Goldie is seldom is sick, so it is easy for me to slip into a mindset that we have beat the "low immunity" aspect of Down syndrome. And maybe she has, but what has yet to be conquered is the darn dysphagia. So, on Mother's day, I sung my baby girl through IV sticks (3) and breathing treatments while my would be dinner of pasture raised filet mignon and NY strip, still wrapped in white butcher paper, lay in a pool of red juice.
While Goldie may catch less than half of the bugs I do, her low fluid intake makes fighting what she does come down with very difficult. This is compounded by the increased difficulty in swallowing when her sinuses are draining. A cold was making its way through our house and I had been worried that she wasn't coughing as much as her siblings and that mucous was, instead, settling in her chest. Mother's intuition, trust it. When I got her to the ER Sunday morning her oxygen levels were in the low 80's! A chest x-ray showed that Goldie had pneumonia. The rest of the day included IVs, oxygen, breathing treatments, antibiotics, and an ambulance ride. Listening to some folksy kid's music on Pandora, we rounded out the afternoon snuggled up in the hospital bed for a nap.
Hank still needs me at night, so I left Goldie in the capable arms of her Daddy. Then, I drove home, crying and feeling torn between my children. Repeat all of this for night two and add in a couple middle of the night phone calls with Goldie SCREAMING in the background. While all of this really stunk, my husband mentioned how much closer he feels to his little girl and I have found even more trust in him as her father, advocate, and protector.
She is home. She is tired. A trip to the post office yesterday, yielded a three hour nap! As for the rest of us, Hank has a double ear infection, the nine year old woke up with the stomach flu, and my hubby worked over fourteen hours yesterday. (I'm thankful for that because it means he has a job and we need the money to cover visits to the hospital). My promise to him when he left earlier: I will not crack up, today.
Showing posts with label down syndrome. Show all posts
Showing posts with label down syndrome. Show all posts
Friday, May 13, 2011
Sunday, April 10, 2011
Down Syndrome and ADHD: Our Diagnosis Story
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.
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.
Saturday, March 19, 2011
March 21st is World Down Syndrome Day
Just a reminder that Monday, March 21st is World Down Syndrome Day. March 21st was also my due date when I was pregnant with Goldie. I guess she didn't want to be defined by her diagnosis since she chose to make her entrance ten days sooner!
Here is a link to the events going on in the United States on 3/21.
http://www.worlddownsyndromeday.org/usa.htm
Here is a link to the events going on in the United States on 3/21.
http://www.worlddownsyndromeday.org/usa.htm
Friday, March 18, 2011
Goldie Knows the Alphabet
One thing I've learned is that Goldie is not a performer. She does not like to be tested on what she knows. A couple nights ago, Goldie got out her alphabet letters, so I grabbed the camcorder on the off chance that she would show off for me. I got lucky! Her are a couple videos of her identifying the letters of the alphabet. Part 2 includes some lowercase letters. You'll notice that instead of naming a couple of the vowels she tells me what sound they make.
Warning: the lighting is poor, her pajamas mismatched and the slip cover for our couch was in the laundry, but this is real life with 4 kids!
Warning: the lighting is poor, her pajamas mismatched and the slip cover for our couch was in the laundry, but this is real life with 4 kids!
Wednesday, March 9, 2011
Down Syndrome, ADHD and Sensory Processing Disorder
Until recently, Goldie didn't have a consistent OT. I've inquired to her current and old OT about trying Therapeutic Listening or a weighted vest to help with her lack of focus and attention. I was beginning to think they were blowing me off, but I politely persisted.
Goldie's OT provided me with a sensory inventory to complete. I knew she would have differences in a couple areas, but the inventory revealed her sensory needs are much greater than we had realized. Her OT and Speech Therapist admitted that they had never observed behaviors that would indicate Goldie has a sensory processing disorder. We had a long and productive conversation where I was able to give the Occupational Therapist insight into her behaviors at home. Together we came up with some ideas to help Goldie.
Initially, it will mean more work on my part. My thoughts are that it can't be worse than redirecting her every two minutes! We already do a lot of sensory activities with Goldie like swinging and sensory tubs (probably why her behaviors weren't more obvious). Overall, I am relieved to know that this isn't just a "DS thing" and there is more that we can do for her. So when I'm not brushing, compressing joints and trying to keep the headphones on, I'll be working on some posts about these new diagnosis. If any of these are things you are already dealing with, I would love to know your favorite resources, books, etc...
Sunday, February 20, 2011
Down Syndrome Research Plan
DownSyndrome Achieves has recently held two web conferences on the abandonment of DS research. Now there's a title that gets your attention! I wasn't able to fully view either one, but the bottom line is that DS research is grossly underfunded and their is a huge disparity between the amount of funding that goes to fund Down syndrome research versus other conditions. You can sign up for more information at http://dsachieves.org/ .
I also found the National Institutes of Health Research Plan on Down Syndrome. It is an eighty page downloadable pdf. I have it downloaded to iBooks on my iPad for reading while Goldie is at therapy. Remember, information is power!
I also found the National Institutes of Health Research Plan on Down Syndrome. It is an eighty page downloadable pdf. I have it downloaded to iBooks on my iPad for reading while Goldie is at therapy. Remember, information is power!
Tuesday, December 14, 2010
Homeschooler with Down Syndrome Signing "It's About the Cross"
This video is from a mom on my "local" homeschoolers with special needs email list. She is graciously letting me share her beautiful daughter Abigail signing "It's About the Cross" by The Ball Brothers.
Sometimes it is hard for me to imagine Goldie's future, both near and distant, because there are so many possibilities on a path that is always changing. Just when I was lamenting over Goldie's lack of fine motor skills in relation to her signing, this popped up on my screen. Watching Abigail reminded me to just be patient and that there are bigger things than how well my daughter can sign.
Sometimes it is hard for me to imagine Goldie's future, both near and distant, because there are so many possibilities on a path that is always changing. Just when I was lamenting over Goldie's lack of fine motor skills in relation to her signing, this popped up on my screen. Watching Abigail reminded me to just be patient and that there are bigger things than how well my daughter can sign.
Saturday, May 1, 2010
The Morning After - Receiving Goldie's Diagnosis
We just celebrated Goldie's 3rd birthday. She certainly got the better end of the birthday deal. While she was busy licking icing and tearing open gifts, I began climbing Mt. Transition. Instead of snow, its covered in paperwork. I still haven't reached the top.
Last year, I posted Goldie's birth story, but didn't go into any detail about receiving her diagnosis. This year, I feel better able to talk about it. I can look back and see the best and the worst of myself. I've forgiven myself for the worst and let go of the guilt.
During my pregnancy there was some concern that Goldie wasn't growing well. I measured small for my dates and had to have another ultrasound. This was the 2nd level II ultrasound for that pregnancy. They were able to get some great pictures of her heart that they didn't get the first time. The tech thought she was in the 50% and would be about 7+ pounds. Maybe if she had hung out another 2 weeks, but instead she was only 6lbs 1oz and 18 inches long. Her head circumference was so small it wasn't on the growth chart.
I had the quad screen and it came back negative for an elevated risk of having a baby with DS. At the time, I didn't know it only screens your risk level and is not a definitive test. After working with breastfeeding mothers, I wanted to be able to anticipate any feeding difficulties or know if my baby would need extra attention after birth. We thought this test would meet that need. Turns out it didn't.
During my pregnancy I had a feeling that something wasn't right. I couldn't shake it and just kept telling myself it was anxiety. I spent the better part of my pregnancy in funeral homes, so it made sense to me that I was just being over anxious.
If I close my eyes I can still feel the first time I my skin met Goldie's. She was purple and spongy. The only thought I could form was "Why does my daughter have saggy skin like an elephant?" Out loud I said, "What's wrong with her skin. Doesn't she have enough fat on her? Were my dates wrong? Is she too early?" Down syndrome was the furthest thing from my mind.
The nurses kept reassuring me, telling me her Apgars were 8 & 9.
"Really?" the doctor said.
I stopped asking, distracted by the automated blood pressure cuff cutting off the circulation in my arm. My hand would curl into a ball while everyone just stared. I took it off, threw it on the floor and explained they would have to take my blood pressure the old fashioned way. (I'm not a good patient.) It was about this time our friendly nurse, Ann, clammed up. She wouldn't even look make eye contact with me.
Then it was time for Goldie to meet her sisters. Well, one of them, the other one was having a rough time.
I spent the night hiding Goldie under my nightgown, keeping her warm and hoping I could convince her to nurse. Hospitals in my neck of the woods still don't have rooming in. The nurse's aid came twice to bring Goldie to the nursery. No dice lady. Then a nurse who tried to help Goldie latch on. She asked if Goldie looked like my other babies. Finally, she patted me on the back and left.
Morning came and, again, the wanted Goldie in the nursery. This time the pediatrician was there to do the newborn health assesments.
"Great, I want him to come to my room to see my baby," I said.
"We don't do that."
"Ok. Then come get me and I'll bring her to the nursery."
"But, there's other babies in there. No ones ever asked to do this before."
"Your choices are he can check my baby here or I can bring her there. I don't send my 8 yo to the doctor alone. I'm not sending my newborn."
I let Goldie go to the nursery, so I could get a shower before seeing the doctor. But first I called my husband. That was the first time I cried. I planned on going home that evening, so he wasn't rushing in that morning. The plan was to wait until afternoon, then we could all go home together.
So, he wasn't there when I went to the nursery. Goldie wasn't with the other babies. She wasn't swaddled anymore. I could see a little gold bear on her chest to take her temperature, her stomach was bulging out in the center where the muscles didn't come together.
"I'm glad you asked to be here. Is you husband with you?" the doctor asked.
"No."
"I wish he was. Your daughter is showing some of the physical characteristics of Down syndrome."
The words echoed in my head for a few seconds. Then I knew I had to listen very carefully to everything he said because my daughter's health depended on it. The only things I could remember about Down syndrome were that it was an extra chromosome and it was forever.
The doctor and I, mostly I, formed a plan to get some nourishment into Goldie. Then I had to call her daddy. I still feel like crap for giving him such life changing news over the phone.
The next day we got our wish and were able to go home as a family.
It would be a week before we got the results of the bloodwork. A loooong week of crying, swearing, laughing and loving.
Our family pediatrician saw Goldie that day. I requested him that day because he is so compassionate and has a quietness about him that I enjoy. The room was filled with our family of 5, the doctor and at least on medical student.
"The results of the genetic testing came back and they show a triplication of the 21st chromosome."
After converting that to English in my head, I lost it. I bawled. I cried like I have never cried in front of so many people. Including my own children. I wish they hadn't been there. I was still crying when our van pulled out onto the main road. Finally, my husband said something that made me stop.
"You know, she's still our little girl. She's just like any other kid. She's going to take her first steps, say her first words and learn to ride a bike."
"Oh, yeah."
Last year, I posted Goldie's birth story, but didn't go into any detail about receiving her diagnosis. This year, I feel better able to talk about it. I can look back and see the best and the worst of myself. I've forgiven myself for the worst and let go of the guilt.
During my pregnancy there was some concern that Goldie wasn't growing well. I measured small for my dates and had to have another ultrasound. This was the 2nd level II ultrasound for that pregnancy. They were able to get some great pictures of her heart that they didn't get the first time. The tech thought she was in the 50% and would be about 7+ pounds. Maybe if she had hung out another 2 weeks, but instead she was only 6lbs 1oz and 18 inches long. Her head circumference was so small it wasn't on the growth chart.
I had the quad screen and it came back negative for an elevated risk of having a baby with DS. At the time, I didn't know it only screens your risk level and is not a definitive test. After working with breastfeeding mothers, I wanted to be able to anticipate any feeding difficulties or know if my baby would need extra attention after birth. We thought this test would meet that need. Turns out it didn't.
During my pregnancy I had a feeling that something wasn't right. I couldn't shake it and just kept telling myself it was anxiety. I spent the better part of my pregnancy in funeral homes, so it made sense to me that I was just being over anxious.
If I close my eyes I can still feel the first time I my skin met Goldie's. She was purple and spongy. The only thought I could form was "Why does my daughter have saggy skin like an elephant?" Out loud I said, "What's wrong with her skin. Doesn't she have enough fat on her? Were my dates wrong? Is she too early?" Down syndrome was the furthest thing from my mind.
The nurses kept reassuring me, telling me her Apgars were 8 & 9.
"Really?" the doctor said.
I stopped asking, distracted by the automated blood pressure cuff cutting off the circulation in my arm. My hand would curl into a ball while everyone just stared. I took it off, threw it on the floor and explained they would have to take my blood pressure the old fashioned way. (I'm not a good patient.) It was about this time our friendly nurse, Ann, clammed up. She wouldn't even look make eye contact with me.
Then it was time for Goldie to meet her sisters. Well, one of them, the other one was having a rough time.
I spent the night hiding Goldie under my nightgown, keeping her warm and hoping I could convince her to nurse. Hospitals in my neck of the woods still don't have rooming in. The nurse's aid came twice to bring Goldie to the nursery. No dice lady. Then a nurse who tried to help Goldie latch on. She asked if Goldie looked like my other babies. Finally, she patted me on the back and left.
Morning came and, again, the wanted Goldie in the nursery. This time the pediatrician was there to do the newborn health assesments.
"Great, I want him to come to my room to see my baby," I said.
"We don't do that."
"Ok. Then come get me and I'll bring her to the nursery."
"But, there's other babies in there. No ones ever asked to do this before."
"Your choices are he can check my baby here or I can bring her there. I don't send my 8 yo to the doctor alone. I'm not sending my newborn."
I let Goldie go to the nursery, so I could get a shower before seeing the doctor. But first I called my husband. That was the first time I cried. I planned on going home that evening, so he wasn't rushing in that morning. The plan was to wait until afternoon, then we could all go home together.
So, he wasn't there when I went to the nursery. Goldie wasn't with the other babies. She wasn't swaddled anymore. I could see a little gold bear on her chest to take her temperature, her stomach was bulging out in the center where the muscles didn't come together.
"I'm glad you asked to be here. Is you husband with you?" the doctor asked.
"No."
"I wish he was. Your daughter is showing some of the physical characteristics of Down syndrome."
The words echoed in my head for a few seconds. Then I knew I had to listen very carefully to everything he said because my daughter's health depended on it. The only things I could remember about Down syndrome were that it was an extra chromosome and it was forever.
The doctor and I, mostly I, formed a plan to get some nourishment into Goldie. Then I had to call her daddy. I still feel like crap for giving him such life changing news over the phone.
The next day we got our wish and were able to go home as a family.
It would be a week before we got the results of the bloodwork. A loooong week of crying, swearing, laughing and loving.
Our family pediatrician saw Goldie that day. I requested him that day because he is so compassionate and has a quietness about him that I enjoy. The room was filled with our family of 5, the doctor and at least on medical student.
"The results of the genetic testing came back and they show a triplication of the 21st chromosome."
After converting that to English in my head, I lost it. I bawled. I cried like I have never cried in front of so many people. Including my own children. I wish they hadn't been there. I was still crying when our van pulled out onto the main road. Finally, my husband said something that made me stop.
"You know, she's still our little girl. She's just like any other kid. She's going to take her first steps, say her first words and learn to ride a bike."
"Oh, yeah."
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.
Monday, December 14, 2009
Nasonex
10 days ago I posted about Goldie still not being able to breathe, here. I just wanted to update that things are 100% better. The antibiotics weren't working so her ped had us stop them. Then she asked if we wanted to try Nasonex or Singulair. Nasonex is a nasal spray to reduce inflamation and Singulair would be an oral medication that also reduces inflamation. I opted for the nasal spray because I thought it would be best to treat just the problem area. Wow, what a difference it has made. After less than a week, she breathes quietly through her nose with no congestion. I don't know how long we'll have to keep using it, but for now I'm not messing with a good thing. Its only one spray per day and you don't build up a tolerance to it like OTC nasal sprays.
On the baby front, I'm 39 weeks and really uncomfortable. Apparently, most of my weight gain is just that, mine, the baby isn't expected to top 7 pounds. After doing some research, I found that my mom and my brother were both around 6 1/2 pounds. That put my mind at ease. As the midwife put it, "Your growing a baby that is the right size for you." Goldie was so much smaller than my first two and I always attributed it to the DS, maybe I need to rethink that. I should go to bed now, but even that is painful and I don't really sleep all that much anyway. Just mother nature's way of getting me ready for the big day!
On the baby front, I'm 39 weeks and really uncomfortable. Apparently, most of my weight gain is just that, mine, the baby isn't expected to top 7 pounds. After doing some research, I found that my mom and my brother were both around 6 1/2 pounds. That put my mind at ease. As the midwife put it, "Your growing a baby that is the right size for you." Goldie was so much smaller than my first two and I always attributed it to the DS, maybe I need to rethink that. I should go to bed now, but even that is painful and I don't really sleep all that much anyway. Just mother nature's way of getting me ready for the big day!
Monday, November 30, 2009
The Picture
At the end of this post,I mentioned a picture that was hanging in the entrance hall of my midwife's office. Well, I found it online here, so I can share it with all of you. You'll have to select the 4th picture at the top and then the 3rd one on the right. This was the first time I read the text that goes with it. I'm so busy trying to get 3 kids in and out with me that I never stop.
Monday, November 23, 2009
36 Weeks!
I had my 36 week midwife appointment today. It felt so wierd to go back, since I was just there 5 days ago. But, weekly visits it is from here on out!
I measured 35 cm. Which is just great! He doesn't seem to be a very big baby and they estimate he'll be about 6 1/2 pounds, no more than 7. I can't wait to see if they're right. I know the u/s I had with Goldie wasn't very accurate. I was offered an u/s today, but declined. My neighbor is going through a complicated pregnancy right now, with weekly ultrasounds and visits to specialists. I see the emotional roller coaster this has put them on and I want no part of it. I don't need any help finding things to worry about.
The midwife also mentioned that there was a RSV outbreak at the hospital they use. (I'm planning on delivering at a birth center.) Healthy newborns from the nursery were testing infected and they had to stop admitting mothers to labor and delivery. I relayed this story to my husband who still thinks a hospital birth may be safer. It just shows that anything can happen regardless of how well thought out and researched our choices are.
I've also been thinking a lot lately about trusting my instincts and intuition with this pregnancy. I'm finding it harder since Goldie was born. My question is this: Did you "know" (in your gut, not medically speaking) your baby was going to have DS or have a feeling that something wasn't right when you were pregnant?
I measured 35 cm. Which is just great! He doesn't seem to be a very big baby and they estimate he'll be about 6 1/2 pounds, no more than 7. I can't wait to see if they're right. I know the u/s I had with Goldie wasn't very accurate. I was offered an u/s today, but declined. My neighbor is going through a complicated pregnancy right now, with weekly ultrasounds and visits to specialists. I see the emotional roller coaster this has put them on and I want no part of it. I don't need any help finding things to worry about.
The midwife also mentioned that there was a RSV outbreak at the hospital they use. (I'm planning on delivering at a birth center.) Healthy newborns from the nursery were testing infected and they had to stop admitting mothers to labor and delivery. I relayed this story to my husband who still thinks a hospital birth may be safer. It just shows that anything can happen regardless of how well thought out and researched our choices are.
I've also been thinking a lot lately about trusting my instincts and intuition with this pregnancy. I'm finding it harder since Goldie was born. My question is this: Did you "know" (in your gut, not medically speaking) your baby was going to have DS or have a feeling that something wasn't right when you were pregnant?
Tuesday, October 27, 2009
Baby Update Week 32 and Post Partum Depression
I know some of you have been wanting a pregnancy update, so here it is...
I'm happy to say I'm feeling really good and everything has been wonderfully uneventful thus far. I'm measuring exactly where I should. (This was an issue when I was carrying Goldie because she was so small.) I think chasing a 2 year old around is an excellent way to stay in shape and prepare your body for childbirth! The midwife did let me know I should be drinking more water. Duh. I spend all day obsessing over how many ounces Goldie has had to drink that I completely forget about myself.
We also discussed the emotional side of pregnancy. Specifically when you already have a child with a diagnosis. I lost something when Goldie was born. My peace of mind. Before, I assumed I would have healthy pregnancies and typical babies. Now, I am very aware of the myriad of things that could happen to change our lives. I no longer feel that "it won't happen to me" because it has. As God would have it, the midwife I saw that day also has a child with special needs. It was so nice to talk to someone who gets all these feelings. She also brought up some things I hadn't thought of. For instance, did you know some mothers in my situation have a hard time pushing. They feel as long as they are still pregnant the baby is perfect and are afraid of that changing once the baby is born.
I also asked about Post Partum Depression. I dealt with this after Goldie was born and would like to be more proactive this time. Again, she understood and suggested speaking to a psychologist before the birth and taking a childbirth class that deals with overcoming traumatic birth experiences. Not that either of think her birth was traumatic, but it certainly left me with some guilt and hurt feelings.
I don't think I've ever blogged about the PPD I had after Goldie was born. I denied it for a long time because I thought it would mean I wasn't happy with her. I also wasn't really depressed. I didn't sit around in my pajamas all the time. I did everything I was supposed to do in a day. But, I was very angry. All the time. I would yell at my kids over little things and then feel guilty, but do it all again the next day. I also had nightmares and irrational fears. There was a recurring dream that Goldie was missing and I couldn't find her. I tried some natural remedies, like taking Omega-3s. But they didn't help and some actually made the dreams worse. Finally, when Goldie was 8 months old I went to my OB and got a prescription for Zoloft. It helped tremendously and I stayed on it for 9 months and then slowly stopped weaned myself off of it.
Why am I worried that this will happen again? I had the dream again. Only it wasn't Goldie that was missing, but our new baby. It was reassuring to wake up and know that I'm still pregnant. I'm also nervous about having a typical baby. I worry that it will take me back to when Goldie was a baby and I will mourn, again, for the experiences we didn't have. Or even that I will miss the things about her that he doesn't have. I loved that chubby neck and the hugs that melt into you like butter.
I hope that all this worrying is for nothing. These thoughts may all disappear once he is here and in my arms. I imagine we will be so happy with him that there won't be any looking back.
Saturday, October 10, 2009
Transition - Getting Ready
Next week is the first meeting in the transition process for Goldie. She won't be 3 until March and right in the middle of now and then I'll be having a baby. I've been dreading this since our first IFSP meeting. Honestly, I would like to say "no thank-you" and go back to having a "normal" life where I don't have to deal with THE SYSTEM. I think part of the reason I find this so daunting is that none of my kids went to preschool. I was the lone mom in my circle of friends who didn't believe in preschool. I do believe most parents provide all the enrichment any preschooler needs. They have many years of school ahead of them, why let them get burnt out before kindergarten? Childhood is short and I want my girls to have as much of it as possible, TOGETHER. The day will come when they don't share a roof over their heads, let alone a bedroom and these years will be what bonds them for life.
I was all set to send Goldie off to school when she turned 3, sort of. Then, sometime in the last year I started thinking that everything I believed was best for my other children could still be what's best for Goldie. Does she deserve less time chasing chickens and making blanket forts because she has a disability? Is there anything preschool will teach her that I or her siblings can't?
Of course, she does have different needs than her sisters. Can I meet them? Yes. But, I know when I need help. Hank and I talked and (as of now, plans may change as we get more information) we will not be sending Goldie to pre-k in March. Our plan is to send her to a typical pre-k, twice a week, in the fall, following her 3rd birthday. I don't think its wise to send her off to school less than 12 weeks after getting a new sibling. I know from experience that can be a rough time for the youngest.
This plan means we have to decide how Goldie will get her speech and OT services. I thought I had that figured out, until the Service Coordinator was telling me the laws changed back in January. I've been told we can bring her to the school, just for her services. I've also been told the state doesn't allow any one-on-one therapies. Her current OT and ST both feel that all of her needs will not be met by the school district and that she would need private therapy in addition to what the school provides. Fortunately, a pediatric therapy center opened up a mile and a half from our house. Still, my head is swimming with the different choices and if they are even choices we will have. I hope to have some answers next week and a clearer picture of what will happen when she turns 3.
On another note, Goldie met an OT goal this week. The one were she learns to remove her pants. She even went above and beyond and took off her diaper. Sorry, no picture! But, here's another cute one I had to share.
I should add that is a water baby in the sling. It is much heavier than our other baby dolls and is a sneaky way to help Goldie with her arm strength!
I was all set to send Goldie off to school when she turned 3, sort of. Then, sometime in the last year I started thinking that everything I believed was best for my other children could still be what's best for Goldie. Does she deserve less time chasing chickens and making blanket forts because she has a disability? Is there anything preschool will teach her that I or her siblings can't?
Of course, she does have different needs than her sisters. Can I meet them? Yes. But, I know when I need help. Hank and I talked and (as of now, plans may change as we get more information) we will not be sending Goldie to pre-k in March. Our plan is to send her to a typical pre-k, twice a week, in the fall, following her 3rd birthday. I don't think its wise to send her off to school less than 12 weeks after getting a new sibling. I know from experience that can be a rough time for the youngest.
This plan means we have to decide how Goldie will get her speech and OT services. I thought I had that figured out, until the Service Coordinator was telling me the laws changed back in January. I've been told we can bring her to the school, just for her services. I've also been told the state doesn't allow any one-on-one therapies. Her current OT and ST both feel that all of her needs will not be met by the school district and that she would need private therapy in addition to what the school provides. Fortunately, a pediatric therapy center opened up a mile and a half from our house. Still, my head is swimming with the different choices and if they are even choices we will have. I hope to have some answers next week and a clearer picture of what will happen when she turns 3.
On another note, Goldie met an OT goal this week. The one were she learns to remove her pants. She even went above and beyond and took off her diaper. Sorry, no picture! But, here's another cute one I had to share.
I should add that is a water baby in the sling. It is much heavier than our other baby dolls and is a sneaky way to help Goldie with her arm strength!
Friday, October 9, 2009
My Favorite Thing
Down Syndrome New Mama posed the question "what is your favorite thing about DS?"
It would have to be the way I feel every time Goldie smiles at me or laughs along with me. I get a feeling when she smiles at me that I don't get with my other kids (shh, don't tell). Her pure happiness and unconditional love are contagious. She can change my mood in an instant. Its like looking up and seeing a rainbow. You never get tired of it. Even if you've seen one, you want to see another.
It would have to be the way I feel every time Goldie smiles at me or laughs along with me. I get a feeling when she smiles at me that I don't get with my other kids (shh, don't tell). Her pure happiness and unconditional love are contagious. She can change my mood in an instant. Its like looking up and seeing a rainbow. You never get tired of it. Even if you've seen one, you want to see another.
Thursday, October 8, 2009
Electric fences
For 3, maybe 4, months a year our property borders an electric fence. It is about 8 feet from our chickens and the garden. It is so beautiful to get up and have coffee while watching a newborn calf nurse from his mother. I love it here. My children are growing up in the same house I did and playing in the same yard I did. Hank grew up on a small farm, so this property was a good fit for him.
I slowly feel we are becoming our own small farm. There is always something that needs done. Like yesterday. I took Goldie outside to swing. While we were out I noticed the walnuts on the ground needed to be picked up so Hank could mow the grass. I walked over to get a wheelbarrow to put them in. While getting the wheelbarrow I see that the chickens need water. I take the bucket back to the house. While I'm dunking it in the rain barrel I turn to check on Goldie. She is headed toward the cow pasture. Despite my running and screaming, she beat me to it. By a mile. I felt like I was in a race against the electric current. This time we won. The fence wasn't working. (FYI, they don't deliver a continuous shock, it travels around the fence, which is very long. I've been shocked and it hurts, but it isn't dangerous, kwim?) The neighbor called later to see if everything was ok. She was outside and heard me yelling. I told her Goldie was fine, but I was very sore and would be spending the afternoon on the couch. I'm 29 weeks pg, not a good time to start sprinting.
I really believe inclusion begins at home, but I struggle with including Goldie and keepingmy sanity her safe. She usually stands and watches the chickens while I get the water. Hank taught her to pull grass and feed it to them. This is very cute, but she's gotten her fingers pecked already.
I slowly feel we are becoming our own small farm. There is always something that needs done. Like yesterday. I took Goldie outside to swing. While we were out I noticed the walnuts on the ground needed to be picked up so Hank could mow the grass. I walked over to get a wheelbarrow to put them in. While getting the wheelbarrow I see that the chickens need water. I take the bucket back to the house. While I'm dunking it in the rain barrel I turn to check on Goldie. She is headed toward the cow pasture. Despite my running and screaming, she beat me to it. By a mile. I felt like I was in a race against the electric current. This time we won. The fence wasn't working. (FYI, they don't deliver a continuous shock, it travels around the fence, which is very long. I've been shocked and it hurts, but it isn't dangerous, kwim?) The neighbor called later to see if everything was ok. She was outside and heard me yelling. I told her Goldie was fine, but I was very sore and would be spending the afternoon on the couch. I'm 29 weeks pg, not a good time to start sprinting.
I really believe inclusion begins at home, but I struggle with including Goldie and keeping
Sunday, September 27, 2009
Measuring Growth
I take Goldie for her well checks, they measure her and plot it on her chart. I write the number down and plot it on my charts for her at home. Sounds simple enough. Apparently not.
Last September (18 mos) Goldie measured 32" (81cm). In March at her 2 yr appt she still measured 32". The ped noted that they must have measured wrong at the 18 mo appt because she jumped up on the curve and was now back where she should be. As spring turned to summer and we had a lot of appointments lined up for Goldie there were many more measurements taken. Always 32". Just for kicks, I measured her myself one day. Lying down, like at her 18 mo appt. I got 34 1/2" (87.5cm).
Mel commented on my last post that maybe Goldie was having a growth spurt. When she felt heavier the other morning and her pj's looked shorter I measured her again. I laid her on the hard floor with her head against the wall. I got 35 1/2" or 90cm. I waited a couple days and measured once more. Still 35 1/2".
We were having trouble getting Goldie's last blood work results from the lab, so I had a call in the ped. I asked about measuring growth when I spoke with her. I thought maybe Goldie's low tone made her shorter when she stood up. She explained that your joints compress when you stand up and they have had children "shrink" when they began measuring them standing up. Glad I asked! I gave her the measurement I had for Goldie and she wrote it in her chart.
Speaking of charts, what do you use? We use the DS charts and the WHO charts. WHO charts are based on the growth patterns of breastfed children. The reasoning for not just using the DS charts are that if they are based on children who may have less than optimal growth for any variety of reasons then they may not show a slow in growth as obviously as the WHO charts. If we want Goldie to grow as typically as possible then we need to compare her growth to a larger population of children. I forget where I first read about this theory, but it made sense to me.
Last September (18 mos) Goldie measured 32" (81cm). In March at her 2 yr appt she still measured 32". The ped noted that they must have measured wrong at the 18 mo appt because she jumped up on the curve and was now back where she should be. As spring turned to summer and we had a lot of appointments lined up for Goldie there were many more measurements taken. Always 32". Just for kicks, I measured her myself one day. Lying down, like at her 18 mo appt. I got 34 1/2" (87.5cm).
Mel commented on my last post that maybe Goldie was having a growth spurt. When she felt heavier the other morning and her pj's looked shorter I measured her again. I laid her on the hard floor with her head against the wall. I got 35 1/2" or 90cm. I waited a couple days and measured once more. Still 35 1/2".
We were having trouble getting Goldie's last blood work results from the lab, so I had a call in the ped. I asked about measuring growth when I spoke with her. I thought maybe Goldie's low tone made her shorter when she stood up. She explained that your joints compress when you stand up and they have had children "shrink" when they began measuring them standing up. Glad I asked! I gave her the measurement I had for Goldie and she wrote it in her chart.
Speaking of charts, what do you use? We use the DS charts and the WHO charts. WHO charts are based on the growth patterns of breastfed children. The reasoning for not just using the DS charts are that if they are based on children who may have less than optimal growth for any variety of reasons then they may not show a slow in growth as obviously as the WHO charts. If we want Goldie to grow as typically as possible then we need to compare her growth to a larger population of children. I forget where I first read about this theory, but it made sense to me.
Friday, July 31, 2009
Updates and an Ultrasound
We had a week of good news!
First, Goldie saw the pediatric opthalmologist and it looks like she isn't going to need surgery anytime soon. Her nystagmus continues to improve. In Dr. H's words "sometimes nature does as good a job as I can do with surgery." There is another procedure that can be done to center her null point, but hers continues to move so that will also have to wait.
Then we talked to neurosurgeon. Goldie's numbers from her c-spine xray were in the normal range and she doesn't need to have any restrictions. She said Goldie can be just as active as any other kid her age. The Dr. does want to follow up with us yearly for the next two years to see if things move and get worse or better. Now, we have the all clear to get her tonsils and adenoids out.
Last, but not least, I went for my ultrasound. The baby is measuring a week smaller than my dates, so I may get another week to prepare! The dates could be off because of breastfeeding and not having regular cycles. So, here's were things got weird. The very nice lady doing my ultrasound went to talk to the Dr. about the measurements.(FYI - This is not my Dr. I wasn't expecting to see a Dr. I am being cared for by a group of midwives.) She comes back in the room and explains to us that because we have a child with Down syndrome the doctor wants us to speak to a Genetic Counselor. Right now. He will not see us unless we do. She told him we were declining genetic testing. He still wanted us to talk to someone from genetics.
I feel like I should explain our decision. When I was pg with Goldie I had the quad screen, a level II ultrasound at 17 weeks and another u/s at 36 weeks. I wanted to be prepared if my baby was going to have feeding difficulties or require a hospital stay. We also had other children that would have to be taken care of if I was at the hospital with the baby longer than expected. However, God had other plans. All of the screenings came back as normal and we were totally suprised when told that Goldie may have DS. So, I have very little faith in their ability to diagnose prenatally. I have been told by a genetic counselor that we are among the 5% who have the screenings where nothing shows up. Hank and I have also come to terms with the fact that any time you choose to become a parent you are accepting the risks that come with it. Just as there is a chance that a baby can be born with health complications, there is also the possibility that our older children can develop health problems or get hurt in an accident. You can't "test" your way out of life's rough spots.
Back in the room, Goldie is climbing the wallsand my 7 year old is writhing in her chair. It had been a long morning consisting of wrong directions (twice) and the long ultrasound with a stubborn baby curled in a ball. We were done. They got pictures of everything they needed and I'm sure if something doesn't look "right" we'll get a phone call, so we left.
But, not before we found out we're having a BOY!
First, Goldie saw the pediatric opthalmologist and it looks like she isn't going to need surgery anytime soon. Her nystagmus continues to improve. In Dr. H's words "sometimes nature does as good a job as I can do with surgery." There is another procedure that can be done to center her null point, but hers continues to move so that will also have to wait.
Then we talked to neurosurgeon. Goldie's numbers from her c-spine xray were in the normal range and she doesn't need to have any restrictions. She said Goldie can be just as active as any other kid her age. The Dr. does want to follow up with us yearly for the next two years to see if things move and get worse or better. Now, we have the all clear to get her tonsils and adenoids out.
Last, but not least, I went for my ultrasound. The baby is measuring a week smaller than my dates, so I may get another week to prepare! The dates could be off because of breastfeeding and not having regular cycles. So, here's were things got weird. The very nice lady doing my ultrasound went to talk to the Dr. about the measurements.(FYI - This is not my Dr. I wasn't expecting to see a Dr. I am being cared for by a group of midwives.) She comes back in the room and explains to us that because we have a child with Down syndrome the doctor wants us to speak to a Genetic Counselor. Right now. He will not see us unless we do. She told him we were declining genetic testing. He still wanted us to talk to someone from genetics.
I feel like I should explain our decision. When I was pg with Goldie I had the quad screen, a level II ultrasound at 17 weeks and another u/s at 36 weeks. I wanted to be prepared if my baby was going to have feeding difficulties or require a hospital stay. We also had other children that would have to be taken care of if I was at the hospital with the baby longer than expected. However, God had other plans. All of the screenings came back as normal and we were totally suprised when told that Goldie may have DS. So, I have very little faith in their ability to diagnose prenatally. I have been told by a genetic counselor that we are among the 5% who have the screenings where nothing shows up. Hank and I have also come to terms with the fact that any time you choose to become a parent you are accepting the risks that come with it. Just as there is a chance that a baby can be born with health complications, there is also the possibility that our older children can develop health problems or get hurt in an accident. You can't "test" your way out of life's rough spots.
Back in the room, Goldie is climbing the wallsand my 7 year old is writhing in her chair. It had been a long morning consisting of wrong directions (twice) and the long ultrasound with a stubborn baby curled in a ball. We were done. They got pictures of everything they needed and I'm sure if something doesn't look "right" we'll get a phone call, so we left.
But, not before we found out we're having a BOY!
Sunday, July 5, 2009
Sleep Study
Finally, everyone is in bed, so I'll let you know how the good ole sleep study went. First, the tech was very pregnant and did not want to be there. I can sympathize, having been 9 months pg three times in my life, so I cut her some slack. But, I don't think she would have had much personality anyway. More on that later.
Before we start, she insists Goldie be strapped into a papoose board to attach the wires to her head. I was initially resistant, but I knew it would go soooo much quicker if I didn't have to restrain her and this way I could actually comfort her. It took 30 minutes to get that part done. She cried some, but was consolable and liked it when I sang to her. And why didn't someone tell me the use a mini air compressor to attach those things? I think that scared her the most. Another 15 minutes to put on the belts and hook up her legs. After that she was exhausted and only nursed a few minutes before falling asleep.
During the night she woke up at least every hour. I was able to get her back to sleep rather quickly and only had to nurse her one more time. We were done at 5:30 and on the road by 6. She was so excited to get in the van and didn't even fall asleep on the way home. I stopped at McD's and got her a hashbrown. She has her own sign for McDonald's. Sad, I know.
Back to the tech. I like to get along with people who are messing with my kid, so I tried to make small talk and stay very happy and cheerful. She explained, more than once, that if I couldn't handle Goldie being strapped down we could quit and go home. I told her that being a mother of 3 had seasoned me. I've held kids down, for dentists, bloodwork, stitches, x-rays, casts, etc... so this was really going to be ok. As long as Goldie was able to calm down and not crying till she puked we'd be fine. Then she asks "So do your other kids have Down syndrome, too?"
Go ahead, read that again if you need to. Hank and I have been asked a lot of things, but this one takes the cake. I laughed and told her no. Seriously, how can you work for a children's hospital and not know this isn't hereditary.(I know you can carry a translocation, but those are rare and not all translocations are hereditary.) She acted like they had seen a lot of kids with DS come in for sleep studies. I hope she's not a nurse. I'm wondering what kind of schooling she had to qualify her for this job. Did it include a biology class? When I got home Hank told me I should have said "I caught it from my husband and now the kids have it. We don't know how to get rid of it." LMAO.
I was also told repeatedly that "all kids with DS sit up in their sleep." Umm, don't they only see the kids that don't sleep well. If Goldie wasn't sitting up and waking frequently, I know we wouldn't have been there.
On a positive note, I didn't get any crap about breastfeeding or laying with Goldie to feed her when she woke up. They get a thumbs up for that!
We'll know the results in two weeks. I wasn't asking the tech what she thought.
Saturday, June 20, 2009
Not the end of the world
I try to steer away from writing about certain family members and their backwards way of thinking, but I'm guessing I'm not the only one who runs into these kind of people. I just don't get why some people think its better to be dead than have a disability.
We went to a graduation party today for a young man I used to babysit about 10 years ago. Hank and his family were neighbors. I would watch their three kids while the parents went bowling until I had my first baby. Then, the mom watched my dd part time when I went back to work for a few months. Its hard to believe two of those three have finished high school.
Anyway, the topic of John & Kate +8 came up which led to the topic of a certain mom who had 8 babies when she already had 6 children at home. Then of course someone has to mention that they think "two of her kids have autism and one is half blind."
To which I say "Goldie is half blind, I'm sure he'll be fine."
At this point Hank has some wierd expression on his face I don't remember seeing before. The family member goes on to tell me "well you can't tell" No, I guess if you've been living with your head in the sand you wouldn't notice. Hello! She was at the zoo where my kid couldn't see the animals last month. She is the same person who sat across from Goldie last year calling her name repeatedly while Goldie looked around trying to find who was talking to her. How clueless am I supposed to believe she is?
So she changes the subject to a cousin that uses his peripheral vision and how strange she thinks that is. Hank finally told her to be quiet because she was being rude. BTW, he left early and finished the party at home.
This whole thing just pisses me off. Goldie is 2 and I feel like she has learned NOTHING by having her in our lives. Everytime she talks about someone with a disablity it is with such pity in her voice. She shakes her head, sighs, and looks at the floor. Of course, for her to learn something from Goldie she would have to admit that she has a disability. I just want her to see that you can have both a disablity and a happy, fulfilled life.
We went to a graduation party today for a young man I used to babysit about 10 years ago. Hank and his family were neighbors. I would watch their three kids while the parents went bowling until I had my first baby. Then, the mom watched my dd part time when I went back to work for a few months. Its hard to believe two of those three have finished high school.
Anyway, the topic of John & Kate +8 came up which led to the topic of a certain mom who had 8 babies when she already had 6 children at home. Then of course someone has to mention that they think "two of her kids have autism and one is half blind."
To which I say "Goldie is half blind, I'm sure he'll be fine."
At this point Hank has some wierd expression on his face I don't remember seeing before. The family member goes on to tell me "well you can't tell" No, I guess if you've been living with your head in the sand you wouldn't notice. Hello! She was at the zoo where my kid couldn't see the animals last month. She is the same person who sat across from Goldie last year calling her name repeatedly while Goldie looked around trying to find who was talking to her. How clueless am I supposed to believe she is?
So she changes the subject to a cousin that uses his peripheral vision and how strange she thinks that is. Hank finally told her to be quiet because she was being rude. BTW, he left early and finished the party at home.
This whole thing just pisses me off. Goldie is 2 and I feel like she has learned NOTHING by having her in our lives. Everytime she talks about someone with a disablity it is with such pity in her voice. She shakes her head, sighs, and looks at the floor. Of course, for her to learn something from Goldie she would have to admit that she has a disability. I just want her to see that you can have both a disablity and a happy, fulfilled life.
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