If you would have told me 4 years ago that I would be medicating my child to treat ADHD I would have scoffed and presented you with a bottle of fish oil. Just one of many alternative treatments for attention deficit disorders. I have the Down syndrome to thank for keeping me humble and teaching me that I don't know as much as I'd like to think I do.
I'm sure other parents of children with Down syndrome wonder if their child's attention span is typical of a child with developmental delays or has it gone into the realm of ADD/ADHD. I'm not a medical expert, but I can tell you how we made that determination.
In September (Goldie was 3 1/2) I noticed that I was redirecting her towards acceptable activities every couple of minutes. In addition to the redirection and positive reinforcement, we also started explaining consequences and using time-outs. Goldie responded very well, but it illuminated the fact that the problem was not behavioral. Even when I was sitting on the floor playing with her, she wasn't able to stick with an activity for more than 2 minutes.
My next thought was that the problem was developmental. Was I expecting too much from her? Were her developmental delays responsible for her lack of focus? I did what all mothers do and began comparing her to my other children at that age. My oldest could sit and listen to me read all day at the age of two. Daughter number two couldn't sit through anything longer than a board book until she was 5 and would not watch t.v. until she was 4. Yet, she could still stay on task longer than Goldie. Which brings us to Hank. At 15 months he will sit and play with a toy for 3-10 minutes.
During this time I happened to be talking with a friend who has a daughter with DS that is a year older than Goldie. We both agreed that our children needed help choosing an activity, but in Goldie's case it would only keep her occupied for 2 minutes. Times like these are when I wish I was active in a real life DS support group so that I could have more exposure to other children.
For as long as I can remember, I kept telling myself, that when Goldie's vision and fine motor skills improved she would be able to sit and play. Her vision improved tremendously and she is able to do many things, but her ability to focus on an activity never improved. As she grows we see her making progress in so many areas. Attention has just not been one of them.
After implementing a list of alternative remedies as long as my arm and finding no relief I placed calls to Goldie's pediatrician, the Psychology department and the Down Syndrome Center at Pittsburgh Children's Hospital. The DS center was very helpful. One of the first things they asked was for Goldie's evaluation scores from her IEP. I know most of us don't like these evaluations, but I was glad to see that the scores were useful to ME for once. In most areas Goldie had a 25% or less delay. Except in Attention and Memory where she had a 50% delay.
The final step was having her therapists complete evaluation forms for the Down Syndrome Center. I recieved my own parent survey to fill out. The results? In her doctor's words "She is off the charts for ADHD. I am surprised she is as well behaved as she is. I expected her to be all over the place." (Thanks go to the iPad for keeping Goldie seated. She must have gone through 10 different apps in just as many minutes.) He pointed to the chart and showed me the range in which children with DS normally fall and the range in which Goldie was. We discussed treatment options and possible interactions between Goldie's supplements and medications. Later, I received a large packet in the mail on Down syndrome and ADHD. What I've read so far has been both disturbing and helpful.
I'm sure your wondering how the things are going with the medication. While I worry tremendously about the long term consequences and side effects, right now things are much better. Goldie has not had any negative side effects from the medication and I feel like it has bought us some time to continue exploring other treatments.
If you are looking for more information here is a link to get you started.
http://www.riverbendds.org/index.htm Click on Medical Series, then ADHD.
Showing posts with label Special Needs. Show all posts
Showing posts with label Special Needs. Show all posts
Sunday, April 10, 2011
Friday, January 14, 2011
The Highs and Lows of Applying for Waiver Services
One of my grandmother's prized possessions was a dining room suite she was given from her sister. The story goes that it was an expensive antique that her sister didn't have space for after her divorce so she gave it to my grandparents for helping her out. It's four pieces comprised 70% of the space in her dining room. The wood was thick and dark and carved in a gothic style that was completely out of place in her little cape cod home. In addition to the table was a long buffet against one wall and a china cupboard in the corner.
What I remember most about this table is not the carefully planned holiday meals. It is the layers of tablecloths, placemats and finally papers. Growing up I would walk around the table wondering about all the papers, mail, index cards, and sticky notes that were neatly laid all around it. In the adjacent room was a tiny office with a bulletin board and filing cabinet. The bulletin board was filled with more index cards and a calendar. My grandmother, like myself, was the type of person who needed to see what she had to do next. I think we would be called pile-ers.
When my husband and I were dating he mentioned how unorganized he thought this was. He couldn't understand why someone so neat and tidy as my grandmother would allow her antique dining room set to be blanketed with papers.
Today, my husband I both understand her system. She had a child with special needs.
I'm sitting here with 12 pages of notes detailing phone calls, agencies, numbers etc... In the last two months I've made close to 30 phone calls. All in search of services and supports for Goldie. Our family needs respite care. To get that she has to qualify for waiver services. That requires a psychological evaluation and an IQ test. To make it more complicated "they" can't find a doctor that will take Goldie's medicaid. The details of why are so tedious I don't even want to type them.
I'd rather talk about paper. I write everything down while on the phone. A name and number isn't enough. I need to know why I'm calling that person. I need to document what I'm told. Which brought me to my low point of the day. (Ironically,it wasn't holding my daughter while she wretched into a bucket at 3am.) It was the woman at the Department of Public Welfare who bore the brunt of my sleepless night. She casually told me Goldie's medicaid case was closing tomorrow and she wouldn't be covered anymore. No reason given. Then she began rattling off names and numbers and what I should ask these people to do. I kept telling her to slow down. (I was nursing Hank in one arm and writing with the other.) Finally, I began to cry and screamed at her to just STOP. "I have 4 kids, I can't remember it ALL. I have to write everything down."
What good does is it do me to call Mrs. Taylor if I can't remember that she is the person with the special list of doctors that will accept medicaid.
Except, she's not. She explained that yes, she has a list, but they probably won't take Goldie's medicaid. Then, the best part of my day, was when she told me "the system is horrible at best". At last, someone who will admit it!
(I just want to add that Goldie's medicaid does not run out tomorrow. She has another 30 days of coverage and they already have her renewal information in the system. So, she is good to go. No, worries.)
What I remember most about this table is not the carefully planned holiday meals. It is the layers of tablecloths, placemats and finally papers. Growing up I would walk around the table wondering about all the papers, mail, index cards, and sticky notes that were neatly laid all around it. In the adjacent room was a tiny office with a bulletin board and filing cabinet. The bulletin board was filled with more index cards and a calendar. My grandmother, like myself, was the type of person who needed to see what she had to do next. I think we would be called pile-ers.
When my husband and I were dating he mentioned how unorganized he thought this was. He couldn't understand why someone so neat and tidy as my grandmother would allow her antique dining room set to be blanketed with papers.
Today, my husband I both understand her system. She had a child with special needs.
I'm sitting here with 12 pages of notes detailing phone calls, agencies, numbers etc... In the last two months I've made close to 30 phone calls. All in search of services and supports for Goldie. Our family needs respite care. To get that she has to qualify for waiver services. That requires a psychological evaluation and an IQ test. To make it more complicated "they" can't find a doctor that will take Goldie's medicaid. The details of why are so tedious I don't even want to type them.
I'd rather talk about paper. I write everything down while on the phone. A name and number isn't enough. I need to know why I'm calling that person. I need to document what I'm told. Which brought me to my low point of the day. (Ironically,it wasn't holding my daughter while she wretched into a bucket at 3am.) It was the woman at the Department of Public Welfare who bore the brunt of my sleepless night. She casually told me Goldie's medicaid case was closing tomorrow and she wouldn't be covered anymore. No reason given. Then she began rattling off names and numbers and what I should ask these people to do. I kept telling her to slow down. (I was nursing Hank in one arm and writing with the other.) Finally, I began to cry and screamed at her to just STOP. "I have 4 kids, I can't remember it ALL. I have to write everything down."
What good does is it do me to call Mrs. Taylor if I can't remember that she is the person with the special list of doctors that will accept medicaid.
Except, she's not. She explained that yes, she has a list, but they probably won't take Goldie's medicaid. Then, the best part of my day, was when she told me "the system is horrible at best". At last, someone who will admit it!
(I just want to add that Goldie's medicaid does not run out tomorrow. She has another 30 days of coverage and they already have her renewal information in the system. So, she is good to go. No, worries.)
Sunday, January 31, 2010
It's 2010 People!!
I can't recall if I've mentioned, on here, that I volunteer helping breastfeeding moms when I'm supposed to be cooking dinner in my spare time. I may only get one or two calls a month. Unless, that month has a major holiday or I have just given birth. Then my phone will ring nonstop and I'll have to order my children not to answer any number they don't recognize. (Please don't think I'm horrible, its just that it took twice as long to convince Hank that its bedtime than it did to write this paragraph. And I can hear he still doesn't believe me ;) Goldie blessed me by going to bed at 8, which means she'll wake up screaming any second. See, I need every minute in my day.)
Yesterday I decided to answer a call that I had already ignored once. Well, I must have taken too long navigating the farm animals and Zhu Zhu pets because I missed it again. So, I did what I never do, and called this unknown person to see what they needed.
It was indeed a breastfeeding help call. A grandmother calling for her daughter. She began describing a baby that, although full term, had medical complications and was transported to a NICU in a larger city. She seemed unsure of what to tell me or where to even begin. The mother had an emergency c-section and the nurses had refused to show her how to pump or get a lactation consultant to see her. That's when my DS mommy radar went up.
Me "I hope you don't mind me asking, but does the baby have a suspected diagnosis. Its unusual for a mother to not receive help after several requests."
Baby's Grandma "Well, yes he does."
Me "Its okay, I understand, I have a daughter with Down syndrome"
BG "Oh, that's what they think he has. You really do understand. I'm so glad I called you."
Do you get what happened to her daughter? The nurses decided that because her baby has DS "he won't be able to breastfeed anyway" or "it won't matter". Then again maybe they were too busy feeling sorry for her and didn't want to "burden" her with pumping for her baby. This story is very familiar to me. I have a friend who experienced the same thing almost 4 years ago when her daughter was born. It was a different hospital in a different state, but the same attitudes. That talk a friend and I gave last year, we need to keep giving it.
Yesterday I decided to answer a call that I had already ignored once. Well, I must have taken too long navigating the farm animals and Zhu Zhu pets because I missed it again. So, I did what I never do, and called this unknown person to see what they needed.
It was indeed a breastfeeding help call. A grandmother calling for her daughter. She began describing a baby that, although full term, had medical complications and was transported to a NICU in a larger city. She seemed unsure of what to tell me or where to even begin. The mother had an emergency c-section and the nurses had refused to show her how to pump or get a lactation consultant to see her. That's when my DS mommy radar went up.
Me "I hope you don't mind me asking, but does the baby have a suspected diagnosis. Its unusual for a mother to not receive help after several requests."
Baby's Grandma "Well, yes he does."
Me "Its okay, I understand, I have a daughter with Down syndrome"
BG "Oh, that's what they think he has. You really do understand. I'm so glad I called you."
Do you get what happened to her daughter? The nurses decided that because her baby has DS "he won't be able to breastfeed anyway" or "it won't matter". Then again maybe they were too busy feeling sorry for her and didn't want to "burden" her with pumping for her baby. This story is very familiar to me. I have a friend who experienced the same thing almost 4 years ago when her daughter was born. It was a different hospital in a different state, but the same attitudes. That talk a friend and I gave last year, we need to keep giving it.
Tuesday, August 11, 2009
Disabled Students are Spanked More
I was a little surprised to read this.
When I was growing up, corporal punishment was still allowed in Pennsylvania. I experienced it first hand. In first grade I was paddled for jumping off of a table in the classroom while the teacher was talking in the hallway. I didn't think it was a big deal. The paddling I got from my teacher was nothing compared to what my dad could dole out at home. (I can't begin to imagine Hank treating our children this way.)
Then, in second grade, I had one of those teachers everyone talks about. The one who would put kids in the closet and tape over their mouths. A friend spoke to me while we were supposed to be quietly waiting in line. The teacher slapped us both across the face for this. I didn't tell my mom, until my friend's mother called to let her know what happened. My mom wrote a letter to the school and it was supposed to be put in her file. My brother had the same teacher 5 years later. Again there were problems with her being physical with the kids. And to all those who think teachers like this don't exist anymore, my daughter had her for a substitute last year. She spent the day yelling at the class to shut-up.
And how about my gym teacher that had children sign the paddle after he spanked them with it?
I'm glad to see Pennsylvania banned this type of discipline. However, I wonder how many children with disabilities are still subject to corporal punishment? I know of a mother whose son was slammed against the wall by an aide. He has autism. The school would argue that they were keeping him safe because he was trying to leave the building. I don't have a child with autism, but have managed to keep all of my children safe without hurting them in the process. It takes creativity and planning sometimes, but I think it can be done.
When I was growing up, corporal punishment was still allowed in Pennsylvania. I experienced it first hand. In first grade I was paddled for jumping off of a table in the classroom while the teacher was talking in the hallway. I didn't think it was a big deal. The paddling I got from my teacher was nothing compared to what my dad could dole out at home. (I can't begin to imagine Hank treating our children this way.)
Then, in second grade, I had one of those teachers everyone talks about. The one who would put kids in the closet and tape over their mouths. A friend spoke to me while we were supposed to be quietly waiting in line. The teacher slapped us both across the face for this. I didn't tell my mom, until my friend's mother called to let her know what happened. My mom wrote a letter to the school and it was supposed to be put in her file. My brother had the same teacher 5 years later. Again there were problems with her being physical with the kids. And to all those who think teachers like this don't exist anymore, my daughter had her for a substitute last year. She spent the day yelling at the class to shut-up.
And how about my gym teacher that had children sign the paddle after he spanked them with it?
I'm glad to see Pennsylvania banned this type of discipline. However, I wonder how many children with disabilities are still subject to corporal punishment? I know of a mother whose son was slammed against the wall by an aide. He has autism. The school would argue that they were keeping him safe because he was trying to leave the building. I don't have a child with autism, but have managed to keep all of my children safe without hurting them in the process. It takes creativity and planning sometimes, but I think it can be done.
Saturday, May 9, 2009
"High Functioning" and why I don't like it
I've been meaning to write about this, so after reading Megan's post I thought now would be a good time.
Following Goldie's birth, we heard a lot of comments like, "maybe she just has a mild case of DS" or "maybe it won't be too bad" or "she doesn't have all the physical feature so it must not be as serious". I don't like hearing these things, but I usually assume that people mean well and I explain that DS doesn't come in varrying degrees. Every child has their own strengths and abilities.
When Goldie was around 6 or 7 months, I was really worried. Laying awake at night,crying worried. I really thought she was blind and hearing impaired. She couldn't see further than 3 feet away and she wasn't turning toward sounds. I held her all the time because I didn't want her to think she was alone. Having her pictures taken was gut wrenching because she had no idea where the person with the camera was. No amount of singing, clapping or toy waving registered any response. Her eyes would search all over the room for...something.
It was during this time that this person stopped to drop off some things she had bought for the girls. Now, I don't want to air our family's dirty laundry in public, but let me say that this an immediate family member who sees Goldie at least twice a week. She aked how Goldie's therapies were going and then she said "Well, I'm sure she'll be fine. She's high functioning. You can just tell she's high functioning."
What I heard was "I hope she's high functioning because her life will have more value and I don't know if I can love her if she's not."
I didn't know what to say, so I nodded like a bobble head while opening the door for her.
What I really wanted to say was "Are you effing kidding me? My kid can't even see you from four feet away. If you spent more than 5 minutes with her you would know all the things she can't do. I don't care if she's high functioning. I love her anyway. I have a love for her that others will never know." I know part of that sounds really negative, but I was very aware that she wasn't doing most of the things her sisters did at the same age. As Goldie's mom I've learned to walk a fine line between reality and high expecatations while always trying to stay positive and optomistic for her future.
While working on our presentation last month, my friend Sarah, sent me a link to Disability is Natural with information on people first language. Then this week she forwarded a copy of this article. I enjoyed reading this because she brings up many thoughts and feelings I've had over the last 2 years.
I'm overjoyed by the progress Goldie has made. We've been told she is still legally blind, but I'm amazed everyday by what she CAN see now! She hears everything. We even have to spell in front of her. (Don't say popcorn unless you plan on making it!) But, I still see people trying to size her up or compare her abilities to others. I've also seen the pity when they ask if she is doing something and I say no. I know they feel more sorry for Goldie or me than we will ever feel for ourselves.
Following Goldie's birth, we heard a lot of comments like, "maybe she just has a mild case of DS" or "maybe it won't be too bad" or "she doesn't have all the physical feature so it must not be as serious". I don't like hearing these things, but I usually assume that people mean well and I explain that DS doesn't come in varrying degrees. Every child has their own strengths and abilities.
When Goldie was around 6 or 7 months, I was really worried. Laying awake at night,crying worried. I really thought she was blind and hearing impaired. She couldn't see further than 3 feet away and she wasn't turning toward sounds. I held her all the time because I didn't want her to think she was alone. Having her pictures taken was gut wrenching because she had no idea where the person with the camera was. No amount of singing, clapping or toy waving registered any response. Her eyes would search all over the room for...something.
It was during this time that this person stopped to drop off some things she had bought for the girls. Now, I don't want to air our family's dirty laundry in public, but let me say that this an immediate family member who sees Goldie at least twice a week. She aked how Goldie's therapies were going and then she said "Well, I'm sure she'll be fine. She's high functioning. You can just tell she's high functioning."
What I heard was "I hope she's high functioning because her life will have more value and I don't know if I can love her if she's not."
I didn't know what to say, so I nodded like a bobble head while opening the door for her.
What I really wanted to say was "Are you effing kidding me? My kid can't even see you from four feet away. If you spent more than 5 minutes with her you would know all the things she can't do. I don't care if she's high functioning. I love her anyway. I have a love for her that others will never know." I know part of that sounds really negative, but I was very aware that she wasn't doing most of the things her sisters did at the same age. As Goldie's mom I've learned to walk a fine line between reality and high expecatations while always trying to stay positive and optomistic for her future.
While working on our presentation last month, my friend Sarah, sent me a link to Disability is Natural with information on people first language. Then this week she forwarded a copy of this article. I enjoyed reading this because she brings up many thoughts and feelings I've had over the last 2 years.
I'm overjoyed by the progress Goldie has made. We've been told she is still legally blind, but I'm amazed everyday by what she CAN see now! She hears everything. We even have to spell in front of her. (Don't say popcorn unless you plan on making it!) But, I still see people trying to size her up or compare her abilities to others. I've also seen the pity when they ask if she is doing something and I say no. I know they feel more sorry for Goldie or me than we will ever feel for ourselves.
Tuesday, April 28, 2009
Saturday was awesome!!!
Whew! This weekend wiped me out. Mentally and physically.
Friday night I got together with my friend, Sarah, to go over our presentation. Sarah is amazing, she wrote most of our presentation and really contributed so much with her experiences. She was very impressed by the pictures some of you sent! These images were an integral part of the presentation. I wanted everyone to leave with a picture of a baby with DS actually breastfeeding. Too many people don't think our babies will really be able to nurse. I think this can be a self fulfilling prophecy and I wanted to change the picture they may have had in their minds.
Saturday morning we spoke from 9 until noon on the impact of a Down syndrome diagnosis on breast feeding at the LLL of Western PA Area Conference. We explored both the emotional and the physical difficulties that can be encountered. It was an amazing morning. The women we spoke to had a lot of questions. I'm glad we were able to provide them with accurate information. There was even a genetic counselor in the audience! She fielded some of the technical prenatal diagnosis questions for us. I even asked her a question or two myself. There was a great discussion on the 90-92% termination rate of babies with a prenatal diagnosis of DS. That shocked everyone. During this part of the presentation were pictures of Sarah's daughter. I wanted to get past the image of a fetus and show the child with Down syndrome. I'm hoping it was subtle, yet effective.
We provided information about the various health issues that can be present, if they would affect breast feeding, and how breast feeding can help. We explained that a pumping mom is a breast feeding mom and really needs to be supported. My co-speaker brought up a great point about kids with immune system challenges and how to make meetings a friendly environment for them. One way is to have sick policies so they won't be exposed to a virus that could render their child ill for weeks.
I learned something. One of the women was a postpartum nurse at a well known women's hospital. She explained that babies with DS born at that hospital are sent to a separate floor. (Huh?) They don't want the mothers to see the typical babies and be sad. (What?) I found her later in the day and asked her if I had this right. Yes, they are not sent to the nursery on the postpartum floor. But, I'm still confused. I thought they had rooming in. I take Goldie to the DS clinic next month, maybe they can explain it better.
We ended up with almost double the people we had anticipated. Good thing I made two packets for each person. The packets included brochures for local and national resources and support agencies, general Down syndrome information and health care guidelines, information about heart conditions, breast feeding articles, people first language,the beautiful DSANV calendars and where to find even more information. DSRTF sent me a huge box of newsletters and DSAV sent some brochures. I'm still waiting to hear from the groups in western PA that I contacted.
The rest of the day was spent chasing Goldie around a hot stuffy hotel. Our weather has been a lot warmer than normal so the indoor poolside lunch was like eating in a sauna. While I drank a lot of water, Goldie was too busy to be bothered by drinking or nursing. I think she was dehydrated the next day, probably from sweating. Go me. Only I can bring a nursing toddler home from a breast feeding conference dehydrated. She's back to her signing dancing self now!
Oh, I almost forgot, well actually I did. The gift basket I put together daaaays ahead of time. I left it sitting in our enclosed porch where thekids Goldie wouldn't get it. sigh. If I had put it together at the last minute I would have remembered it. That's what I get for trying to stay on top of things!
Friday night I got together with my friend, Sarah, to go over our presentation. Sarah is amazing, she wrote most of our presentation and really contributed so much with her experiences. She was very impressed by the pictures some of you sent! These images were an integral part of the presentation. I wanted everyone to leave with a picture of a baby with DS actually breastfeeding. Too many people don't think our babies will really be able to nurse. I think this can be a self fulfilling prophecy and I wanted to change the picture they may have had in their minds.
Saturday morning we spoke from 9 until noon on the impact of a Down syndrome diagnosis on breast feeding at the LLL of Western PA Area Conference. We explored both the emotional and the physical difficulties that can be encountered. It was an amazing morning. The women we spoke to had a lot of questions. I'm glad we were able to provide them with accurate information. There was even a genetic counselor in the audience! She fielded some of the technical prenatal diagnosis questions for us. I even asked her a question or two myself. There was a great discussion on the 90-92% termination rate of babies with a prenatal diagnosis of DS. That shocked everyone. During this part of the presentation were pictures of Sarah's daughter. I wanted to get past the image of a fetus and show the child with Down syndrome. I'm hoping it was subtle, yet effective.
We provided information about the various health issues that can be present, if they would affect breast feeding, and how breast feeding can help. We explained that a pumping mom is a breast feeding mom and really needs to be supported. My co-speaker brought up a great point about kids with immune system challenges and how to make meetings a friendly environment for them. One way is to have sick policies so they won't be exposed to a virus that could render their child ill for weeks.
I learned something. One of the women was a postpartum nurse at a well known women's hospital. She explained that babies with DS born at that hospital are sent to a separate floor. (Huh?) They don't want the mothers to see the typical babies and be sad. (What?) I found her later in the day and asked her if I had this right. Yes, they are not sent to the nursery on the postpartum floor. But, I'm still confused. I thought they had rooming in. I take Goldie to the DS clinic next month, maybe they can explain it better.
We ended up with almost double the people we had anticipated. Good thing I made two packets for each person. The packets included brochures for local and national resources and support agencies, general Down syndrome information and health care guidelines, information about heart conditions, breast feeding articles, people first language,the beautiful DSANV calendars and where to find even more information. DSRTF sent me a huge box of newsletters and DSAV sent some brochures. I'm still waiting to hear from the groups in western PA that I contacted.
The rest of the day was spent chasing Goldie around a hot stuffy hotel. Our weather has been a lot warmer than normal so the indoor poolside lunch was like eating in a sauna. While I drank a lot of water, Goldie was too busy to be bothered by drinking or nursing. I think she was dehydrated the next day, probably from sweating. Go me. Only I can bring a nursing toddler home from a breast feeding conference dehydrated. She's back to her signing dancing self now!
Oh, I almost forgot, well actually I did. The gift basket I put together daaaays ahead of time. I left it sitting in our enclosed porch where the
Monday, April 6, 2009
IFSP (I think)
Goldie's IFSP is in the morning. Please say a prayer that I have both wisdom and composure. I was told of the IFSP date by Goldie's PT. Her service co-ordinator has yet to call me. I don't think I've seen or spoken to her since January! I do not plan to confront her about this tomorrow. I don't think it would be appropriate in front of the therapists. But, I am ticked. I should have been the first person called and then a letter is supposed to be sent out to each therapist. Last year, she didn't invite the Vision Therapist. I complained to her supervisor because my kid is legally blind and was receiving VT every week. How do you forget that?
So, this year the VT called her to find out the date of the IFSP. She won't be able to make it, but I'm ok with it because we are decreasing services in that area. At least until we see what the new eye dr. wants to do as far as surgery goes. IF she has surgery, Goldie will need VT to learn how to use her new vision.
Goldie's evals were done last month, so we won't be doing them tomorrow, but I will get the final results. I know where she stands on most of them already, so I don't expect any suprises there. Last year, everybody did all the evals at once and I wanted to cry by the time they left. Ugh.
I also spoke with the SC's supervisor last month at a meeting she happened to be at. So, I'm still suprised that she hasn't called to confirm tomorrow's meeting. I WILL be asking for a new SC after this, in writing. She is not equipped to help us through transition when Goldie turns 3. No way.
On a happy note, I told Swatcho she could make monkey bread in the morning for everyone. She has a recipe she's been dying to try.
So, this year the VT called her to find out the date of the IFSP. She won't be able to make it, but I'm ok with it because we are decreasing services in that area. At least until we see what the new eye dr. wants to do as far as surgery goes. IF she has surgery, Goldie will need VT to learn how to use her new vision.
Goldie's evals were done last month, so we won't be doing them tomorrow, but I will get the final results. I know where she stands on most of them already, so I don't expect any suprises there. Last year, everybody did all the evals at once and I wanted to cry by the time they left. Ugh.
I also spoke with the SC's supervisor last month at a meeting she happened to be at. So, I'm still suprised that she hasn't called to confirm tomorrow's meeting. I WILL be asking for a new SC after this, in writing. She is not equipped to help us through transition when Goldie turns 3. No way.
On a happy note, I told Swatcho she could make monkey bread in the morning for everyone. She has a recipe she's been dying to try.
Friday, March 20, 2009
March 21st
March 21st is World Down Syndrome Day. It was also Goldie's due date and my grandmother's birthday. But, Goldie wanted her own day so she didn't wait until then.
Here she is, looking officially "2" in her shirt from The Rocking Pony. Doesn't Karen do great work? Now if I could get 6 more I wouldn't have to constantly answer the "how old is she" question.
I thought this would be a good day to show you all what I found in my first grader's science book.
Pretty cool, huh? There were also pictures of other children with special needs besides Down syndrome. It is the 2000 edition of the McGraw Hill first grade science book. I'd like to get my hands on a recent edition and see if they still include children of all abilities in their materials.
Here she is, looking officially "2" in her shirt from The Rocking Pony. Doesn't Karen do great work? Now if I could get 6 more I wouldn't have to constantly answer the "how old is she" question.
I thought this would be a good day to show you all what I found in my first grader's science book.
Pretty cool, huh? There were also pictures of other children with special needs besides Down syndrome. It is the 2000 edition of the McGraw Hill first grade science book. I'd like to get my hands on a recent edition and see if they still include children of all abilities in their materials.
Monday, February 23, 2009
The "R" Word
I was hanging out with the girls tonight when Mini Me told me about something that happened at school today. One of the girls was "teaching" the other kids how to hit themselves in the chest with their hand while saying retard. I don't think I've seen that move since I was in grade school. I explained why it was wrong and got online with her to show her the shirts Lisa at Finnian's Journey and her son made. But, I was pleasantly surprised to find Lisa's recent post.
Just like Lisa, I'm shocked at the girl who initiated this. You see, her parents are leaders at the Vacation Bible School my girls attend every summer. When I pick them up, her dad is always up there singing with the kids. On the other hand, Hank only goes to church at Christmas and Easter. He's also a truck driver and has a mouth like one.Sorry, but its true, as the daughter of a sailor this didn't phase me when I met him. The irony of this is not lost on me. Now, I also know as a parent sometimes our children do things that do not reflect our values. My children have come home and told me some awful things that were said by their grandparents. I'm just glad they knew what they were hearing is wrong and not to repeat it.
Oh, and if you want to read more posts about the "R" word Joyce had something to say, too.
I'm hoping Mini Me will be inspired by Lisa's blog and stand up to the kids at school. But, I don't think it will happen tomorrow. She still feels like "the new kid" and is pretty shy. I'm wondering if I talked to the guidance counselor if she has a lesson that would be appropriate for this situation. I don't want to see kids get in trouble, I want them to learn why using the "R" word is wrong. I want them to know the people they are hurting and be able to empathize with them. I have a chance to volunteer at the school next month. Maybe it wouldn't be a bad idea to go and bring Goldie with me.
Just like Lisa, I'm shocked at the girl who initiated this. You see, her parents are leaders at the Vacation Bible School my girls attend every summer. When I pick them up, her dad is always up there singing with the kids. On the other hand, Hank only goes to church at Christmas and Easter. He's also a truck driver and has a mouth like one.
Oh, and if you want to read more posts about the "R" word Joyce had something to say, too.
I'm hoping Mini Me will be inspired by Lisa's blog and stand up to the kids at school. But, I don't think it will happen tomorrow. She still feels like "the new kid" and is pretty shy. I'm wondering if I talked to the guidance counselor if she has a lesson that would be appropriate for this situation. I don't want to see kids get in trouble, I want them to learn why using the "R" word is wrong. I want them to know the people they are hurting and be able to empathize with them. I have a chance to volunteer at the school next month. Maybe it wouldn't be a bad idea to go and bring Goldie with me.
Thursday, February 19, 2009
IQ Tests Suck
I had a meeting with Mini Me's teachers, principal and school psychologist. I was given the scores from her IQ test. It was suprising. I expected her to do better on one portion than the other given her struggles with math and following directions. But, her scores were very similar. So, according to their numbers, she should have difficulties with language arts, reading, spelling etc...
I just can't reconcile that information with the daughter I KNOW. Language has always been her thing. She loves to read at home and excels in reading, grammer, vocabulary and spelling at school. My only guess is that her lack of skills in the direction following department is impacting her test score.
The principal was very positive and genuinely wants to help. He reminded me that there are multiple types of intelligence and this test only measures 2 of them. He will be working with Mini Me himself on some math concepts, since they don't have the staff available at the right time of day.
This was one of those times that I was so thankful for having a child with DS. I know from Goldie's evaluations that how a child performs on one day, at one moment in time, is NO indicator of their true potential or how they will perform 6 months from now. (I told them this) And if those numbers are right, then I guess it shows how far children can go with loving, involved parents who expect the best.
I just can't reconcile that information with the daughter I KNOW. Language has always been her thing. She loves to read at home and excels in reading, grammer, vocabulary and spelling at school. My only guess is that her lack of skills in the direction following department is impacting her test score.
The principal was very positive and genuinely wants to help. He reminded me that there are multiple types of intelligence and this test only measures 2 of them. He will be working with Mini Me himself on some math concepts, since they don't have the staff available at the right time of day.
This was one of those times that I was so thankful for having a child with DS. I know from Goldie's evaluations that how a child performs on one day, at one moment in time, is NO indicator of their true potential or how they will perform 6 months from now. (I told them this) And if those numbers are right, then I guess it shows how far children can go with loving, involved parents who expect the best.
Sunday, February 15, 2009
Playgroup
Occasionally, I get surveys from our EI agency or the county. I always write in the comments section that I would like them to sponsor a playgroup. My mom ran a playgroup at our church when Mini Me and Swatcho were younger. She had an art center, water or rice table, housekeeping area, puzzles, circle time and snack time. It was fabulous. She has since moved on and I haven't found anything comparable.
Then in October Goldie's Service Coordinator gives me a call to say that she has been invited to join a playgroup once a month. She thought I would have already heard since the agency my mom is working for is organizing the playgroup. So, I called Mom to get the scoop. She tells me that the playgroup is for Early Head Start families and the county asked them to allow 5 families from EI to participate. Not everyone wanted to collaborate with EI, but Mom told them they would do it as long as Goldie was one of the 5 kids. So here's how it went:
Week One: Circle time, free play with toys, craft, more free play in gym area, eat lunch, read a story
Week Two: Circle time, free play with toyswhile listening to immature mother brag about how advanced her 5 month old is because he can pull to stand and crawl, play with balls in gym, eat lunch, read a story
Week Three: Kids have free play while parents learn how to plan a meal, eat lunch, read a story
But, I was really looking forward to the one on one time with my Goldie Girl.
The Good:
~ Goldie played with some toys we don't have a lot of, like cars. She even imitated the boys crawling and pushing the cars, which is something we've been working on in PT.
~ It was great to see how much progress Goldie made from month to month
~ Lunch was free and they were very accommodating of our food allergy
~ This month Goldie had a blast running around the gym (I skipped the story and let her run loose, setting a bad example for all the other parents and children)
~ One week, she ate off of a paper plate and even tried to use utensils
~ I got to play with my baby and just my baby :)
The Not So Good:
~ Immature mothers. They were just annoying. Even when I was a young, new mom, I never was a baby bragger. People can see my kids, I don't need to point out that they are walking or talking. Those things are kind of obvious and don't define my self worth. I decided I would go in with blinder on, ignore them and just focus on being with Goldie.
~ Hank has to watch Swatcho because she isn't allowed to come. It is also in the morning and sometimes Swatcho ends up not doing school that day because we also have PT that afternoon.
~ I'm the only mom who went consistently and I think the only one whose child has a diagnosis. I think the other EI kids just have delays because I couldn't tell who they were. I wonder if they would have chosen Goldie if her grandma hadn't made them?
~ Its really just a government sponsored parenting class disguised as a play group. Reading a book, planning a meal...Don't. waste. my. time. Goldie's book collection rivals that of our public library and I don't care what they say the breading on chicken nuggets is not a substitute for potatoes! I want her to have experiences I don't always provide at home, like the gym, water table, circle time, and crafts.
I called the Service Coordinator the next day to say we wouldn't be back. Then I signed up for Family Kindermusik through Swatcho's school.
What has Goldie been up to?
Her new thing is to pretend she's holding a camera and saying "jeeze" when I try to take a picture of her. She will also walk around with my camera in front of her while she repeats jeeze, jeeze, jeeze.
Hiding from therapists
and learning to blow her nose.
Then in October Goldie's Service Coordinator gives me a call to say that she has been invited to join a playgroup once a month. She thought I would have already heard since the agency my mom is working for is organizing the playgroup. So, I called Mom to get the scoop. She tells me that the playgroup is for Early Head Start families and the county asked them to allow 5 families from EI to participate. Not everyone wanted to collaborate with EI, but Mom told them they would do it as long as Goldie was one of the 5 kids. So here's how it went:
Week One: Circle time, free play with toys, craft, more free play in gym area, eat lunch, read a story
Week Two: Circle time, free play with toys
Week Three: Kids have free play while parents learn how to plan a meal, eat lunch, read a story
But, I was really looking forward to the one on one time with my Goldie Girl.
The Good:
~ Goldie played with some toys we don't have a lot of, like cars. She even imitated the boys crawling and pushing the cars, which is something we've been working on in PT.
~ It was great to see how much progress Goldie made from month to month
~ Lunch was free and they were very accommodating of our food allergy
~ This month Goldie had a blast running around the gym (I skipped the story and let her run loose, setting a bad example for all the other parents and children)
~ One week, she ate off of a paper plate and even tried to use utensils
~ I got to play with my baby and just my baby :)
The Not So Good:
~ Immature mothers. They were just annoying. Even when I was a young, new mom, I never was a baby bragger. People can see my kids, I don't need to point out that they are walking or talking. Those things are kind of obvious and don't define my self worth. I decided I would go in with blinder on, ignore them and just focus on being with Goldie.
~ Hank has to watch Swatcho because she isn't allowed to come. It is also in the morning and sometimes Swatcho ends up not doing school that day because we also have PT that afternoon.
~ I'm the only mom who went consistently and I think the only one whose child has a diagnosis. I think the other EI kids just have delays because I couldn't tell who they were. I wonder if they would have chosen Goldie if her grandma hadn't made them?
~ Its really just a government sponsored parenting class disguised as a play group. Reading a book, planning a meal...Don't. waste. my. time. Goldie's book collection rivals that of our public library and I don't care what they say the breading on chicken nuggets is not a substitute for potatoes! I want her to have experiences I don't always provide at home, like the gym, water table, circle time, and crafts.
I called the Service Coordinator the next day to say we wouldn't be back. Then I signed up for Family Kindermusik through Swatcho's school.
What has Goldie been up to?
Her new thing is to pretend she's holding a camera and saying "jeeze" when I try to take a picture of her. She will also walk around with my camera in front of her while she repeats jeeze, jeeze, jeeze.
Hiding from therapists
and learning to blow her nose.
Monday, February 9, 2009
More On My Mind
I hope I don't look like a "labeler" after that last post. It's really not my thing. I also don't mean to minimize Goldie's Down syndrome in any way either. Its just that...as their mom I worry about all of them. Mini Me's math struggles are on my mind just as much as Goldie's learning to drink from a cup. kwim?
This is Mini Me's first year in public school and up until now I've placed a lot of blame on myself. For the first time, I've been able to step back and see that I've done so much with her and maybe there is something else going on. I went to the school to ask for extra help for her and was told they already have an aide in the room. She helps all the kids. It wasn't until I suggested my child could have a learning disability did they offer to do anything. Do I think she needs an IEP? Probably not. But, unless I'm willing to speak the Special Needs language, she isn't going to get the help she needs. After talking to the principal for 2 hours (!) he tells me "parents don't usually ask for help for their child" She still hasn't mastered concepts that wre introduced at the end of 2nd grade and she's half way thru 4th! How far behind were they waiting for her to get? This is the only subject she needs support in, so it looks to them like she's just slacking. But I see the tears of frustration at home.
Before Goldie, I don't know if I would have sought help from the school. I would have been too proud. But now that I have a child whose diagnosis includes mental retardation, I don't care what people think.
Aaah. Its nice to get all of that out.
Now, why its really bothering me...
I keep thinking about inclusion. If they can't meet a "typical" child's needs, what will they have to offer Goldie? The Special Needs classroom is at a school on the other side of town and the Autism class is also at another building. I may be new to all of this, but I don't think inclusion means having a seperate class in your district. Then there was the comment to me by one of Mini Me's teacher suggesting that she just doesn't think my daughter is very smart. I wanted to puke. Where did she get that idea? Please tell me its because of the math anxiety and not because she has a sibling with DS. Will I fight for inclusion for Goldie so she can have this woman as a teacher?
I shouldn't even be thinking this far ahead. I have to trust that it will all work out. I'll have the wisdom when the time comes to decide what is best for Goldie.
Now, when I'm not bitching about my kid's school, I'm actually doing things with her. This weekend we made a 3-D version of the North Eastern states to help her learn the landmarks. Mini Me reports that the teacher was way impressed :)
This is Mini Me's first year in public school and up until now I've placed a lot of blame on myself. For the first time, I've been able to step back and see that I've done so much with her and maybe there is something else going on. I went to the school to ask for extra help for her and was told they already have an aide in the room. She helps all the kids. It wasn't until I suggested my child could have a learning disability did they offer to do anything. Do I think she needs an IEP? Probably not. But, unless I'm willing to speak the Special Needs language, she isn't going to get the help she needs. After talking to the principal for 2 hours (!) he tells me "parents don't usually ask for help for their child" She still hasn't mastered concepts that wre introduced at the end of 2nd grade and she's half way thru 4th! How far behind were they waiting for her to get? This is the only subject she needs support in, so it looks to them like she's just slacking. But I see the tears of frustration at home.
Before Goldie, I don't know if I would have sought help from the school. I would have been too proud. But now that I have a child whose diagnosis includes mental retardation, I don't care what people think.
Aaah. Its nice to get all of that out.
Now, why its really bothering me...
I keep thinking about inclusion. If they can't meet a "typical" child's needs, what will they have to offer Goldie? The Special Needs classroom is at a school on the other side of town and the Autism class is also at another building. I may be new to all of this, but I don't think inclusion means having a seperate class in your district. Then there was the comment to me by one of Mini Me's teacher suggesting that she just doesn't think my daughter is very smart. I wanted to puke. Where did she get that idea? Please tell me its because of the math anxiety and not because she has a sibling with DS. Will I fight for inclusion for Goldie so she can have this woman as a teacher?
I shouldn't even be thinking this far ahead. I have to trust that it will all work out. I'll have the wisdom when the time comes to decide what is best for Goldie.
Now, when I'm not bitching about my kid's school, I'm actually doing things with her. This weekend we made a 3-D version of the North Eastern states to help her learn the landmarks. Mini Me reports that the teacher was way impressed :)
Sunday, February 8, 2009
Special Needs Family
Technically speaking Goldie is the first and only member of my immediate family diagnosed with a syndrome that puts her in the special needs category. Since she was born, I've thought to myself MANY times that we all have special needs. Spending time with a variety of therapists who let me pick their brains has confirmed this.
Lets start with Hank and Swatcho. I'm convinced they both have ADHD. I'm sure its genetic because his mom and grandfather exhibit the same traits.(If you know anyone doing a study give us a call) Hank is physically unable to sit still. I have no idea how he made it through school. He says he paid people to do his homework so he could work after school. Then,there are the times he goes completely overboard. For example, he went to buy seeds for our garden last year. We only needed some pumpkin and green pepper seeds. He spent $80! WTH? I was only able to talk him into returning $40 worth. I only send him to the store as a last resort now.
Swatcho has been on the move as long as I can remember. Or not, because I don't actually remember her first steps. They were early and it was just the beginning of many trips to the ER. Broken leg 18 months, split chin 2yrs, stitches in big toe at 2 1/2yrs, and broken arm when she was 5. The arm was fun. She had to go to PT twice a week and we had therapists coming to the house for Goldie.I freak out now anytime she does anything remotely dangerous looking. Swatcho is also my sensory seeking child. She loves jumping, spinning, swinging, bike riding, etc...
So for a while I thought Mini Me was the "typical" one. But, alas, no such luck. I'll spare you all the details today, but let's just say she can't follow directions. I've tried everything. I realized it was a problem when I saw it impacting her school work. She knows the material, but can't remember the steps to complete a problem or answer a test question. One of her teachers has developed a low perception of her because of this. (thats a whole nuther post)
Hank came home today and said he thinks I should look into Executive Function Disorder. Yup, that's my girl. And she probably got it from me. But, when we were kids expectations were lower. I didn't have the amount of stuff to keep track of that she does, and I mean both toys and school work. I can also see why I have always kept our schedule so open. Too many things on the calendar and I get overwhelmed. There are weeks I think the whole therapist thing is going to put me over the edge. I'm thankful for them, but at the same time just want to be done with it already.
So there it is. Now, how do I organize ourhome lives so everyone's needs are met? Do I pursue a formal diasnosis for any of this or just implement strategies to help them be successful? I've started by boxing up some of Mini Me's toys and 2 bags of clothes. She had the idea that she could trade items so she doesn't have too much stuff out at once. I also do this with Goldie's toys to cut down on the mess.
Lets start with Hank and Swatcho. I'm convinced they both have ADHD. I'm sure its genetic because his mom and grandfather exhibit the same traits.(If you know anyone doing a study give us a call) Hank is physically unable to sit still. I have no idea how he made it through school. He says he paid people to do his homework so he could work after school. Then,there are the times he goes completely overboard. For example, he went to buy seeds for our garden last year. We only needed some pumpkin and green pepper seeds. He spent $80! WTH? I was only able to talk him into returning $40 worth. I only send him to the store as a last resort now.
Swatcho has been on the move as long as I can remember. Or not, because I don't actually remember her first steps. They were early and it was just the beginning of many trips to the ER. Broken leg 18 months, split chin 2yrs, stitches in big toe at 2 1/2yrs, and broken arm when she was 5. The arm was fun. She had to go to PT twice a week and we had therapists coming to the house for Goldie.I freak out now anytime she does anything remotely dangerous looking. Swatcho is also my sensory seeking child. She loves jumping, spinning, swinging, bike riding, etc...
So for a while I thought Mini Me was the "typical" one. But, alas, no such luck. I'll spare you all the details today, but let's just say she can't follow directions. I've tried everything. I realized it was a problem when I saw it impacting her school work. She knows the material, but can't remember the steps to complete a problem or answer a test question. One of her teachers has developed a low perception of her because of this. (thats a whole nuther post)
Hank came home today and said he thinks I should look into Executive Function Disorder. Yup, that's my girl. And she probably got it from me. But, when we were kids expectations were lower. I didn't have the amount of stuff to keep track of that she does, and I mean both toys and school work. I can also see why I have always kept our schedule so open. Too many things on the calendar and I get overwhelmed. There are weeks I think the whole therapist thing is going to put me over the edge. I'm thankful for them, but at the same time just want to be done with it already.
So there it is. Now, how do I organize our
Sunday, January 18, 2009
GO STEELERS!
We had a cozy night in, watching The Game. Mini Me and Swatcho are old enough to remember when the Steelers won the Super Bowl in '06, so they were all about the black and gold.
Hank picked up a Pittsburgh paper for me on his way home from work today. The first thing I noticed was that the article about the Steelers beat out the piece about the President Elect for space on the front page. I mean, really, he's already won.
The article (titled Great Expectations) discussed how Steeler's fans just expect their team to go to the Super Bowl every season. "In Pittsburgh, the Super Bowl is the standard. Nothing else will do." This got me thinking about Goldie and our expectations for her. I expect her to graduate from high school, pursue some sort of secondary education, get a job, fall in love, and live on her own. This is what I expect of all my children. If they choose to take a different path, that's ok. As long as it is their choice and not something they've been denied. Will I read this 20 years from now and think I was being naive. Maybe, but it won't be the first time.
Friday, January 16, 2009
Toddler Yogi
Tuesday we drove into Pittsburgh to meet with Sonia Sumar. Goldie and I were there for little over an hour, but it was an hour that will stay with me the rest of my life.
First, I have to tell you, that woman radiates love. pure love.
I brought Goldie early so she could get acclimated to her new surroundings. We were allowed to sit in the class and watch as Sonia worked with a little boy. We weren't told his diagnosis, but if I had to venture a guess I would say Cerebal Palsy. He looked to be about 5 and was one of the most articulate, intelligent children I have ever met. Sonia guided him through the yoga poses helping him relax his muscles with gentle touch, music and chanting. The two of them talked and chanted together the entire time. I was moved to tears at one point by the connection between the two of them. I tend to be a little emotional, but when I looked around I wasn't the only one with wet eyes in the room.
So, then it was Goldie's turn. This is where Goldie did her part to dispel the myth that people with Ds are happy all the time. She never had a complete crying break down, she just kept whimpering. Sonia respected this and guided me in doing some of the poses with Goldie. I learned she is capable of more than I thought. I also realize now that Yoga is about more than just poses, balance and strength. Its about being at peace with your body and who you are. Being happy in your skin. We could all use that. (I wonder if they have a class for mothers with multiple children)
Then there are the tangible benefits of yoga. Strength and balance. I really think learning the different chants would "count" as speech. I know Sonia used yoga as a form of vision therapy with her daughter. And how about just doing it for fun? I know the little boy I saw was having a good time.
The studio owner took pics for me, I'll post them after she sends them to me. Now, how to convince Hank that this is worth an hours drive plus the costs of the class?
Friday, January 9, 2009
Ohm
Yippeee! Goldie has a spot at a Yoga for the Special Child training. I'm stoked! I've been trying to find someone to work with her for over a year now. There is no one certified in our area and last years training had to be cancelled. Hopefully this go 'round will help us find someone close by to practice yoga with Goldie.
If you haven't hear of Yoga for the Special child there is a book and a website. I thought about becoming certified myself,but the certification course lasts 7 days and that just wasn't doable for our family right now. Nevermind my lack of yoga experience and cash to pay for the course.
Why yoga? Early intervention provides PT until Goldie is 3. After that services are provided through our school system. I've been looking into this and attended an informal Q&A on the transition process. Goldie will not receive individual PT, it will most likely be 15-30 minute sessions and they will be education based. We'd like Goldie to have strength, agility, and stamina. Doing yoga can help with all of these. Yoga is an activity she can enjoy for a lifetime, long after her PT eligibility has run out.
We have a family yoga dvd that I do with the girls. It is inspiring to watch her imitate the different asanas. I've also been looking at a dvd called Happy Me Yoga. But I am most impressed by Sonia Sumar and her story. Her book isn't just about yoga, it tells the story of her daughter, Roberta, who had Down Syndrome. We've started some of the activities she teaches, but are looking for some professional advice and guidance. I'll let you know how it goes!
If you haven't hear of Yoga for the Special child there is a book and a website. I thought about becoming certified myself,but the certification course lasts 7 days and that just wasn't doable for our family right now. Nevermind my lack of yoga experience and cash to pay for the course.
Why yoga? Early intervention provides PT until Goldie is 3. After that services are provided through our school system. I've been looking into this and attended an informal Q&A on the transition process. Goldie will not receive individual PT, it will most likely be 15-30 minute sessions and they will be education based. We'd like Goldie to have strength, agility, and stamina. Doing yoga can help with all of these. Yoga is an activity she can enjoy for a lifetime, long after her PT eligibility has run out.
We have a family yoga dvd that I do with the girls. It is inspiring to watch her imitate the different asanas. I've also been looking at a dvd called Happy Me Yoga. But I am most impressed by Sonia Sumar and her story. Her book isn't just about yoga, it tells the story of her daughter, Roberta, who had Down Syndrome. We've started some of the activities she teaches, but are looking for some professional advice and guidance. I'll let you know how it goes!
Wednesday, December 24, 2008
Christmas Eve Two Years Ago
I was 7 months pregnant with Goldie. Hank (cute nickname for hubby) and I decided to buck tradition and have Christmas Eve at our house. It would be the last day I spent with my Grandma. She died of a brain tumor a month later. But that night she was the smart, witty woman I had known all my life. She bought my girls some fun gifts and had a wonderful time watching her great-granddaughters enjoying them.
Goldie was born 4 weeks after my Grandma died. I did not see her before she died. I will always regret that. I should have followed my heart and not listened to the advice of others. However, I have no regrets about her life. I always made to time to stop and visit with her. My mom's family lives in Vermont, so she was the only Grandma I had growing up.
There is a sad irony in her passing before Goldie was born. Grandma had 3 boys. I have 3 girls. Her youngest sustained brain damage at birth. She was the mother of a special needs child before the term even existed. Before Early Intervention. She drove across Pennsylvania twice a year for his therapies. She told me about her experiences, but it never really hit home until Goldie was born. The one person who KNEW what I was going through was gone...
I cried a lot after Goldie's diagnosis. I could handle my daughter having Down Syndrome, but I couldn't fathom this journey without my Grandma. I've come a long way since those dark days. Here is a picture of her with my uncle and Swatcho (nickname for my middle dd).
Goldie was born 4 weeks after my Grandma died. I did not see her before she died. I will always regret that. I should have followed my heart and not listened to the advice of others. However, I have no regrets about her life. I always made to time to stop and visit with her. My mom's family lives in Vermont, so she was the only Grandma I had growing up.
There is a sad irony in her passing before Goldie was born. Grandma had 3 boys. I have 3 girls. Her youngest sustained brain damage at birth. She was the mother of a special needs child before the term even existed. Before Early Intervention. She drove across Pennsylvania twice a year for his therapies. She told me about her experiences, but it never really hit home until Goldie was born. The one person who KNEW what I was going through was gone...
I cried a lot after Goldie's diagnosis. I could handle my daughter having Down Syndrome, but I couldn't fathom this journey without my Grandma. I've come a long way since those dark days. Here is a picture of her with my uncle and Swatcho (nickname for my middle dd).
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