Well, this is it...Jordan's IEP is in 2 hours. It's early in the morning so my brain is still kinda slow. I have spent time over the past few days reading through her past IEP's, reading through info I found online, talking with and listening to other people's thoughts and ideas, and now there is nothing more I can do.
Last night I finally realized that God is in control. He loves Jordan more than I do...although I'm not even sure that is possible!! I believe that since the day she was conceived, she has faced numerous obstacles...some of which, other children never overcome...and yet she is here...and she is strong...and she is amazing!
I know that over the past year or so I came to the realization that I needed to stop praying for Jordan to be able to eat, to be able to talk, to be "normal." I started to pray that God would work inside her and make her His. I prayed that He would use her in whatever way He needed to, not the way I wanted her to be. I prayed that He would give her what she needed, not what I wanted her to have. These prayers became extremely healing for me. I no longer worried about her future, I knew that God had that in His control.
I now realized that it is okay to hurt, to grieve, and to cry the losses in our life. But we also need to be able to get up and move on and know that it is not always up to us to determine the path for those we love. I love my husband and my kids, but I don't own and/or control them. I have been given the enormous responsibility of being a symbol of God in their lives, someone to lead them to Him, but I am NOT Him. I do not hold the responsibility of making sure everything goes as I have planned...it's not up to me.
Therefore, I lay this morning's meeting and Jordan's IEP before God. I know that I have done everything I can to prepare myself for this meeting, and I look forward to creating a workable plan for her education, but I know that God will also be present at the meeting. I believe that if I can just sit back and allow Him to participate, I will find that things will work out better in the end.
Tuesday, March 29, 2011
Friday, March 25, 2011
The Envelope...Part 2
Well, I did it. I opened up the envelope and read the report.
It was titled "Early Childhood Special Education Reevaluation"
I actually made it through the whole thing without a problem...the first time. Then I went over it again, but it wasn't so easy the second time. I took my time actually trying to process through what it said and understand it. I think it was quite accurate in describing the Jordan I know and love and yet I was astounded at the actual test results. That's when the tears started to flow and I kept re-reading parts of the report and test results.
The Brigance Diagnostic Inventory of Early Development, Second Edition (IED-II) is a standardized test that is used for children from birth to 7. She was only evaluated in cognition, language and motor skills. Her results are broken down into several subcategories, but the summary totals are as follows:
Total Motor:
Quotient (with a mean of 100) = 56
Percentile (same age kids score at/below) = <.1
Age-Equivalent = 2 years, 5 months
Total Language:
Quotient (with a mean of 100) = <57
Percentile (same age kids score at/below) = <.2
Age-Equivalent = 2 years, 1 month
Total Cognitive/Academic:
Quotient (with a mean of 100) = <57
Percentile (same age kids score at/below) = <.2
Age-Equivalent = 2 years, 3 months
The Preschool Language Scale - 4 (PLS-4) measures a young child's receptive and expressive communication ability. Average scores fall between 85-115. Her results were:
Auditory Comprehension:
Standard Score = 61
Age Equivalent = 2 years, 3 months
Expressive Communication:
Standard Score = 67
Age Equivalent = 1 year, 11 months
Total Language Score:
Standard Score = 60
Age Equivalent = 2 years, 0 months
I was extremely confused by these answers but the more I studied them the more I realized what they actually said. Basically, Jordan is performing at around 2 years old. In a comparison with other kids her age, less than 1% score lower than her. Her overall testing scores her in the area of mild mental retardation. WHAT?!?!?!?!?
I refuse to believe these scores are an accurate representation of Jordan!!!
The actual written portion describes the Jordan I see everyday. It describes things I know that she can do and the personality I know. I believe that there are many more things that she can do beyond what was described but due to her "personality," she didn't complete many of the tests. Some of the phrases that describe that are, "Jordan's lack of attention to task negatively hindered her ability to complete tasks. She was cooperative, but easily distracted. Jordan would enjoy playing with the toys and not respond to the examiner's directions.", "Jordan showed frustration during several of the tasks. When attempting to turn pages one at a time, in a book, she stood up, walked away from the book and screamed. Jordan often would flop backwards onto the floor or get up and remove herself from the testing area when tasks became challenging for her.", "When she becomes frustrated or perceives a task to be difficult, Jordan will often call out "momma" or flop down and refuse to participate." and "Jordan prefers to direct her session and shows limited cooperation with tasks that she does not choose."
These are my everyday challenges with Jordan.
This is the Jordan that not everyone else sees.
These are the things that make me unsure what is the best thing for her.
Again, they are recommending that we place her in the Early Childhood Special Education classroom. They feel that "she would benefit from the daily practice to improve her communication, fine and gross motor skills throughout the preschool setting" because she "seems to benefit from imitating others in terms of follow through and trying new activities." However, they add that she "requires visual and verbal support and multiple repetitions to improve skills that are being taught" and that "it is very important that Jordan be given verbal information with extra time to process the information and to execute the command."
Once again, I don't like that the school feels that putting her in the class would benefit her because she would "imitate others." I understand that she requires extra time and additional support, but last year when I requested a one-on-one para pro they told me there wasn't funding available for that. How is Jordan supposed to get that support in a class with 12 kids and 1 teacher and 1 assistant?
Derrick and I have been leaning toward allowing her to be in the class 2 days a week with a one-on-one, medically trained professional administering her g-tube feedings and a one-on-one para pro assisting her during class "snack-time." I now feel that they are going to push having her in class 5 days a week and I know that she needs more attention than she will receive without additional support in the classroom.
So now the craziness begins. We are scheduled for Jordan's IEP on Tuesday morning. That gives us the weekend to come up with what we consider to be an acceptable plan for Jordan for next year. We plan to cover everything from how long she can be on the bus to how much one-on-one speech we want her to receive. I guess it's a good thing we are driving up to Traverse City tomorrow...long car rides are great for conversation...well, at least as long as a movie is playing for the kids!!!
It was titled "Early Childhood Special Education Reevaluation"
I actually made it through the whole thing without a problem...the first time. Then I went over it again, but it wasn't so easy the second time. I took my time actually trying to process through what it said and understand it. I think it was quite accurate in describing the Jordan I know and love and yet I was astounded at the actual test results. That's when the tears started to flow and I kept re-reading parts of the report and test results.
The Brigance Diagnostic Inventory of Early Development, Second Edition (IED-II) is a standardized test that is used for children from birth to 7. She was only evaluated in cognition, language and motor skills. Her results are broken down into several subcategories, but the summary totals are as follows:
Total Motor:
Quotient (with a mean of 100) = 56
Percentile (same age kids score at/below) = <.1
Age-Equivalent = 2 years, 5 months
Total Language:
Quotient (with a mean of 100) = <57
Percentile (same age kids score at/below) = <.2
Age-Equivalent = 2 years, 1 month
Total Cognitive/Academic:
Quotient (with a mean of 100) = <57
Percentile (same age kids score at/below) = <.2
Age-Equivalent = 2 years, 3 months
The Preschool Language Scale - 4 (PLS-4) measures a young child's receptive and expressive communication ability. Average scores fall between 85-115. Her results were:
Auditory Comprehension:
Standard Score = 61
Age Equivalent = 2 years, 3 months
Expressive Communication:
Standard Score = 67
Age Equivalent = 1 year, 11 months
Total Language Score:
Standard Score = 60
Age Equivalent = 2 years, 0 months
I was extremely confused by these answers but the more I studied them the more I realized what they actually said. Basically, Jordan is performing at around 2 years old. In a comparison with other kids her age, less than 1% score lower than her. Her overall testing scores her in the area of mild mental retardation. WHAT?!?!?!?!?
I refuse to believe these scores are an accurate representation of Jordan!!!
The actual written portion describes the Jordan I see everyday. It describes things I know that she can do and the personality I know. I believe that there are many more things that she can do beyond what was described but due to her "personality," she didn't complete many of the tests. Some of the phrases that describe that are, "Jordan's lack of attention to task negatively hindered her ability to complete tasks. She was cooperative, but easily distracted. Jordan would enjoy playing with the toys and not respond to the examiner's directions.", "Jordan showed frustration during several of the tasks. When attempting to turn pages one at a time, in a book, she stood up, walked away from the book and screamed. Jordan often would flop backwards onto the floor or get up and remove herself from the testing area when tasks became challenging for her.", "When she becomes frustrated or perceives a task to be difficult, Jordan will often call out "momma" or flop down and refuse to participate." and "Jordan prefers to direct her session and shows limited cooperation with tasks that she does not choose."
These are my everyday challenges with Jordan.
This is the Jordan that not everyone else sees.
These are the things that make me unsure what is the best thing for her.
Again, they are recommending that we place her in the Early Childhood Special Education classroom. They feel that "she would benefit from the daily practice to improve her communication, fine and gross motor skills throughout the preschool setting" because she "seems to benefit from imitating others in terms of follow through and trying new activities." However, they add that she "requires visual and verbal support and multiple repetitions to improve skills that are being taught" and that "it is very important that Jordan be given verbal information with extra time to process the information and to execute the command."
Once again, I don't like that the school feels that putting her in the class would benefit her because she would "imitate others." I understand that she requires extra time and additional support, but last year when I requested a one-on-one para pro they told me there wasn't funding available for that. How is Jordan supposed to get that support in a class with 12 kids and 1 teacher and 1 assistant?
Derrick and I have been leaning toward allowing her to be in the class 2 days a week with a one-on-one, medically trained professional administering her g-tube feedings and a one-on-one para pro assisting her during class "snack-time." I now feel that they are going to push having her in class 5 days a week and I know that she needs more attention than she will receive without additional support in the classroom.
So now the craziness begins. We are scheduled for Jordan's IEP on Tuesday morning. That gives us the weekend to come up with what we consider to be an acceptable plan for Jordan for next year. We plan to cover everything from how long she can be on the bus to how much one-on-one speech we want her to receive. I guess it's a good thing we are driving up to Traverse City tomorrow...long car rides are great for conversation...well, at least as long as a movie is playing for the kids!!!
The Envelope
Jordan had speech this morning. It seemed like a normal session. Conner and I sat outside reading a book and we heard some talking and occasional screeches coming from her. When they were done, Jo brought her out and said that she did okay...a few temper tantrums and threw the cars once. She didn't get her to say the target word "water." She did say "wa" but would not repeat it for "wawa." It is another week of trying to target a word with her.
Then JoAnne hands me an envelope and starts to cry. She tells me this is Jordan's report and that she's sorry. She says that it was very hard for her to write and as her mom she knows it will be extremely hard to read. She told me that the tests are standardized and Jordan doesn't perform well on them, but she does not view her as the scores do.
Now I'm terrified to open the envelope and read what's inside. I know that the psychologist at the Gerber Center labeled her as between "borderline deficiency" and "dullness". He admitted that he felt that there was more potential based on seeing her, but that is what the test showed. I mentioned that to Jo a few weeks ago and she said that their scores were lower than that. I don't know if I even want to read the report.
I know that my beautiful daughter is full of life and is a ton of fun and improving every day!!! I know that I love her with my whole heart and then some!!! I know that God has created her just as she is to serve a purpose and reflect His love. I know that regardless of what some test says, I will never doubt the limits of my precious Jordan!!!
...but I'm still terrified to open the envelope...
Then JoAnne hands me an envelope and starts to cry. She tells me this is Jordan's report and that she's sorry. She says that it was very hard for her to write and as her mom she knows it will be extremely hard to read. She told me that the tests are standardized and Jordan doesn't perform well on them, but she does not view her as the scores do.
Now I'm terrified to open the envelope and read what's inside. I know that the psychologist at the Gerber Center labeled her as between "borderline deficiency" and "dullness". He admitted that he felt that there was more potential based on seeing her, but that is what the test showed. I mentioned that to Jo a few weeks ago and she said that their scores were lower than that. I don't know if I even want to read the report.
I know that my beautiful daughter is full of life and is a ton of fun and improving every day!!! I know that I love her with my whole heart and then some!!! I know that God has created her just as she is to serve a purpose and reflect His love. I know that regardless of what some test says, I will never doubt the limits of my precious Jordan!!!
...but I'm still terrified to open the envelope...
Wednesday, March 23, 2011
Compleat!!!
Yesterday, I received a call from Jordan's dietitian at the Gerber Center. After meeting with the neurodevelopmental specialist last week and mentioning that I would like to consider using a different formula than the magic mixture of 3 different ones that we have been using for 2 1/2 years. This has been a process I have been working on since last spring/summer.
Jordan's food mixture is made up of Pediasure, Pediasure with Fiber, and Boost 1.5. We get the Pediasure's through WIC and have to purchase them at the store (usually Meijer) and we get the Boost through Airway Oxygen. The problem with the Pediasure is that there have been many times I cannot find vanilla Pediasure on the shelves. I have actually driven to 3 different stores in one day in order to get what I needed to fulfill my WIC benefits before they ran out for the month. We even tried to order it through the pharmacy and through the grocery manager and both of those efforts failed.
I am excited mostly because it has bothered me for over a year that the only nutrition Jordan receives is from a bottle of artificially prepared liquid. The ingredients on the Pediasure are water, sugar (sucrose), corn maltodextrin, milk protein concentrate, high oleic safflower oil, soy oil, whey protein concentrate, medium chain triglycerides, etc. The ingredients on the Boost are water, maltodextrin, soybean oil, soybean caseinate (from milk), sugar, high oleic sunflower oil, whey protein concentrate, medium chain triglycerides, calcium caseinate, etc. I hate that during the first 3 years of Jordan's life, when nutrition is vital for brain development, she has been only getting this mixture of ingredients. I understand that it is considered "complete nutrition", however, in my opinion, it is not healthy.
The new food is called Compleat Pediatric and is manufactured by Nestle'. It is a blenderized tube feeding formula made from water, cranberry juice cocktail (from concentrate), corn syrup solids, chicken puree with natural flavors (water, dehydrated chicken meat), pea puree (water, pea powder), green bean puree (water, green bean powder), sodium caseinate (milk), peach puree, etc. I just feel so much better about giving her food that is closer to what we eat. I know that there are still artificial and manufactured ingredients in this formula, but it is so much closer to what she would be eating if she could.
The other nice thing is that we order it through the pharmacy at Meijer or Family Fare or other grocery pharmacies that accept WIC. This means that I call in and order it and a few days later, I go to the pharmacy and pick it up! LOVE IT!!!
We get her first case tomorrow and start the transition on Friday. It will take 25 days. Every 5 days we increase the amount of Compleat and decrease the amount of her current mixture. We also will be able to reduce the amount of water we give her following her feeding because we will be increasing the total amount of her feedings in order to match the calories/oz that she loses from the Boost 1.5.
Jordan's food mixture is made up of Pediasure, Pediasure with Fiber, and Boost 1.5. We get the Pediasure's through WIC and have to purchase them at the store (usually Meijer) and we get the Boost through Airway Oxygen. The problem with the Pediasure is that there have been many times I cannot find vanilla Pediasure on the shelves. I have actually driven to 3 different stores in one day in order to get what I needed to fulfill my WIC benefits before they ran out for the month. We even tried to order it through the pharmacy and through the grocery manager and both of those efforts failed.
I am excited mostly because it has bothered me for over a year that the only nutrition Jordan receives is from a bottle of artificially prepared liquid. The ingredients on the Pediasure are water, sugar (sucrose), corn maltodextrin, milk protein concentrate, high oleic safflower oil, soy oil, whey protein concentrate, medium chain triglycerides, etc. The ingredients on the Boost are water, maltodextrin, soybean oil, soybean caseinate (from milk), sugar, high oleic sunflower oil, whey protein concentrate, medium chain triglycerides, calcium caseinate, etc. I hate that during the first 3 years of Jordan's life, when nutrition is vital for brain development, she has been only getting this mixture of ingredients. I understand that it is considered "complete nutrition", however, in my opinion, it is not healthy.
The new food is called Compleat Pediatric and is manufactured by Nestle'. It is a blenderized tube feeding formula made from water, cranberry juice cocktail (from concentrate), corn syrup solids, chicken puree with natural flavors (water, dehydrated chicken meat), pea puree (water, pea powder), green bean puree (water, green bean powder), sodium caseinate (milk), peach puree, etc. I just feel so much better about giving her food that is closer to what we eat. I know that there are still artificial and manufactured ingredients in this formula, but it is so much closer to what she would be eating if she could.
The other nice thing is that we order it through the pharmacy at Meijer or Family Fare or other grocery pharmacies that accept WIC. This means that I call in and order it and a few days later, I go to the pharmacy and pick it up! LOVE IT!!!
We get her first case tomorrow and start the transition on Friday. It will take 25 days. Every 5 days we increase the amount of Compleat and decrease the amount of her current mixture. We also will be able to reduce the amount of water we give her following her feeding because we will be increasing the total amount of her feedings in order to match the calories/oz that she loses from the Boost 1.5.
A Week = 7 Days
Yes, I realize that an entire week has passed since I have posted anything during this period in which I committed to blogging daily!!! I will try to make up for it with multiple posts over the next few days :)
Wednesday, March 16, 2011
Nothing...
So, I was thinking that since we stayed home today and I wouldn't have much to report on, it would be a great day for posting some pics and videos. Unfortunately, there was a ton of stuff to do around the house after a crazy weekend followed by 2 crazy days!! And then, my wonderful husband took the little kids to church tonight so I could work on the taxes...it is only 4 weeks away!
Therefore, I have nothing major to blog about and I am too exhausted to stay up loading pics/videos...maybe tomorrow...
Therefore, I have nothing major to blog about and I am too exhausted to stay up loading pics/videos...maybe tomorrow...
Tuesday, March 15, 2011
Another Crazy Day!!!!!
Today we started off with Jordan again joining the ECSE (Early Childhood Special Education) 3 year-old class for Speech/OT group. She did great! She again had difficulty sitting still and was a talker today and kept pointing to her sleeve and saying "shirt." While she was in group, I filled out a Sensory Profile and started to fill out the forms for her upcoming IEP.
Jordan's feeding therapy with Ellen was canceled because she wasn't in today, but they ended up having an opening with Jenny (a therapist that worked with her a while back - check out the pic in the sidebar area). We headed over there and tried a little feeding bag that I found mixed in with baby feeding stuff. It has a small mesh bag with a snap cover and a handle to hold. I wanted to see if they thought it would be okay to use it for Jordan since the holes were larger than the bag we are currently using. Jenny tried it out and Jordan did very well!! She loved the banana and enjoyed the hot dog. She wasn't too excited about the Doritos or the sour gummy worm. She liked the goldfish crackers but it was too pasty and she definitely had crud in the back of her throat that didn't clear until we gave her some applesauce. Overall, it seems like a great alternative to allow Jordan more independence in her feeding. She will still have to be closely monitored and we have to remind her to take the bag out and swallow after a few seconds. We found that she loved the foods that gave her the most through the bag and disliked the ones that only gave her flavors and a small amount. I am excited to see how this works for her!!!
After that, I had 2 appointments for Mak. I came home and threw together some dinner and had a few bites to eat and then headed out with my friend Terri to attend a group discussing healthy eating for our children. I tried many of these things with our family last summer and they are great...except that they cost a lot of $$$! I did get some ideas of things to consider and even found a website with information on making homemade formula to with whole, natural foods that I could possibly use for Jordan. I have realized over the past year how much I hate having her get nothing but chemically processed fake foods. I'm not sure if this is realistic, but it is something that I want to at least think about.
I am now exhausted from 2 crazy days of appointments...and looking forward to the next 2 days that I am home with no appointments and no van to go anywhere even if I want to! It looks like I will finally have a few days to focus on doing some school with Conner (and Jordan), cleaning the house (and letting them help), and enjoying my kids and being their mom!!!
Jordan's feeding therapy with Ellen was canceled because she wasn't in today, but they ended up having an opening with Jenny (a therapist that worked with her a while back - check out the pic in the sidebar area). We headed over there and tried a little feeding bag that I found mixed in with baby feeding stuff. It has a small mesh bag with a snap cover and a handle to hold. I wanted to see if they thought it would be okay to use it for Jordan since the holes were larger than the bag we are currently using. Jenny tried it out and Jordan did very well!! She loved the banana and enjoyed the hot dog. She wasn't too excited about the Doritos or the sour gummy worm. She liked the goldfish crackers but it was too pasty and she definitely had crud in the back of her throat that didn't clear until we gave her some applesauce. Overall, it seems like a great alternative to allow Jordan more independence in her feeding. She will still have to be closely monitored and we have to remind her to take the bag out and swallow after a few seconds. We found that she loved the foods that gave her the most through the bag and disliked the ones that only gave her flavors and a small amount. I am excited to see how this works for her!!!
After that, I had 2 appointments for Mak. I came home and threw together some dinner and had a few bites to eat and then headed out with my friend Terri to attend a group discussing healthy eating for our children. I tried many of these things with our family last summer and they are great...except that they cost a lot of $$$! I did get some ideas of things to consider and even found a website with information on making homemade formula to with whole, natural foods that I could possibly use for Jordan. I have realized over the past year how much I hate having her get nothing but chemically processed fake foods. I'm not sure if this is realistic, but it is something that I want to at least think about.
I am now exhausted from 2 crazy days of appointments...and looking forward to the next 2 days that I am home with no appointments and no van to go anywhere even if I want to! It looks like I will finally have a few days to focus on doing some school with Conner (and Jordan), cleaning the house (and letting them help), and enjoying my kids and being their mom!!!
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