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 mother's intuition. Show all posts
Showing posts with label mother's intuition. Show all posts
Friday, May 13, 2011
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."
Thursday, March 12, 2009
Nystagmus
Thank you to everyone who read Goldie's long birth story. I'll try not to leave you hanging much longer. But, I just had to post about today!
Goldie was diagnosed with Nystagmus when she was about 4 months old. Basically, her eyes jerk back and forth and she is unable to focus on anything. Even though the DS "caused" her nystagmus, I feel like the nystagmus has affected Goldie's development more than the DS. It has improved tremendously since she was an infant, but it is always there.
I took her to an ophthalmologist at 4mo, 6mo, and 1 year. She has also had Vision Therapy for the last 14 months. At Goldie's 1 year appointment I had some specific questions about her vision that they were unable or unwilling to answer. I felt that her diagnosis of nystagmus was being trivialized. At one point, the doctor told me "most babies are legally blind anyway". Um, no, not at 12 months. I was told there was no treatment.
I'm basically skeptical of doctors anyway, so I decided to get a second opinion. After months of research and talking to Goldie's VT I made an appoint with a doctor at our children's hospital. He specializes in nystagmus. I don't know why we weren't referred to him sooner, but that's ok.
We saw him today. He gave us what every parent wants, hope. I learned more about Goldie's vision from this doctor in 5 minutes than I have in the last 2 years. He picked up on ways she was compensating that no one had noticed. He explained how treatment will help Goldie and that she is at the perfect age. Seeing him sooner wouldn't have changed anything because children respond better to treatment after they are walking. He said most children with nystagmus are left untreated even the surgery is very similar to the ones used to correct strabismus. Some of the things I learned made me sad. Her vision has probably been much worse than we were led to believe. I've known there was a lot she couldn't see, but I wanted to believe that it wasn't as bad as I thought.
We left with a large book written by one of his adult patients. I started reading it on our way home and already have a list of questions started for when we see him again in 3 months. The woman who wrote the book is from California. She was unable to find anyone to help her, so she flew across the country to meet this dr. I can't tell you how blessed we feel to have him in our "backyard".
Goldie was diagnosed with Nystagmus when she was about 4 months old. Basically, her eyes jerk back and forth and she is unable to focus on anything. Even though the DS "caused" her nystagmus, I feel like the nystagmus has affected Goldie's development more than the DS. It has improved tremendously since she was an infant, but it is always there.
I took her to an ophthalmologist at 4mo, 6mo, and 1 year. She has also had Vision Therapy for the last 14 months. At Goldie's 1 year appointment I had some specific questions about her vision that they were unable or unwilling to answer. I felt that her diagnosis of nystagmus was being trivialized. At one point, the doctor told me "most babies are legally blind anyway". Um, no, not at 12 months. I was told there was no treatment.
I'm basically skeptical of doctors anyway, so I decided to get a second opinion. After months of research and talking to Goldie's VT I made an appoint with a doctor at our children's hospital. He specializes in nystagmus. I don't know why we weren't referred to him sooner, but that's ok.
We saw him today. He gave us what every parent wants, hope. I learned more about Goldie's vision from this doctor in 5 minutes than I have in the last 2 years. He picked up on ways she was compensating that no one had noticed. He explained how treatment will help Goldie and that she is at the perfect age. Seeing him sooner wouldn't have changed anything because children respond better to treatment after they are walking. He said most children with nystagmus are left untreated even the surgery is very similar to the ones used to correct strabismus. Some of the things I learned made me sad. Her vision has probably been much worse than we were led to believe. I've known there was a lot she couldn't see, but I wanted to believe that it wasn't as bad as I thought.
We left with a large book written by one of his adult patients. I started reading it on our way home and already have a list of questions started for when we see him again in 3 months. The woman who wrote the book is from California. She was unable to find anyone to help her, so she flew across the country to meet this dr. I can't tell you how blessed we feel to have him in our "backyard".
Wednesday, March 11, 2009
Goldie's birth story
The contractions started on the evening of Saturday, March 10th. I went to bed at 11 hoping they would just go away. I didn’t feel ready yet. I woke up at 1:15 am have strong contractions every 10-15 minutes. I woke Hank up and walked around the house. At 2 am they were closer together. We decided to go to the hospital. Swatcho was born very quickly without painful regular contractions. (please don’t hate me she made up for it later) Hank's mom came to stay with the girls.
We get to the hospital and find out I’m only dilated 2cm so we can go home. Yes! But, while we’re hanging out there they decided I needed to watch some videos. One is about shaken baby syndrome the other is about c-sections. We started to watch the first one, then I said “eff this” and shut the TV off. Since when does childbirth come with required viewing material?
I was having a lot of back labor and the contractions were pretty uncomfortable so I didn’t rest much even when we got home. By lunchtime on Sunday they were 15-30 minutes apart. At this point, I was still in denial about being in labor. I thought I had another 2 weeks to go and that the contractions would just dwindle away and I could go on being pregnant. This is strange because at this point in my other pregnancies I wanted to be done. But, this time, mentally I wasn’t ready for her to be born and couldn’t put my finger on the reason why.
Around 2pm my labor picked up again. These contractions were more intense and I needed to find some pain relief. I got in a warm bath and was able to relax. The sweetest part is that Swatcho stayed by my side the entire time. Hank was downstairs “nesting” by hanging new trim in the living room. After getting out of the tub I took a nap in Mini Me's bedroom. Swatcho played next to the bed while I rested.
I think it was around 5 pm when I went downstairs. I may have gotten something to eat. I have this huge fear of going to the hospital and being denied food and then being hungry after the baby is born, but the kitchen is closed. (Oh wait, that happened to me once, when Mini Me was born)
Anyway, I was on my knees with my head on the couch trying to deal with the pain. I ask Hank to come help by rubbing my back. He says “hold on, let me finish nailing this up” Um, NO! That was when we went to the hospital, because he would have to focus on me there.
Now, I’m at 6 cm. I have to admit I was a little disappointed, in 15 hours I dilated 4 cm. My OB gets there an hour later and I’m still 6 cm. She says she’s going to break my water. So, I clamp my legs together and tell her “No, we talked about this. I don’t want my water broken.” She says “Yes, you’re still at 6 blah blah blah I don’t think it will cause you to be in more pain blah blah blah.” Then I cave and say “o.k.”
Well, I immediately was in tremendous pain and started asking for drugs. The wonderful nurse tried to talk me out of it. Then said she would just give me a little bit because she really thought I could make it without anything. Looking back, I know I was in transition, but at the time I thought it was too soon. Now it’s been less than 10 minutes since the OB broke my water and I feel the urge to push. (I just went from 6 cm to 10 cm in like 8 minutes!) Then I can feel Goldie crowning and I tell them I need to push. The OB says “don’t let her push, she can’t be dilated enough,” I yell “it’s too late” Then she lifts up the sheet and says, “oh, yeah, well go ahead then” A couple pushes later Golden Marie joined our lives in a new way.
The first thing they notice is her short umbilical cord. They had to cut it before I could hold her. They laid her on my stomach. She was just screaming and kicking with black hair just like her sisters as babies. But, I noticed right away her skin was saggy. Her knees were baggy like an elephant. I asked them why and no one answered. They weighed her and did her apgar scores. Goldie was 6 lbs 1 oz and 18 inches long; much smaller than my other two. Her apgars were 8 and 10; this made me feel better.
While the OB is delivering the placenta she remarks on how quickly everything went. I remind her that I told her not to break my water.
Afterwards, while I’m holding her again, my right hand keeps going numb and contracting in toward my arm. The blood pressure cuff would tighten and this would happen over and over. I kept telling the nurse and all they did was stare at my arm. So, finally I throw the blood pressure cuff on the floor and tell them they will have to take my bp the old fashioned way. The nurse isn’t making eye contact with me anymore and she’s biting her lip. I figure I must have pissed her off.
I try nursing Goldie for the first time, but she doesn’t seem interested. Hank takes a picture of me trying to feed her anyway. I figure, no big deal, Swatcho wouldn’t nurse right after she was born either.
They take Goldie to the nursery for footprints and I make Hank follow them. The nurse helps me get a shower, but she’s very quiet now. My OB is gone.
Goldie comes back with her Daddy and gets to meet her sisters, grandparents, aunts and uncles.
As I type this I realize I still have a lot of emotions surrounding Goldie's birth. Mother's intuition is strong and I could tell something was not right after she was born. It kept me from relaxing and enjoying the moment. I just realized I have no pictures of us as a family from that night or of Hank with his newest daughter. I want to look back on it as a joyous time, but I still feel all the uncertainty. Maybe I should stop now and post the heavy stuff another time.
We get to the hospital and find out I’m only dilated 2cm so we can go home. Yes! But, while we’re hanging out there they decided I needed to watch some videos. One is about shaken baby syndrome the other is about c-sections. We started to watch the first one, then I said “eff this” and shut the TV off. Since when does childbirth come with required viewing material?
I was having a lot of back labor and the contractions were pretty uncomfortable so I didn’t rest much even when we got home. By lunchtime on Sunday they were 15-30 minutes apart. At this point, I was still in denial about being in labor. I thought I had another 2 weeks to go and that the contractions would just dwindle away and I could go on being pregnant. This is strange because at this point in my other pregnancies I wanted to be done. But, this time, mentally I wasn’t ready for her to be born and couldn’t put my finger on the reason why.
Around 2pm my labor picked up again. These contractions were more intense and I needed to find some pain relief. I got in a warm bath and was able to relax. The sweetest part is that Swatcho stayed by my side the entire time. Hank was downstairs “nesting” by hanging new trim in the living room. After getting out of the tub I took a nap in Mini Me's bedroom. Swatcho played next to the bed while I rested.
I think it was around 5 pm when I went downstairs. I may have gotten something to eat. I have this huge fear of going to the hospital and being denied food and then being hungry after the baby is born, but the kitchen is closed. (Oh wait, that happened to me once, when Mini Me was born)
Anyway, I was on my knees with my head on the couch trying to deal with the pain. I ask Hank to come help by rubbing my back. He says “hold on, let me finish nailing this up” Um, NO! That was when we went to the hospital, because he would have to focus on me there.
Now, I’m at 6 cm. I have to admit I was a little disappointed, in 15 hours I dilated 4 cm. My OB gets there an hour later and I’m still 6 cm. She says she’s going to break my water. So, I clamp my legs together and tell her “No, we talked about this. I don’t want my water broken.” She says “Yes, you’re still at 6 blah blah blah I don’t think it will cause you to be in more pain blah blah blah.” Then I cave and say “o.k.”
Well, I immediately was in tremendous pain and started asking for drugs. The wonderful nurse tried to talk me out of it. Then said she would just give me a little bit because she really thought I could make it without anything. Looking back, I know I was in transition, but at the time I thought it was too soon. Now it’s been less than 10 minutes since the OB broke my water and I feel the urge to push. (I just went from 6 cm to 10 cm in like 8 minutes!) Then I can feel Goldie crowning and I tell them I need to push. The OB says “don’t let her push, she can’t be dilated enough,” I yell “it’s too late” Then she lifts up the sheet and says, “oh, yeah, well go ahead then” A couple pushes later Golden Marie joined our lives in a new way.
The first thing they notice is her short umbilical cord. They had to cut it before I could hold her. They laid her on my stomach. She was just screaming and kicking with black hair just like her sisters as babies. But, I noticed right away her skin was saggy. Her knees were baggy like an elephant. I asked them why and no one answered. They weighed her and did her apgar scores. Goldie was 6 lbs 1 oz and 18 inches long; much smaller than my other two. Her apgars were 8 and 10; this made me feel better.
While the OB is delivering the placenta she remarks on how quickly everything went. I remind her that I told her not to break my water.
Afterwards, while I’m holding her again, my right hand keeps going numb and contracting in toward my arm. The blood pressure cuff would tighten and this would happen over and over. I kept telling the nurse and all they did was stare at my arm. So, finally I throw the blood pressure cuff on the floor and tell them they will have to take my bp the old fashioned way. The nurse isn’t making eye contact with me anymore and she’s biting her lip. I figure I must have pissed her off.
I try nursing Goldie for the first time, but she doesn’t seem interested. Hank takes a picture of me trying to feed her anyway. I figure, no big deal, Swatcho wouldn’t nurse right after she was born either.
They take Goldie to the nursery for footprints and I make Hank follow them. The nurse helps me get a shower, but she’s very quiet now. My OB is gone.
Goldie comes back with her Daddy and gets to meet her sisters, grandparents, aunts and uncles.
As I type this I realize I still have a lot of emotions surrounding Goldie's birth. Mother's intuition is strong and I could tell something was not right after she was born. It kept me from relaxing and enjoying the moment. I just realized I have no pictures of us as a family from that night or of Hank with his newest daughter. I want to look back on it as a joyous time, but I still feel all the uncertainty. Maybe I should stop now and post the heavy stuff another time.
Friday, February 27, 2009
Building On Our Children's Strengths
I read a post at The Rocking Pony which had a link to this great video called Animal School. It felt like a gentle reminder that I need to keep trusting my mother's intuition.
Mini Me is getting a little help in math from her principal. But, I decided to let her focus on what she loves at home. I took her to the library to get some books and bought a book we can both read while I was at Target this week. I was honest with the principal. I told him my one on one time with her is precious and I'm not going to spend it doing math facts. I thanked him for understanding my job as her mom and our needs as a family.
Then, she devoured the library books. I bought her an American Girl book at Barnes & Noble this weekend (yes, I need help with my book addiction) and she made quick work of that one, too. The other book I bought was the young reader's version of Three Cups of Tea. I was looking for a book for myself, but thought this would be a better purchase. Less money and we can both read it. It also has pictures and maps that aren't in the adult version.
Here's a picture from about 5 years ago! She'll be 10 this week so I'm allowed to reminisce.
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.
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
Monday, February 2, 2009
Good Things
~ The Steelers won the Super Bowl! What teamwork and determination, definitely worth letting the kids stay up late for. I love how you can never count them out, no matter how few seconds are left on the clock.
~ Goldie is moving from the highchair to the table. See, everyday when Hank gets home from work, after Goldie gives him his hugs and kisses, she goes to the kid's cupboard, gets out a plate and sets it at the table. Sometimes this is followed by a bowl or cup. Then she pulls out the chair and stares at me.
I brought my yellow seamstress' tape measure to Target and found a booster seat with a belt that would fit under the table without smooshing her chubby thighs. The other 3 booster seats we already own, were too high and she kept sliding off the phone book. Now, time to learn this girl some table manners.
~ Hank's job. This is a big one for us. As the economy is tanking, we are rising from the abyss. My part time job was eliminated when Goldie was born and Hank was laid off when she was 8 weeks old. We applied for both SSI and unemployment. But, here's the sweet part, SSI only counts half of your wages, but ALL of the unemployment. So, they decided we should pay back 3 months worth of Goldie's SSI money. Nothing like kicking somebody when their down. Hank tried to hang on to his job at his old employer for way too long. They were letting us keep our health insurance, which is no small thing, because the state was paying for a portion of it and they were only 3 miles from our house.
Fast forward to this fall, I
~ I have a legitimate reason for not cleaning my kitchen floor and letting my kids run barefoot. It seems dirt really is good for the immune system. But, I'm going to have to draw the line at becoming infested with WORMS. Maybe Swatcho really does have a tapeworm? She's got a bullet proof immune system and despite how much food she packs away has wrists the size of a two year old. Hmmm.
Thursday, January 1, 2009
Happy New Year!
It started out nice enough. Mini Me (oldest dd) had a friend over and we were making popcorn on the stove. I'm embarassed to say this is a first for us. I decided it was time to give up the teflon coated microwave popcorn. Besides, if we make it ourself its dairy free and Goldie can eat it too. My mom bought me a Whirly Pop for Christmas and Hull-less White Popcorn.
Goldie was chowing on the popcorn.
Now I noticed Swatcho seemed a little subdued. Which is not at all like her. So I asked her, like 6 times or so, how she was feeling. So imagine my surprise when she pukes all over the carpet, couch, and even a little on our guest. This is another example of mother's intuition. I should know better than to ignore my gut feeling.
So, Hank slept downstairs with her and Goldie and I sacked out in the big bed. Until 3:15 when Goldie started puking. I was already up because she was squirmy so I rushed her to the bathroom. I still had to change my sheets, but its better than finding a toddler covered in puke and having to give her a bath in the middle of the night. I'll take the family bed over a crib any day. She bounced back very quickly and was nursing by 8 this morning.
Goldie was chowing on the popcorn.
Now I noticed Swatcho seemed a little subdued. Which is not at all like her. So I asked her, like 6 times or so, how she was feeling. So imagine my surprise when she pukes all over the carpet, couch, and even a little on our guest. This is another example of mother's intuition. I should know better than to ignore my gut feeling.
So, Hank slept downstairs with her and Goldie and I sacked out in the big bed. Until 3:15 when Goldie started puking. I was already up because she was squirmy so I rushed her to the bathroom. I still had to change my sheets, but its better than finding a toddler covered in puke and having to give her a bath in the middle of the night. I'll take the family bed over a crib any day. She bounced back very quickly and was nursing by 8 this morning.
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