It's Christmas night and it is hard to believe that after months of planning it is over! I have to confess something. I did not take one picture. Quite honestly I don't feel bad about that at all. I could barely keep track of everything going on without a camera in my hand so I sure wasn't going to miss more by taking pictures! This year brought some great surprises and some excitement over anticipated gifts. Once the sensory room is all together it is going to be awesome. 2 of the 3 swings were a big hit. The one that is a bungee chair is going to a friend who will get better use from it. Oksana's high tone makes it very difficult for her to be comfortable on it and Anya much prefers the platform swing. Tonight we turned out the lights and turned on the disco ball. Oksana was hanging out on the crash pad and Anya was swinging on the platform swing. I put on some relaxing music and I seriously could have stayed there all night!
Oksana loved all of her stocking stuffer sensory balls and, of course, the crash pad is a huge hit. Anya finally understands presents and kept signing "presents" wondering when she would get more! I think her favorites are the 2 Elmos that she got. The girl loves her Elmo! Clayton's big surprise was a cell phone. We were pretty adamant about waiting until he was 16, but as he gets more involved in things at school and at church we are finding more times when it would come in very handy.....so we buckled :). He had NO idea and was very excited. Evan loves his bungee chair.....and pretty much everything he got!
Christmas and Christmas Eve were overall really good. Last year was rough with Anya. She was very overstimulated and our Christmas was not a fun one. We didn't make it through this year without a few bumps in the road. There were periods of time when we literally could not take our eyes off of her or she would be getting herself into some sort of trouble. Hitting children, grabbing stuff from them, and trying to touch anything that she knew she couldn't were favorite activities during those times. There was just so much going on and so many new people. Still, she was much better than last year. Oksana did fantastic....until 6:00 tonight and then we got to see stuff we haven't seen in awhile that landed her in bed early. I won't dish out the whole thing, I imagine you can guess that she was tired and overstimulated and it wasn't pretty. She did manage to control herself from going into a total all out rage but it was really, really close. Interestingly it was after time in the sensory room. It all started because she was ticked that she had to come upstairs for a bath but didn't want to leave the room so I think we are going to have to set very strict boundaries for sensory room time until she can handle herself better. I try so hard not to set expectations for holidays but every once in awhile I get bit in the behind by them!
I will post pictures as soon as the sensory room is complete. My mom is here right now and it is doubling as a bedroom so I might wait for pictures until she is gone. I hope you all had a wonderful Christmas!
Wednesday, December 25, 2013
Friday, December 13, 2013
Sensory Room
I am so excited about this Christmas. I can only share what the girls are getting because a certain boy tends to read this blog ;). For the last couple of years we have bought the girls (or girl before they were plural) toys. That's what you do for kids on Christmas, right?! Princesses, games, puzzles, musical toys, etc. Kids love that stuff! Well not mine. Year after year I buy those gifts, they get played with for 1 week, and they don't get touched again. My girls just don't play with toys. There are a couple that have gotten good use but they are few and far between. Coming into this Christmas I was sort of dreading having to come up with stuff to get the girls since I have toy boxes and shelves full of unused toys.
I asked Oksana to start thinking about Christmas a couple of months ago and there were only 2 things on her list.....a crash pad and some lights that kids can wrap up in and are often in sensory rooms. Well the lights are very expensive so that wasn't happening, but as I researched it hit me that if sensory stuff is what she is asking for then we should give her sensory stuff. I knew Anya would love it too. She is my swinger! At that point the idea came to create a sensory room. We have an area in our basement that was basically a toy room and as you can imagine, no one ever plays in it! Over Thanksgiving weekend we cleared it all out, and now it is ready to be turned into a sensory room on Christmas!
I became so excited about this idea and I have researched for hours on the best products that my girls will love and the best prices on those products. I talked to family members who have just as hard of a time buying for them and we pooled our money to make them a great room! We will also include things we already have like our therapy balls. Here is what they girls are getting for Christmas. I'll post again when it is all together and being used. Click the words below the picture to take you to the web site.
I asked Oksana to start thinking about Christmas a couple of months ago and there were only 2 things on her list.....a crash pad and some lights that kids can wrap up in and are often in sensory rooms. Well the lights are very expensive so that wasn't happening, but as I researched it hit me that if sensory stuff is what she is asking for then we should give her sensory stuff. I knew Anya would love it too. She is my swinger! At that point the idea came to create a sensory room. We have an area in our basement that was basically a toy room and as you can imagine, no one ever plays in it! Over Thanksgiving weekend we cleared it all out, and now it is ready to be turned into a sensory room on Christmas!
I became so excited about this idea and I have researched for hours on the best products that my girls will love and the best prices on those products. I talked to family members who have just as hard of a time buying for them and we pooled our money to make them a great room! We will also include things we already have like our therapy balls. Here is what they girls are getting for Christmas. I'll post again when it is all together and being used. Click the words below the picture to take you to the web site.
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| Crash Pad |
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| Platform swing - A lady makes these on Etsy for a great price! (this link takes you to the smaller one but she does make a bigger one, that is the one we got) |
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| Bungee Swing |
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| Lycra Swing (I had to get one that carried more weight because my boys are dying to get in this!) |
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| Disco Light |
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| Led Lights - I ordered these in multicolor and white. I will line the perimeter of the room in them. I was specifically looking for lights that had different effects....blink, fade, steady on, slow fade, etc.
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STOCKING STUFFERS: |
| Inside Out Ball - They had these at Easter Seals back when we lived in Little Rock and Oksana LOVED them! I'm so excited that I found them! |
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| Sensory Spaghetti - This stuff feels amazing! |
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| EZ Squeeze DNA ball |
Thursday, December 12, 2013
The meeting went great
I'll start by saying that we did not make a decision but it was a wonderful meeting.
I have to admit that I went into this with guns blazing. I did not trust these three "district specialists" at all. I was determined to make sure that they didn't come in and try to push us into things we didn't want without knowing us or our kid. They might have thought we were a bit nuts but we were DETERMINED that Oksana would not be put in the wrong placement. A friend told us that they might present a certain program to us. We were told that we should not put her in it because it is a pilot program and they are still learning. Sure enough very shortly into the meeting they start talking about this program and I came right out and said "I was told that is a pilot program and I shouldn't put my kid in it." After they picked their jaws up off the ground they admitted that was true they honestly told us the good and the bad about the program. Larry asked about the credentials of the staff in that program. They weren't any different than the staff we have at our current school, but the school psychologist and behavior specialist kept assuring us that they were personally training this staff and heavily involved in the program. So Larry asked what their credentials were to be able to train the staff! Well after I heard the credentials of the school psychologist I immediately relaxed and knew I could trust him. He has extensive experience with trauma. His first job was with the VA and he worked with veterans who had PTSD. As we talked more and more we learned that he follows many of the same philosophies that we do on parenting kids with a past of trauma. Once I trusted a bit more I heard what they were saying. Considering our goals for Oksana, both the program I wanted, and the one I didn't want, have pros and cons.
There was so much more to it but for the sake of your time reading this and my fingers I will move on. In the end there are actually 3 options we are looking at. The first is the pilot program. There are some real benefits to it for Oksana but it still makes me nervous. The second is the alternative school that I wanted. There are some downfalls to this for Oksana that I did not anticipate. The third option is one that we all agreed is probably overkill but we still wanted to have it on the table and get their professional input on our situation. It is a private residential setting. They have a school there but it is mostly for kids who don't succeed in any other options in the district. Still, they are very knowledgeable about trauma and could offer us some good input.
The plan from this point is that staff from each of those three settings will come observe Oksana in school. Then they will say why they do or do not think their program is a good fit for her. If they are positive about her ability to succeed in their program Larry and I will tour it and see it for ourselves. Then we are coming back together mid January to discuss everything and hopefully make a decision.
The only bummer is that I really wanted this done before Christmas so we could make a clean break into a new school. The decision just can't be made that fast.
I want to share the really cool thing though. Our IEP team was totally advocating for Oksana. They would ask the specialists questions that I didn't even consider. They also encouraged me to trust the district specialists, and I'm glad they did. We have such an awesome IEP team. When I think of losing them as Oksana's team I cry. When the meeting was over some of the team had to leave but a few of us were left behind. I expressed to the district specialists that I did not trust them coming in. They agreed that I had no reason to. I told them that I could see now that they weren't there to benefit the district, but truly to help us make the best decision for Oksana. One of them leaned in and said "I'm not supposed to say this but I am because I can with you. I want you to know that at 5am this morning I got up to let my dog out and then I prayed over this meeting. This decision is being prayed for." I got to share with them the verse that means so much to me for my girls (Jeremiah 29:11) and tell them that I know God is in this because he told me that He will not harm her but he will give her a hope and a future.
At this point one of the district specialists, the special ed teacher, and the diagnostician are all crying. The teacher and diagnostician expressed how hard it would be to let Oksana go. We all got to talk about what a neat kid she is and what a blessing she is. It was awesome.
I am very anxious to start the process of making this decision but I doubt anything will happen before the holidays. My hope and prayer is that we can find the right placement for her so we do not have to come back and move her again. This is not going to be an easy decision at all.
I have to admit that I went into this with guns blazing. I did not trust these three "district specialists" at all. I was determined to make sure that they didn't come in and try to push us into things we didn't want without knowing us or our kid. They might have thought we were a bit nuts but we were DETERMINED that Oksana would not be put in the wrong placement. A friend told us that they might present a certain program to us. We were told that we should not put her in it because it is a pilot program and they are still learning. Sure enough very shortly into the meeting they start talking about this program and I came right out and said "I was told that is a pilot program and I shouldn't put my kid in it." After they picked their jaws up off the ground they admitted that was true they honestly told us the good and the bad about the program. Larry asked about the credentials of the staff in that program. They weren't any different than the staff we have at our current school, but the school psychologist and behavior specialist kept assuring us that they were personally training this staff and heavily involved in the program. So Larry asked what their credentials were to be able to train the staff! Well after I heard the credentials of the school psychologist I immediately relaxed and knew I could trust him. He has extensive experience with trauma. His first job was with the VA and he worked with veterans who had PTSD. As we talked more and more we learned that he follows many of the same philosophies that we do on parenting kids with a past of trauma. Once I trusted a bit more I heard what they were saying. Considering our goals for Oksana, both the program I wanted, and the one I didn't want, have pros and cons.
There was so much more to it but for the sake of your time reading this and my fingers I will move on. In the end there are actually 3 options we are looking at. The first is the pilot program. There are some real benefits to it for Oksana but it still makes me nervous. The second is the alternative school that I wanted. There are some downfalls to this for Oksana that I did not anticipate. The third option is one that we all agreed is probably overkill but we still wanted to have it on the table and get their professional input on our situation. It is a private residential setting. They have a school there but it is mostly for kids who don't succeed in any other options in the district. Still, they are very knowledgeable about trauma and could offer us some good input.
The plan from this point is that staff from each of those three settings will come observe Oksana in school. Then they will say why they do or do not think their program is a good fit for her. If they are positive about her ability to succeed in their program Larry and I will tour it and see it for ourselves. Then we are coming back together mid January to discuss everything and hopefully make a decision.
The only bummer is that I really wanted this done before Christmas so we could make a clean break into a new school. The decision just can't be made that fast.
I want to share the really cool thing though. Our IEP team was totally advocating for Oksana. They would ask the specialists questions that I didn't even consider. They also encouraged me to trust the district specialists, and I'm glad they did. We have such an awesome IEP team. When I think of losing them as Oksana's team I cry. When the meeting was over some of the team had to leave but a few of us were left behind. I expressed to the district specialists that I did not trust them coming in. They agreed that I had no reason to. I told them that I could see now that they weren't there to benefit the district, but truly to help us make the best decision for Oksana. One of them leaned in and said "I'm not supposed to say this but I am because I can with you. I want you to know that at 5am this morning I got up to let my dog out and then I prayed over this meeting. This decision is being prayed for." I got to share with them the verse that means so much to me for my girls (Jeremiah 29:11) and tell them that I know God is in this because he told me that He will not harm her but he will give her a hope and a future.
At this point one of the district specialists, the special ed teacher, and the diagnostician are all crying. The teacher and diagnostician expressed how hard it would be to let Oksana go. We all got to talk about what a neat kid she is and what a blessing she is. It was awesome.
I am very anxious to start the process of making this decision but I doubt anything will happen before the holidays. My hope and prayer is that we can find the right placement for her so we do not have to come back and move her again. This is not going to be an easy decision at all.
Monday, December 9, 2013
Quick catch up
I really should blog more often because there certainly isn't a lack of stuff to talk about. For now I'm just going to do some updates and then I might expand on some of them later.
- I got a phone call last week to set up a meeting date to discuss Oksana's school situation. Tomorrow morning Larry and I will meet with our whole IEP team as well as 3 district specialists. We will have an open discussion about our goals, concerns, and feelings about Oksana's placement, and then discuss our options. Larry and I have done our research and already know where we would like to have her placed and where we definitely do not want her. We will see if they agree. I think they will. If not they will get to see a side of me they haven't seen yet ;).
- If you've been following this blog for awhile you might know that I have tried and tried to figure out what to do to help Oksana with her stability. She is an independent walker but she is still very unstable. When we are in public she has to be holding a hand or holding onto something at all times or she runs into people, crashes into store displays, etc. If there is any kind of crowd, even a small one, you can guarantee she will be on the floor. She just can not balance through people. She needs wide open spaces to maintain her balance. For years now we have asked therapists and doctors to help us find a solution. A walker is more support than she needs but 2 years ago we were told by Shriners that she isn't cognitively able to use forearm crutches. Well our therapist was determined to help us find a solution so we tried a TON of different options and guess which ones are working out great? The forearm crutches! She doesn't use them correctly but since she is an independent walker her therapist doesn't care. She just needs that little bit of stability and she loves them!! She made it all the way through church, crowds and all, without holding my hand once! She only uses them in situations like stores, church, etc. There are a lot of places she won't need time like at home, or playing outside. I'll get a video up soon.
- I haven't talked much about Anya, mostly because there isn't much to say! She is doing AWESOME! She is still, and will always be, stubborn and disobedient. She still drives me crazy almost on a daily basis, but oh how I adore her. We just did her 1 year post placement report and it was so fun to see her progress just from the time that we did her 6 month report.
-Larry LOOOOOOOVVVVES his new job! We are experiencing trial by fire since this is the "busy season" at church. He has been working many hours, but we know it is temporary, and they allow him to be so flexible (for example so he can attend the meeting Tuesday) so it's fine.
-The boys are another one that don't need much of an update. They are thriving at their "school". I just had parent teacher conferences and I couldn't be happier. Clayton is getting very involved at church. He is part of their tech team and serves from 1-3 hours a week helping them. Evan, my incredibly shy guy, came running out of church a couple of weeks ago begging me to sign him up for winter camp with his youth group. I couldn't believe it! He goes in January. We've been here for 2 1/2 years now. That first year I really wondered if they would find their place here. They have now and they are doing great.
- As I learn and read (maybe a bit obsessively ;) about bipolar disorder I have more and more compassion for Oksana. Considering what she is dealing with, the things this child has achieved are mind blowing. She has now indicated to us that there are balloons that bounce around in her head all day and that one of them tells her to hurt other people, hurt herself, and do bad things when she is angry. This is not uncommon in bipolar disorder, and while we do not tolerate hurtful behaviors at all and are very firm in our boundaries and our discipline, it does give us new perspective that has been very freeing for us and for our relationship with her. I think we are in a good place right now with her. It feels great to say that after months of struggles. Let's hope this lasts!
More to come soon.....
- I got a phone call last week to set up a meeting date to discuss Oksana's school situation. Tomorrow morning Larry and I will meet with our whole IEP team as well as 3 district specialists. We will have an open discussion about our goals, concerns, and feelings about Oksana's placement, and then discuss our options. Larry and I have done our research and already know where we would like to have her placed and where we definitely do not want her. We will see if they agree. I think they will. If not they will get to see a side of me they haven't seen yet ;).
- If you've been following this blog for awhile you might know that I have tried and tried to figure out what to do to help Oksana with her stability. She is an independent walker but she is still very unstable. When we are in public she has to be holding a hand or holding onto something at all times or she runs into people, crashes into store displays, etc. If there is any kind of crowd, even a small one, you can guarantee she will be on the floor. She just can not balance through people. She needs wide open spaces to maintain her balance. For years now we have asked therapists and doctors to help us find a solution. A walker is more support than she needs but 2 years ago we were told by Shriners that she isn't cognitively able to use forearm crutches. Well our therapist was determined to help us find a solution so we tried a TON of different options and guess which ones are working out great? The forearm crutches! She doesn't use them correctly but since she is an independent walker her therapist doesn't care. She just needs that little bit of stability and she loves them!! She made it all the way through church, crowds and all, without holding my hand once! She only uses them in situations like stores, church, etc. There are a lot of places she won't need time like at home, or playing outside. I'll get a video up soon.
- I haven't talked much about Anya, mostly because there isn't much to say! She is doing AWESOME! She is still, and will always be, stubborn and disobedient. She still drives me crazy almost on a daily basis, but oh how I adore her. We just did her 1 year post placement report and it was so fun to see her progress just from the time that we did her 6 month report.
-Larry LOOOOOOOVVVVES his new job! We are experiencing trial by fire since this is the "busy season" at church. He has been working many hours, but we know it is temporary, and they allow him to be so flexible (for example so he can attend the meeting Tuesday) so it's fine.
-The boys are another one that don't need much of an update. They are thriving at their "school". I just had parent teacher conferences and I couldn't be happier. Clayton is getting very involved at church. He is part of their tech team and serves from 1-3 hours a week helping them. Evan, my incredibly shy guy, came running out of church a couple of weeks ago begging me to sign him up for winter camp with his youth group. I couldn't believe it! He goes in January. We've been here for 2 1/2 years now. That first year I really wondered if they would find their place here. They have now and they are doing great.
- As I learn and read (maybe a bit obsessively ;) about bipolar disorder I have more and more compassion for Oksana. Considering what she is dealing with, the things this child has achieved are mind blowing. She has now indicated to us that there are balloons that bounce around in her head all day and that one of them tells her to hurt other people, hurt herself, and do bad things when she is angry. This is not uncommon in bipolar disorder, and while we do not tolerate hurtful behaviors at all and are very firm in our boundaries and our discipline, it does give us new perspective that has been very freeing for us and for our relationship with her. I think we are in a good place right now with her. It feels great to say that after months of struggles. Let's hope this lasts!
More to come soon.....
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