My husband doesn't read this blog so it is safe to say this here. I am preparing a surprise for him. Before I tell you what it is let me back up a bit. Last March we went to Wisconsin with all 4 kids. It was our first vacation with Anya in tow. We learned something that week. Vacation with Anya and Oksana is exhausting. Honestly, when we came home we had to recover. We were exhausted. We haven't gone on vacation since. Every time we consider it we decide it really isn't worth it because we won't be able to enjoy it. Oksana was so emotionally unstable last summer that there was no way we could take her anywhere. We were lucky if she made it to church. The thing is that my husband loves to get away. I can see it wearing on him. I can't tell you how many times we've considered different ideas only to decide it was too expensive or too exhausting.
Recently on Facebook a friend of mine was raving about her experience at a Joni and Friends family camp. If you aren't familiar with Joni and Friends, it is the ministry of Joni Eareckson Tada. They do a number of things related to disability including getting wheelchairs to people in need and helping churches create special needs ministries. The other thing they do is host family camps throughout the US each summer. In these camps each family is paired with a one on one helper for each child with special needs. There are tons of typical camp activities like horseback riding, rock climbing, zip lines, pools, etc. In the mornings the kids go off to play while the parents get to be fed through worship, speakers, and fellowship with other families on the same path. In the afternoons there are fun family activities and in the evenings they have bonfires, ice cream socials, etc. The one on one helper is there for you and even eats meals with you so that there are an extra set of hands to help the kids and the parents can really enjoy their time.
When I called Larry over to the computer to show him this and tell him about it his eyes lit up. His first reaction was "SIGN US UP!" I went to get more information and saw the price. The light in his eyes went away pretty quickly. There was no way we could afford that right now. I assured him that we would save and go for sure next year but I could see he was disappointed.
I contacted my friend on Facebook and she encouraged me to try to get a scholarship and even put me in touch with someone who works with Joni and Friends. I contacted the woman and told her our situation. She encouraged me to sign our family up for camp, apply for the scholarship, and see what God does. I did just that....with out my husband knowing. It will not be a full scholarship but I told them what we could pay so we will see how much of the remainder they will help us with. I found out today that the scholarship applications were submitted and it shouldn't be long before we have an answer. I will tell Larry when everything is in place. I can not wait to see his face! I have told the boys already. They are very excited and want to be there when I tell their dad :).
Here's the cool thing. I've told just a couple of friends and family members about this and they know what we have been through in the last 9 months or so. They know how desperately our family needs a break, needs to have fun, needs to be recharged, and needs to be ministered to. They have been so supportive, offered to help cover the costs not covered by the scholarship, and one family member even said she would put money away all through the next year so that next year we can go with no worries about the cost. I feel incredibly blessed by the people who love us and I know Larry will be amazed when he hears this too.
When we have an answer I will share more about it!
Tuesday, February 25, 2014
Wednesday, February 12, 2014
Touring schools
This week we toured both schools that we are considering for Oksana if/when the time comes that she needs a different setting. Originally we were going to tour 3 but at our last meeting the third was eliminated as a possibility. Apparently they are making a whole lot of changes to that program in the coming years so it might still be an option for the future, but as of right now it is not the program for Oksana. The two schools we toured were the one in our district that has a pilot program geared to kids with trauma in their past, and a private school that takes the kids that the district can not accomodate.
We started on Monday touring the private school. This school is about 35-40 minutes away. It is a school that is on a campus that also has a residential facility on it. They take children with emotional disturbances and autism. I really anticipated loving this school. I've heard great things about it. As we left, Larry and I both agreed that we didn't love it and we didn't hate it. There was good and bad.
There are some really cool things about this school. The biggest thing I loved is that they kids get group therapy daily, individual therapy (I can't remember how often), and also have the option of music and /or art therapy. How cool is that? The class sizes are small. Right around 10 kids per class. There is a teacher and an aide in each room plus a therapist assigned to each room. I think I just loved how normal behaviors are. There was a kid having a meltdown in the hallway and no one was staring or freaking out. It just is what it is and while a few staff were working with this child everyone just moved on like it was no big deal. When I told stories of some of the things Oksana has done no one was shocked, they just acted like it was another day in the life of these kids. I have to say that is a bit refreshing for a parent. Those are all great things and we really do think that this school is awesome for the population of children that it serves.
There was really nothing at all bad about the school itself but there were some things that made us wonder how Oksana would fit. One thing we noticed is that in all of the classes that were possible placements for Oksana she would be the only girl. Deal breaking? No, but definitely something we noticed. The rooms are also extremely small. Extremely. She would be their only child with a physical disability. I don't know how she would maneuver through those rooms. She would be constantly bumping into people and things. If these kids are anything like her they are not going to take well to being bumped into or having her fall on them. One concern that came up is whether or not she could move out of the way fast enough if a child tried to throw a desk. My first answer was possibly not. After seeing the size of the rooms I'd say that I don't know if a child without a physical disability could get out of the way! Another concern we had is her cognitive level. The truth is that we have no idea what to expect from Oksana educationally. We have seen little to no increase in skills despite our best efforts. The class room that would fit her best at this school is great but they can't keep her there forever. Eventually she would need to move to the next room and they are educationally well above her. The next option is to put her in an autism room but we weren't sure that was a good fit for her either. We saw lots of great things but nothing that seemed like the right fit for her as she grew in this school. Another concern was the transportation. School drop off is from about 8-8:30. She would ride in a van that picks up other kids in our district and busses them out to this school. With rush hour traffic they could easily be on the road for an hour. When you add transportation both ways to the school day that makes for an incredibly early morning and an incredibly long day. We'd do it if the school was perfect for her, but right at this time I'm not sure it is the right fit. That doesn't mean it won't be in the future, at which point I will take the time to address my concerns a bit more.
We toured the second school today. This is a class within a school in our district not very far from our home at all. It is a pilot program to meet the needs of some of the more emotionally disturbed children and give them the tools to feel safe, learn to regulate themselves, build on social skills, and move a slowly as needed into more acclimation in the school. The space was fantastic. It was 2 nice sized classrooms divided by a door. One side was more for what are the "school" type activities and one side was more of a quiet space. In the quiet room they had mats like this
but they set them up on their sides so they created a little "house". Does that make sense? Each child had one and they called it their personal space. No other child is allowed in their space unless they knock and are invited. It is a safe place for them to be alone or use however they would like to help them regulate themselves.
They always moved back and forth between the rooms depending on the needs of the child/class. There are currently 4 kids in this program. The teacher is young, which they had told us at the IEP meeting, but she was passionate about this classroom and just soaking in anything she can to make it a successful program. She meets weekly with a behavior specialist and the school psychologist to discuss problems, tactics, etc. There is tons of support from the district for this class. The principal spent quite a bit of time with us too and he was a very nice man. We really liked him. The one down side is that it appeared to us that the children had a lot of say in what their day is like. I would want to be sure that Oksana did not feel that she had control over the class and her schedule. She needs firm structure. If they give her the option she will sit in her personal space squeezing balls and talking to imaginary people ALL DAY LONG. Then when they wanted her to move out of that they would have to face her wrath as they try to take her control away. That's all stuff we could discuss more deeply if she ever moved to that program. One of the questions I asked was what this program could offer that her current setting can't. It was mentioned that in a resource setting the teacher does not have the ability to really devote all of the time needed to help a child in a meltdown. This program is designed for kids who meltdown so the teacher can devote time to that child without it impacting the education of the other kids.
So this evening I sent an email to some of our IEP team to let them know what we saw and what we think. Both are great programs. We are thankful that right now she can stay where she is but we did bring up the concern that Oksana might max out her teacher in a resource setting and impact the education of the other kids. Her teacher emailed us back and assured us that she and her team do not feel maxed out. They have a great system down with Oksana now and she is growing and thriving there. That was good to hear. In the end, as good as those other programs are, they are second best to where she is now. We are going to sit back now and enjoy the peace while we can knowing that no matter what happens in the future Oksana will be just fine!
We started on Monday touring the private school. This school is about 35-40 minutes away. It is a school that is on a campus that also has a residential facility on it. They take children with emotional disturbances and autism. I really anticipated loving this school. I've heard great things about it. As we left, Larry and I both agreed that we didn't love it and we didn't hate it. There was good and bad.
There are some really cool things about this school. The biggest thing I loved is that they kids get group therapy daily, individual therapy (I can't remember how often), and also have the option of music and /or art therapy. How cool is that? The class sizes are small. Right around 10 kids per class. There is a teacher and an aide in each room plus a therapist assigned to each room. I think I just loved how normal behaviors are. There was a kid having a meltdown in the hallway and no one was staring or freaking out. It just is what it is and while a few staff were working with this child everyone just moved on like it was no big deal. When I told stories of some of the things Oksana has done no one was shocked, they just acted like it was another day in the life of these kids. I have to say that is a bit refreshing for a parent. Those are all great things and we really do think that this school is awesome for the population of children that it serves.
There was really nothing at all bad about the school itself but there were some things that made us wonder how Oksana would fit. One thing we noticed is that in all of the classes that were possible placements for Oksana she would be the only girl. Deal breaking? No, but definitely something we noticed. The rooms are also extremely small. Extremely. She would be their only child with a physical disability. I don't know how she would maneuver through those rooms. She would be constantly bumping into people and things. If these kids are anything like her they are not going to take well to being bumped into or having her fall on them. One concern that came up is whether or not she could move out of the way fast enough if a child tried to throw a desk. My first answer was possibly not. After seeing the size of the rooms I'd say that I don't know if a child without a physical disability could get out of the way! Another concern we had is her cognitive level. The truth is that we have no idea what to expect from Oksana educationally. We have seen little to no increase in skills despite our best efforts. The class room that would fit her best at this school is great but they can't keep her there forever. Eventually she would need to move to the next room and they are educationally well above her. The next option is to put her in an autism room but we weren't sure that was a good fit for her either. We saw lots of great things but nothing that seemed like the right fit for her as she grew in this school. Another concern was the transportation. School drop off is from about 8-8:30. She would ride in a van that picks up other kids in our district and busses them out to this school. With rush hour traffic they could easily be on the road for an hour. When you add transportation both ways to the school day that makes for an incredibly early morning and an incredibly long day. We'd do it if the school was perfect for her, but right at this time I'm not sure it is the right fit. That doesn't mean it won't be in the future, at which point I will take the time to address my concerns a bit more.
We toured the second school today. This is a class within a school in our district not very far from our home at all. It is a pilot program to meet the needs of some of the more emotionally disturbed children and give them the tools to feel safe, learn to regulate themselves, build on social skills, and move a slowly as needed into more acclimation in the school. The space was fantastic. It was 2 nice sized classrooms divided by a door. One side was more for what are the "school" type activities and one side was more of a quiet space. In the quiet room they had mats like this
They always moved back and forth between the rooms depending on the needs of the child/class. There are currently 4 kids in this program. The teacher is young, which they had told us at the IEP meeting, but she was passionate about this classroom and just soaking in anything she can to make it a successful program. She meets weekly with a behavior specialist and the school psychologist to discuss problems, tactics, etc. There is tons of support from the district for this class. The principal spent quite a bit of time with us too and he was a very nice man. We really liked him. The one down side is that it appeared to us that the children had a lot of say in what their day is like. I would want to be sure that Oksana did not feel that she had control over the class and her schedule. She needs firm structure. If they give her the option she will sit in her personal space squeezing balls and talking to imaginary people ALL DAY LONG. Then when they wanted her to move out of that they would have to face her wrath as they try to take her control away. That's all stuff we could discuss more deeply if she ever moved to that program. One of the questions I asked was what this program could offer that her current setting can't. It was mentioned that in a resource setting the teacher does not have the ability to really devote all of the time needed to help a child in a meltdown. This program is designed for kids who meltdown so the teacher can devote time to that child without it impacting the education of the other kids.
So this evening I sent an email to some of our IEP team to let them know what we saw and what we think. Both are great programs. We are thankful that right now she can stay where she is but we did bring up the concern that Oksana might max out her teacher in a resource setting and impact the education of the other kids. Her teacher emailed us back and assured us that she and her team do not feel maxed out. They have a great system down with Oksana now and she is growing and thriving there. That was good to hear. In the end, as good as those other programs are, they are second best to where she is now. We are going to sit back now and enjoy the peace while we can knowing that no matter what happens in the future Oksana will be just fine!
Friday, February 7, 2014
Hello stability, come stay for awhile!
Wow. Oksana is in a really great place right now! Not perfect by any means but any issues we have are fairly easily dealt with. She had a snow day this week and she didn't even have one problem! School is going great too. This astounds me. It's almost unreal that this can be the same child who was out of her mind just a few months ago and who was going to get kicked out of her school.
If her life gets out of whack we still see the behaviors start to come pretty heavy but I expect that. This is a nice moment of peace that we are all enjoying.
We are touring both of the school options that we were looking at for Oksana next week. If you remember we decided to keep her where she is at this time but we all felt like it would be smart to be proactive and have a plan in case she does need to be moved at some point. That way we aren't rushing in an emergency situation but already have our ducks in a row.
The boys started their support group for biological children with adopted siblings. They really enjoyed it. It was a good group of kids. I think 10 signed up but 8 were there. That's a nice size group! I'm so thrilled that they have this opportunity to be around other kids who understand what their life is like.
It's good to have things rolling along nicely right now. I'll post a bit about the schools we visit next week.
If her life gets out of whack we still see the behaviors start to come pretty heavy but I expect that. This is a nice moment of peace that we are all enjoying.
We are touring both of the school options that we were looking at for Oksana next week. If you remember we decided to keep her where she is at this time but we all felt like it would be smart to be proactive and have a plan in case she does need to be moved at some point. That way we aren't rushing in an emergency situation but already have our ducks in a row.
The boys started their support group for biological children with adopted siblings. They really enjoyed it. It was a good group of kids. I think 10 signed up but 8 were there. That's a nice size group! I'm so thrilled that they have this opportunity to be around other kids who understand what their life is like.
It's good to have things rolling along nicely right now. I'll post a bit about the schools we visit next week.
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