the right side of the brain. There are some medication options, though, and for now we have increased the medication she is taking. Back to one day at a time and we know how to do that.
Dr. Wray also suggested some other referrals for Angie that will help us understand and manage her sleep issues and behavior. According to him, "If the brain doesn't work, EVERYTHING is affected, whether the child currently has seizures or not." We are grateful for the referrals and foresee a very busy few months ahead.
Angie is also being evaluated for surgery on her shoulder, which is painful and has lost mobility because of lack of use. She will have an MRI and a consult with a joint specialist soon.
Our girl is keeping us on our toes, as usual. I am feeling a little overwhelmed but at the same time I am looking forward to getting some answers about how we can better support her progress. She is such a joy, every single day, and I am grateful for the perspective she gives me about what is and is not really important.
Friday, February 6, 2015
My worst fear
My worst fear was realized today-Angie's seizures returned in full force. She was "off" when she woke up this morning and the first seizure started shortly after. For the next several hours, I tried to convince myself that it might not have been a seizure and she just had a virus. I kept her home from school, trusting my intuition that something was just not right.
Then, around noon, the next one hit and I knew. They are back. We had a good run, 3 1/2 years without a seizure. We always knew, though, that Angie's disease would progress and that she could have more seizures. The reality just sucks the breath out of me. Why?
Yesterday at work, a mom came in for her child's appointment and the child was having a seizure. I went to the mom and talked with her as she gave the rescue medication and we watched as the child recovered and eventually began to play. I have talked with her about Angie and her seizures before and we shared our experiences as we observed her little one. It seems ironic in hindsight, or maybe not. Maybe God was preparing me for my day today. He just amazes me.
Angie has slept most of the afternoon and evening and I have been close by keeping watch over her. This changes everything. The amount of supervision she needs. The people that must be warned of the signs of seizure. Our ability to sleep at night and not worry about what the morning will bring. Do I change into my pajamas or do I need to stay dressed in case a midnight trip to the hospital is in order? Truly, this is the way of life for families of children who experience seizures. And there is more, but I will not let my mind go there now.
Thankfully, Angie has an appointment with her neurologist on Wednesday. I called today to let the him know what was happening and the nurse said he will probably want to increase the dosage of her seizure medication and possibly order some tests. So it continues.
I am grateful for you, my friends and family. You have been with us throughout the journey and I know you will stand by as we move forward with the latest challenge. Thank you for sharing your strength and encouragement when we need it most.
Then, around noon, the next one hit and I knew. They are back. We had a good run, 3 1/2 years without a seizure. We always knew, though, that Angie's disease would progress and that she could have more seizures. The reality just sucks the breath out of me. Why?
Yesterday at work, a mom came in for her child's appointment and the child was having a seizure. I went to the mom and talked with her as she gave the rescue medication and we watched as the child recovered and eventually began to play. I have talked with her about Angie and her seizures before and we shared our experiences as we observed her little one. It seems ironic in hindsight, or maybe not. Maybe God was preparing me for my day today. He just amazes me.
Angie has slept most of the afternoon and evening and I have been close by keeping watch over her. This changes everything. The amount of supervision she needs. The people that must be warned of the signs of seizure. Our ability to sleep at night and not worry about what the morning will bring. Do I change into my pajamas or do I need to stay dressed in case a midnight trip to the hospital is in order? Truly, this is the way of life for families of children who experience seizures. And there is more, but I will not let my mind go there now.
Thankfully, Angie has an appointment with her neurologist on Wednesday. I called today to let the him know what was happening and the nurse said he will probably want to increase the dosage of her seizure medication and possibly order some tests. So it continues.
I am grateful for you, my friends and family. You have been with us throughout the journey and I know you will stand by as we move forward with the latest challenge. Thank you for sharing your strength and encouragement when we need it most.
Wednesday, February 4, 2015
Well, Hello, February
As I hoped, February is off to a much better start than last month. First of all, this happened:
Angie received a Golden Paw award at school for Empathy. I could not be more proud. Each month, the school chooses a different quality to identify award winners. Of all of qualities, empathy is my favorite. How amazing for a child who could easily throw a pity party every day (and occasionally, she does!) to possess empathy for her friends.
Levi came home Saturday for an overnight visit. We are learning this new life as we go and the weekend taught us what our next steps are. It was good to have everyone under one roof and we had a great dinner with lots of laughs.
Then, there was this guy:
He made me so proud. Josh was asked to read a long section of scripture in church on Sunday. As most teenage boys would do, he resisted strongly. But, being Josh, he accepted the request. He and his friend, Madeline, took turns reading and they both did an excellent job doing something that was outside of their comfort zone. They read loud and clearly and did not stumble. He has endured a difficult few months and he has risen above the challenges time after time. I am so grateful to have him for my son.
Kirsten and Jordan were both able to visit this weekend. I treasure their visits because we are all so busy that it is hard to get together. I love that they want to attend their siblings' special events. It is such a blessing to have adult children become good friends too.
Four days into February and it hasn't all been good. There have been disappointments and I have disappointed others. I hate that. I am so grateful that God gives me a new beginning every single day, even when I disappoint. This is going to be a good month, I think. One day at a time.
Angie received a Golden Paw award at school for Empathy. I could not be more proud. Each month, the school chooses a different quality to identify award winners. Of all of qualities, empathy is my favorite. How amazing for a child who could easily throw a pity party every day (and occasionally, she does!) to possess empathy for her friends.
Levi came home Saturday for an overnight visit. We are learning this new life as we go and the weekend taught us what our next steps are. It was good to have everyone under one roof and we had a great dinner with lots of laughs.
Then, there was this guy:
He made me so proud. Josh was asked to read a long section of scripture in church on Sunday. As most teenage boys would do, he resisted strongly. But, being Josh, he accepted the request. He and his friend, Madeline, took turns reading and they both did an excellent job doing something that was outside of their comfort zone. They read loud and clearly and did not stumble. He has endured a difficult few months and he has risen above the challenges time after time. I am so grateful to have him for my son.
Kirsten and Jordan were both able to visit this weekend. I treasure their visits because we are all so busy that it is hard to get together. I love that they want to attend their siblings' special events. It is such a blessing to have adult children become good friends too.
Four days into February and it hasn't all been good. There have been disappointments and I have disappointed others. I hate that. I am so grateful that God gives me a new beginning every single day, even when I disappoint. This is going to be a good month, I think. One day at a time.
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