Yesterday morning I dropped the 2 two's off at Nita's house then Sam, Amaris and I headed to Iowa City to the Disabilities and Behavior Clinics. We have been struggling a long time with behaviors and some other issues. When we realized these struggles were not unique to home but presented everywhere the children went: school, church etc. We consulted with a post adoption specialist whom we met at the IFAPA conference this Spring. Brian has turned out to be a diamond in the rough for me. He is an amazing person, full of resources, ideas and the best supporter and cheerleader EVER!! His recommendation was to contact Iowa City clinics. So I did. The process has taken a while to play out but I am so pleased we chose to do this. I feel better equipped now to help the children reach their full potential both at hoe and out in their world.
Both children were amazingly good on the ride out to the clinics (3 hours due to a detour from road construction). We arrived 15 minutes early, checked in, and were promptly taken care of. Samuel was assigned to a male psychologist and Amaris to a female. Both docs took me into a conference room first while the children played in a play room and watched cartoons. We talked about history family history (of which we have little) and what is currently going on with both children. Then they took the children.
One of the many great things about the clinics was that they had read all the records we had sent in prior to our visit, the school reports, health histories etc. Both docs had notes of questions they wanted clarified. Then they based all the testing on the preliminary results of the evaluations we all had filled out. This way the children did not have to suffer through unnecessary testing.
When they were done about 2 hours later give or take a few minutes the docs scored all the tests. Then Sam's doc came to get me. We went into a little room where he had been working with Sam and we went over all the tests and he shared with me what he thinks is going on with Sam. About half way through our conference the doc for Amaris joined us and shared all her findings. I can not tell you how good it felt to sit there in that room and actually get feed back and answers right then. With Madison we have always had to wait days and sometimes months for answers and in the mean time they always would give her medications to hold us over. Not so here. They gave me diagnosis for both children and recommendations for what we should do next. So, not only do we have names for what is going on but also understanding for what it all means and a plan of action to take in order to improve their over all performances every where!!
I have to say I was surprised by some of what I was told and down right shocked at others. But overall. I left there feeling encouraged and empowered to fight for their best chance at the best life ever!
I would absolutely do this again if I had the need and I desperately wish we would have had this opportunity for Madison when she was little. Can you imagine the difference it would have made.....
Love you all!!
Ang
Wednesday, May 26, 2010
Monday, May 24, 2010
Madison's update
Wow. Honestly I think I am still in shock over the events that have unfolded in the last 2 weeks. I have to back up and give a little back up info before I give the update. Back in December when we were preparing to bring Madison home for the Christmas break we had a couple meetings about her future and what the best path to take would be. At that time we had an option to bring her back to Iowa and enter her into group care under her child waiver. If we had chosen to bring her home then all of her services would have been reinstated, and she would have transitioned naturally into adult services if they were needed at that point. In all of our discussions we decided to keep her in TC. We believe in this program and were told she would graduate from the program and from high school. We felt it was important to encourage her to focus and complete the program. Follow through with your word. finish what you start. So after Christmas we took her back. Fully believing in the program and her ability to complete and graduate. We were all on the same page. between then and now Madison has hit a few rough patches here and there. She has made progress and then lost ground. She has battled self injury and running away. But she always comes back and works harder than before. 2 weeks ago we received a text message from her counselor at TC informing us that she will be discharged from their program June 1, 2010 because she is now 18. 18 and 3 months is apparently the magic number. I have refrained from writing about this so far because I have been emotionally unstable and definitely unable to write with an objective heart. with out angry fear and bitterness laced in between each word. I am still angry. confused. scared. but now I have been forced into survival mode again. I have to protect Madison form herself and from the world. I have to protect the other children. I have spent countless hours on the phone begging screaming crying searching for answers. searching for help. Only to find that our decision in December to believe in TC and support her completion of the program lost her all services. She now has to be wait-listed (#264~a 2 to 3 year wait) I was told to bring her home and wait for her to injure herself or someone else and then take her to the local ER. They would then admit for a 3 day eval. and send her back....we were expected to live in that cycle until she reaches the top of the wait list. OR (they say with optimism) you can always drop her at the local shelter, she can eat and sleep there but will have to leave during the day....WHAT???? as if I would even consider this an option. I exhausted all my resources. Foster Care contacts. Adoption contacts. CASA contacts. Dropz of Hope contacts. NOTHING. I became discouraged when finally a call I had made a week before was finally returned and although he could not help me he gave me the name of a NPO he said he didn't know much about them and honestly thought they only helped young men but told me to call. I called left a message and the tag/waiting game began. Thank the Good Lord for Sara. I honestly don't know what I would do without her. Her patience. Her wisdom. Her support. She willingly went out of her way, above and beyond any reasonable efforts to help me in my search. It is because of her initial phone call tot he new place that we were even able to get an interview. It turns out my contact was correct. Thus far they have served inner city kids in before and after school programs and they have a group home for young men. A shadow of disappointment threatened to cover me when the however was softly spoken. HOWEVER. In June they will be opening a group home for young ladies...words softly spoken soothed my fears a tad. And I was able to allow hope to shine through once again. We set up a meeting where Scott Sara and myself all met with the House Mother. From there we decided to set up a phone interview with Madison. Last Monday I talked with Madison about the program and the idea of her entering the house as her next step. Tuesday Sara followed up with a phone call to Madison to answer any questions. (Madison still has no idea that she has to leave TC) Both phone calls went well. Thursday Dee from the new place called down and spent a little over an hour on the phone interviewing Madison. Dee then called me to let me know she will be sending an application to Madison once it is complete and returned they will go over it and decide.
Honestly. This program is our only chance to help Madison. It is not perfect. It has its fair share of fear-filled areas. But the good out-weighs the bad and I believe Madison needs to be there. This program focuses on daily living skills, preparing young adults to live independently (or as independently as possible) prepares them to be able to seek and keep employment and also has a special agreement with the local community college for them to complete their high school education. Which is HUGE since TC is discharging her before she completes high school.
I spoke with Madison tonight, she received the application in the mail and has begun filling it out, her counselor will help her finish it up tomorrow and get it into the mail.
Please pray this is the door we are supposed to enter. Pray protection over my daughter as she gains a lot of freedom. Freedom she has never had before. I know I can not protect her. I can not heal her heart. But I do know the ONE who can.
Love you all
Angela
Honestly. This program is our only chance to help Madison. It is not perfect. It has its fair share of fear-filled areas. But the good out-weighs the bad and I believe Madison needs to be there. This program focuses on daily living skills, preparing young adults to live independently (or as independently as possible) prepares them to be able to seek and keep employment and also has a special agreement with the local community college for them to complete their high school education. Which is HUGE since TC is discharging her before she completes high school.
I spoke with Madison tonight, she received the application in the mail and has begun filling it out, her counselor will help her finish it up tomorrow and get it into the mail.
Please pray this is the door we are supposed to enter. Pray protection over my daughter as she gains a lot of freedom. Freedom she has never had before. I know I can not protect her. I can not heal her heart. But I do know the ONE who can.
Love you all
Angela
Thursday, May 20, 2010
Minnesota and our plan
This morning I sit at the computer with my cup of coffee at HOME. Nothing better than having a REAL cup of coffee and feeling the cool breeze blow through the front window. In case no one knew this about me....I HATE hotels! I would rather camp out doors than stay in a hotel. Funny, HUH?
Tuesday evening Isaiah and I made the trek over to the Mall of America. I can honestly say the only reason we go there is for the Lego Store. Isaiah had saved $117 and was very anxious to spend it on a new set. We were greeted by a creepy sales guy whose goal was clearly to become Isaiah's new BFF HA! obviously he had no clue of Isaiah's ability to make people disappear, which he promptly did, forcing me to be friends with creepy sales dude.
After making his purchase we met up with Brad and his son John. Brad is an old family friend whom sadly I lost track of many years ago. I was reminded as we sat and chatted over dinner then meandered through the mall how very special he is and how important he was in my life. I am sad we lost so many years but so grateful for the opportunity start a new. Brad has done a fabulous job with John, being a single parent is not an easy job and he has done it well! I had forgotten how much laughter comes with spending time with Brad. It was a great night!
Wednesday morning came and with it came the sun! Another beautiful day! After 4, FOUR, detours we finally arrived at the Shriners Hospital around 850 in the morning. Checked in and went straight in for testing. We met with the orthopedic surgeon at around 10. We talked about the the future and what it will look like for Isaiah. I learned something I never knew about my son and in the process won mother of the year, yet again! (insert sarcasm here!) Due to the Klippel-Feil and the deformities of his spine Isaiah has always had poor range of motion in his spine and neck. He has always had pain, numbness and tingling. Those are just facts of life Isaiah lives with and he has done a great job learning how to manage without the use of pain meds. One of the interesting things about Isaiah is that instead of turning his head to see what is happening around him he uses his eyes. This I knew, what I did not know is that his range of motion is slightly better than what he presents, he just doesn't use it. Why? Because when he turns his head it changes his vestibular senses causing him to become dizzy, lose his balance and feel sick to his stomach. So he has trained himself to rely on his eye movement while moving about.
We discussed possible plans. 1. Have Isaiah wear a full torso brace for 6 months and follow that with surgery in November to fuse his spine skull to tailbone. 2. Try physical therapy 2-3 time a week for six months, see if that makes a positive difference, if it does then continue PT. If it doesn't then wear the brace for 6 months and follow it with surgery in May 2011. Considering his condition either plan would be reasonable. I decided on PT. We are excited to be able to work with Steve again! He was wonderful with Isaiah following his last surgery. There are some other recommendations I will be investigating. Doc said golf will really help with range of motion so I need to call around and see if there is any way to get a discount, he also suggested bowling. Sounds funny to me but if it works I will do my best to set it up. Doc's number 1 recommendation was to start Tai Chi (spelling??) He said that would be the very best for Isaiah. It has many many benefits and is no contact form of martial arts so we would not have to worry about injury. So please, if anyone locally knows of where we can find a Tai Chi class let me know!!
Isaiah and I talked a little about the plan and what his future may look like. It is never going to be predictable or easy but we have a good plan and the best doctors in the world. So we are comfortable with the decision we made!
The trip home was long. I have never experienced being sleepy while driving. Until yesterday, I actually had to stop 4 different times so I could get out and walk around to wake up. It was a horrible feeling to know my eyes could easily close at any moment and we would be off the road. We arrived home around 430. I unpacked did a few things then changed clothes and was off to a CASA Banquet. It was a nice evening but I was exhausted! I met some people who are now excited about Dropz of Hope and would like to help out in some way. Exciting things are happening with Dropz!
Have a wonderful day everyone! I will update on the Madison situation later!
Love you all~Ang
Tuesday evening Isaiah and I made the trek over to the Mall of America. I can honestly say the only reason we go there is for the Lego Store. Isaiah had saved $117 and was very anxious to spend it on a new set. We were greeted by a creepy sales guy whose goal was clearly to become Isaiah's new BFF HA! obviously he had no clue of Isaiah's ability to make people disappear, which he promptly did, forcing me to be friends with creepy sales dude.
After making his purchase we met up with Brad and his son John. Brad is an old family friend whom sadly I lost track of many years ago. I was reminded as we sat and chatted over dinner then meandered through the mall how very special he is and how important he was in my life. I am sad we lost so many years but so grateful for the opportunity start a new. Brad has done a fabulous job with John, being a single parent is not an easy job and he has done it well! I had forgotten how much laughter comes with spending time with Brad. It was a great night!
Wednesday morning came and with it came the sun! Another beautiful day! After 4, FOUR, detours we finally arrived at the Shriners Hospital around 850 in the morning. Checked in and went straight in for testing. We met with the orthopedic surgeon at around 10. We talked about the the future and what it will look like for Isaiah. I learned something I never knew about my son and in the process won mother of the year, yet again! (insert sarcasm here!) Due to the Klippel-Feil and the deformities of his spine Isaiah has always had poor range of motion in his spine and neck. He has always had pain, numbness and tingling. Those are just facts of life Isaiah lives with and he has done a great job learning how to manage without the use of pain meds. One of the interesting things about Isaiah is that instead of turning his head to see what is happening around him he uses his eyes. This I knew, what I did not know is that his range of motion is slightly better than what he presents, he just doesn't use it. Why? Because when he turns his head it changes his vestibular senses causing him to become dizzy, lose his balance and feel sick to his stomach. So he has trained himself to rely on his eye movement while moving about.
We discussed possible plans. 1. Have Isaiah wear a full torso brace for 6 months and follow that with surgery in November to fuse his spine skull to tailbone. 2. Try physical therapy 2-3 time a week for six months, see if that makes a positive difference, if it does then continue PT. If it doesn't then wear the brace for 6 months and follow it with surgery in May 2011. Considering his condition either plan would be reasonable. I decided on PT. We are excited to be able to work with Steve again! He was wonderful with Isaiah following his last surgery. There are some other recommendations I will be investigating. Doc said golf will really help with range of motion so I need to call around and see if there is any way to get a discount, he also suggested bowling. Sounds funny to me but if it works I will do my best to set it up. Doc's number 1 recommendation was to start Tai Chi (spelling??) He said that would be the very best for Isaiah. It has many many benefits and is no contact form of martial arts so we would not have to worry about injury. So please, if anyone locally knows of where we can find a Tai Chi class let me know!!
Isaiah and I talked a little about the plan and what his future may look like. It is never going to be predictable or easy but we have a good plan and the best doctors in the world. So we are comfortable with the decision we made!
The trip home was long. I have never experienced being sleepy while driving. Until yesterday, I actually had to stop 4 different times so I could get out and walk around to wake up. It was a horrible feeling to know my eyes could easily close at any moment and we would be off the road. We arrived home around 430. I unpacked did a few things then changed clothes and was off to a CASA Banquet. It was a nice evening but I was exhausted! I met some people who are now excited about Dropz of Hope and would like to help out in some way. Exciting things are happening with Dropz!
Have a wonderful day everyone! I will update on the Madison situation later!
Love you all~Ang
Tuesday, May 18, 2010
journey north to minnesota
It is hard to believe it is that time again! Isaiah and I left today after lunch for testing and doctors appointments at Shriners and Childrens hospitals. The trip was nice we had good weather.
I don't think the anxiety that fills my being will ever get easier or go away. I never know each time if this will be the time for our nextround of surgery. On one hand I wish they would do the surgeries now so Isaiah can move on and learn how to live and function in the world in what ever condition he comes out....on the other hand I want to wait and wait and wait. The thing is that surgery has an element of long term security attached to it. His spine would then be surgically stable and I would have far less toworry about. But with surgery come many risks mainly paralysis. I guess the bottom line is I have anxiety yet still trust that God has this all planned out and Isaiahs future lies right there in the Hand of my Father....
Upon arriving in the Twin Cities my cell phone rang. It was our neuro surgeon. She is by far the absolute best in the entire world!! She knows how far we travel and she knows how difficult the test are for Isaiah and the time leading up to the testing is never easy either. ANYWAY....she was called out of town unexpectedly on a family emergency and was preparing to board a plane when she phoned. We decided together to post pone Isaiahs testing until she returns. We will still see our Orthopedic surgeon and have all those tests done on Wednesday. He will then report to Neuro doc and then decide at what time to reschedule our trip. Isaiah was so excited not to have to be at the hospital at 6 am and he was also now able to eat breakfast! It wasa long way to travel but well worth it to know the doctors care so much for Isaiah that they would call while boarding a plane just to make sure he is OK!
With a free day ahead of us we planned a day at Fort Snelling only to find out that they do not open until May 29 for the season. We were both very disappointed! A trip to the Minnesota Zoo took the place of our history filled day and off we went. Lots of walking and hills are very difficult for isaiah so after 2 and half hours we were ready to leave. I have to say though that this zoo was by far one of the best I have been to.
Back on the home front....poor Burrito has a tummy bug and spent the entire night throwing up and now is sporting a fever and a bad case of the runs...I am praying no on e else gts bit by the toxic bug!
Scott is stuck cleaning up puke and washing nasty laundry a job I always take care of. He will be ready to move out by the time I get back!
Thanks for the prayers.
Love you all!!
I don't think the anxiety that fills my being will ever get easier or go away. I never know each time if this will be the time for our nextround of surgery. On one hand I wish they would do the surgeries now so Isaiah can move on and learn how to live and function in the world in what ever condition he comes out....on the other hand I want to wait and wait and wait. The thing is that surgery has an element of long term security attached to it. His spine would then be surgically stable and I would have far less toworry about. But with surgery come many risks mainly paralysis. I guess the bottom line is I have anxiety yet still trust that God has this all planned out and Isaiahs future lies right there in the Hand of my Father....
Upon arriving in the Twin Cities my cell phone rang. It was our neuro surgeon. She is by far the absolute best in the entire world!! She knows how far we travel and she knows how difficult the test are for Isaiah and the time leading up to the testing is never easy either. ANYWAY....she was called out of town unexpectedly on a family emergency and was preparing to board a plane when she phoned. We decided together to post pone Isaiahs testing until she returns. We will still see our Orthopedic surgeon and have all those tests done on Wednesday. He will then report to Neuro doc and then decide at what time to reschedule our trip. Isaiah was so excited not to have to be at the hospital at 6 am and he was also now able to eat breakfast! It wasa long way to travel but well worth it to know the doctors care so much for Isaiah that they would call while boarding a plane just to make sure he is OK!
With a free day ahead of us we planned a day at Fort Snelling only to find out that they do not open until May 29 for the season. We were both very disappointed! A trip to the Minnesota Zoo took the place of our history filled day and off we went. Lots of walking and hills are very difficult for isaiah so after 2 and half hours we were ready to leave. I have to say though that this zoo was by far one of the best I have been to.
Back on the home front....poor Burrito has a tummy bug and spent the entire night throwing up and now is sporting a fever and a bad case of the runs...I am praying no on e else gts bit by the toxic bug!
Scott is stuck cleaning up puke and washing nasty laundry a job I always take care of. He will be ready to move out by the time I get back!
Thanks for the prayers.
Love you all!!
Tuesday, May 11, 2010
A Funeral and 21 gun salute.
May 1. May Day. ( Off track already but....I just realized I didn't do may day baskets this year nor did we receive any hhhmmm) I rode with Mother up to Woodward Iowa for the memorial service of Uncle Ralph. I had always known Uncle Ralph (his name was Junior to me) had been in the military but honestly I know little about family heritage on Mothers side. I learned that he had been wounded during the Battle of the Bulge in WW2. He had been awarded the Purple Heart and the Bronze medal of bravery. This was my first ever experience with a Full Honors Military funeral. It was an honor to be there, left me speechless...
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