Wow it's been awhile since that last time I posted. I guess it's time to catch up. Where do I begin?
Nate started Kindergarten. The first couple of weeks was hard. Everyday he cried and wanted to came home. For the first 3 weeks I was talking to his teacher on a daily base. Now that we have a schedule and things are getting better. Nate comes home everyday talking about his teachers and friends. I'm happy that he is happy about school. I hope he keeps that same attitude for the next 12 years. lol
Now that he has started school I have realized how far behind he is. I try to do a lesson everyday but it is hard to keep his attention. I went to his school today to observe him. I wanted to see how he acts in class. Watching him in his class with everyone made me realize how special he is. He was the only kid that made sure that everyone was sitting on the rug. If they weren't on the rug he was telling them to "sit".
The one thing I was worried about Nate starting school, was how the other kids where going to treat him. I'm not worried as much anymore. Nate was siting by himself looking at book and this girl (Very cute) sat down next to him and started talking to him. Nate did look around but started talking to her. I could not hear them so not sure what or how much talking the did. It was very cute. It was nice to see the other kids playing with him.
Have a good day and God bless
Thursday, September 29, 2011
Thursday, June 2, 2011
Busy Busy
Wow it's been awhile. We have had a busy month. Not sure where to begin. Last month we went and seen the Genetic counselor. That was interesting. I pretty much knew almost all the info they had to give me. I did learn some new info. While we were down in Indy we also had Nate's 6 month check-up with the Neurologist. The neurologist said that Nate was looking good on her end. She also said we don't have to see her but once a year. That is awesome!!!
This past week Nate graduated from preschool. Now it's time to look towards the future. Nate will start Kindergarten in the fall. He will be in a mainstream class with an aid. I'm a little nervous. OK I'm really nervous. My baby is getting big and growing up. I know its just kindergarten, but he is my oldest and my baby. So it's a little hard for me. ha ha. I know it will all be OK.
Since school has been out we have had some meltdowns. We have been on a schedule for so long that the change has caused some back lashes. We are working on them. I know I need to be strong and firm. I'm just looking forward to the summer. The kiddo's have been outside everyday having fun. I hope my neighbors don't mind a meltdown from time to time. OK maybe a couple a day. lol.
I hope everyone has a good day. God bless
This past week Nate graduated from preschool. Now it's time to look towards the future. Nate will start Kindergarten in the fall. He will be in a mainstream class with an aid. I'm a little nervous. OK I'm really nervous. My baby is getting big and growing up. I know its just kindergarten, but he is my oldest and my baby. So it's a little hard for me. ha ha. I know it will all be OK.
Since school has been out we have had some meltdowns. We have been on a schedule for so long that the change has caused some back lashes. We are working on them. I know I need to be strong and firm. I'm just looking forward to the summer. The kiddo's have been outside everyday having fun. I hope my neighbors don't mind a meltdown from time to time. OK maybe a couple a day. lol.
I hope everyone has a good day. God bless
Saturday, April 9, 2011
I am a mother of a son with fragile x. I have known this since November. Randy has known as long as me. Why is it that he is still in denial??? I'm not sure how much longer I can handle the denial. Next month we go to Indy to see Nate's doctor I hope randy snaps out of this.
Today Randy went to his moms and when he left he took my truck keys also. Nate wanted to go and see dad. We were getting ready when I realized we had no keys. O my. The meltdown started. I tried to explain to Nate the dad had our keys so we couldn't go. Nate just cried and had a fit like no other. I tried to put his focus on other stuff. It was just not working. I finally got a hold of randy. (hour later) He came home and brought us the keys. When Nate seen dad driving in to the drive. That boys eyes just let up. Nate went yelling for dad and asked for the keys. It was so cute.
Sorry I had to vent. I hope everyone has a good day:)
Today Randy went to his moms and when he left he took my truck keys also. Nate wanted to go and see dad. We were getting ready when I realized we had no keys. O my. The meltdown started. I tried to explain to Nate the dad had our keys so we couldn't go. Nate just cried and had a fit like no other. I tried to put his focus on other stuff. It was just not working. I finally got a hold of randy. (hour later) He came home and brought us the keys. When Nate seen dad driving in to the drive. That boys eyes just let up. Nate went yelling for dad and asked for the keys. It was so cute.
Sorry I had to vent. I hope everyone has a good day:)
Friday, April 1, 2011
Hopes and Dreams
For years I beat myself up wondering what I did wrong when I was pregnant. What did I do that caused all these delayment. Was it because I drank coffee? Was it because I was around second hand smoke? Then I got the call from the doctor telling me that Nate had Fragile X. I was not sure if I was happy that I had answer or mad because I did give him this. The past six months I have done a lot of soul searching.
As a parent we have all these BIG hopes and dreams for our children. I do!! When I first found out Nate had fx, the first questions I had was "what does his future hold". Will he be able to live on his own? Will he be able to handle school and college? What about a job and drive a car? I know only the future will tell. What I do know I need to be as positive as I can be.
Nate loves school. He knows all the kids names in his class. He even has a crush on his teacher. (Its so cute) Nate counted backward from 5 to 1 the other day. I was so proud of him. He did it all on his own. I know down the road he will have hurdles. I hope as a mom that I can give him the confidence for him to jump over those hurdles. My hopes and dreams are still there. My goals for him are day by day goals.
I am blessed that I have a wonderful little boy. The days where I'm stressed all I have to do is look at his smile. My heart melts. I pray each day that the big mean world won't be mean to my wonderful little boy.
I hope everyone has a good day:)
As a parent we have all these BIG hopes and dreams for our children. I do!! When I first found out Nate had fx, the first questions I had was "what does his future hold". Will he be able to live on his own? Will he be able to handle school and college? What about a job and drive a car? I know only the future will tell. What I do know I need to be as positive as I can be.
Nate loves school. He knows all the kids names in his class. He even has a crush on his teacher. (Its so cute) Nate counted backward from 5 to 1 the other day. I was so proud of him. He did it all on his own. I know down the road he will have hurdles. I hope as a mom that I can give him the confidence for him to jump over those hurdles. My hopes and dreams are still there. My goals for him are day by day goals.
I am blessed that I have a wonderful little boy. The days where I'm stressed all I have to do is look at his smile. My heart melts. I pray each day that the big mean world won't be mean to my wonderful little boy.
I hope everyone has a good day:)
Saturday, March 26, 2011
I was against Face book and other social networks. A friend of mine suggest I try it so we can stay connected. So I tried it. I'm glad I did!!! In the last 4 months I have been in contact with 100 + families where FX was part of them in one way or another. Everyone has asked what "My story was". So that is why I decided to do this blog. Nate my 5 year old (fx) is my world. He was my first born, the first one to carry on the name. In my eyes he is perfect in every way! I told my husband when Nate was born that I kissed a frog (husband) I got my prince (Nate).
As I talk to different families that are effected with FX in one way or another, every ones story is different. I'm very blessed that I have this extended family. It's the best "in-laws" anyone can ask for. We all belong to an awesome group where we can ask any question and get feed back without any judgement. At one point or another someone has/had gone thru what I'm going thru. The feedback from other families are great. I find some funny. One person asked the other day about jumping on the bed. I had to laugh. Nate LOVES to jump on the bed. If he could he would do it all day long. As I read the responses, I was amazed how many other children are the same way. It was comforting to know. I hope this make sense.
Nate and I have our good and bad days. Some days he can be the best little boy around. There are days where the meltdowns and the mood swings are crazy. I can tell when he is overwhelmed b/c those are the days he chews on everything he can get his hands on. Cloth books are the best!! I bet we have been thru thousand of book b/c of Nate chewing on them. I try to avoid things/gatherings that are going to overwhelm him.
My other two daughters are to little to understand what is going on. Hannah (3) and Nate are 19 months apart. They have learned alot from each other. Some good and some bad. Alyson is just to little. She thinks the big brother and sister are the funnest around. I will leave u on that. Until the next time I hope everyone has a good day!!!
As I talk to different families that are effected with FX in one way or another, every ones story is different. I'm very blessed that I have this extended family. It's the best "in-laws" anyone can ask for. We all belong to an awesome group where we can ask any question and get feed back without any judgement. At one point or another someone has/had gone thru what I'm going thru. The feedback from other families are great. I find some funny. One person asked the other day about jumping on the bed. I had to laugh. Nate LOVES to jump on the bed. If he could he would do it all day long. As I read the responses, I was amazed how many other children are the same way. It was comforting to know. I hope this make sense.
Nate and I have our good and bad days. Some days he can be the best little boy around. There are days where the meltdowns and the mood swings are crazy. I can tell when he is overwhelmed b/c those are the days he chews on everything he can get his hands on. Cloth books are the best!! I bet we have been thru thousand of book b/c of Nate chewing on them. I try to avoid things/gatherings that are going to overwhelm him.
My other two daughters are to little to understand what is going on. Hannah (3) and Nate are 19 months apart. They have learned alot from each other. Some good and some bad. Alyson is just to little. She thinks the big brother and sister are the funnest around. I will leave u on that. Until the next time I hope everyone has a good day!!!
Thursday, March 24, 2011
Wow my first blog!! Well here it goes:) My name is Sarah, I've been married for 8 years. My husband Randy and I have 3 wonderful children. Nathaniel is 5, Hannah is 3 and Alyson is 8 months. I wanted to start a blog about our family and the world of Fragile X.
Let me start from the beginning. When Nate was born he has fluid in his ears. By the time he turned 14 months he had 3 double ear infections. He didn't crawl until he was 12 months and delayed in his speech. So we decided to put tubes in his ears. Wow that made some difference. Some speech started to come. I thought wow we should have done this long time ago. He was receiving speech services thru First Steps. Nate's speech was doing better but he was delayed in all other areas.
When Nate turned three he was put into a Developmental preschool. On the first day the teacher noticed him having staring spells. So the next week Nate had a EEG done. That came back that it was abnormal. So off to Riley we go to see a specialist. The Neurologist we was sent to was awesome. She told us that with Nate history we should have him tested for Fragile X. Randy and I decided not to do the test. We never heard of Fragile X. So I come home and did some research. Not sure where to look first I didn't even look.
Well we go back every 6 months to see the Peds Neurologist. She would ask every time about the test. This time when we where there I had concerns about Nate. He was have meltdown after meltdown. His speech was coming but still not using full sentences. I was getting frustrated. I was starting to notice he was not like other 4 year olds. Hell my 2 year old was more advanced then Nate. Finally last October I finally had him tested. Well the test come back that he did have FX and it was Full mutation.
Fragile X syndrome is the most common inherited cause of mental impairment. It is the number one cause of Autism. Full mutation means that his DNA repeats over 200 CGG.
When we got the results I was happy we had answers. Randy was not happy about the results and not happy with me. Since FX inherited that means I am a carrier. I didn't know that b/c I opt out of the testing when I was pregnant.
Since we found out about Nate and Fx. Our world has changed alittle. For me it helps me understand him more. It also means that the girls might be carriers also. I have not tested them. They seem to be fine. So that is our story. I have a habit of rambling. You want to read more about FX please visit http://www.fragilex.org/.
Hope everyone has a great day:)
Let me start from the beginning. When Nate was born he has fluid in his ears. By the time he turned 14 months he had 3 double ear infections. He didn't crawl until he was 12 months and delayed in his speech. So we decided to put tubes in his ears. Wow that made some difference. Some speech started to come. I thought wow we should have done this long time ago. He was receiving speech services thru First Steps. Nate's speech was doing better but he was delayed in all other areas.
When Nate turned three he was put into a Developmental preschool. On the first day the teacher noticed him having staring spells. So the next week Nate had a EEG done. That came back that it was abnormal. So off to Riley we go to see a specialist. The Neurologist we was sent to was awesome. She told us that with Nate history we should have him tested for Fragile X. Randy and I decided not to do the test. We never heard of Fragile X. So I come home and did some research. Not sure where to look first I didn't even look.
Well we go back every 6 months to see the Peds Neurologist. She would ask every time about the test. This time when we where there I had concerns about Nate. He was have meltdown after meltdown. His speech was coming but still not using full sentences. I was getting frustrated. I was starting to notice he was not like other 4 year olds. Hell my 2 year old was more advanced then Nate. Finally last October I finally had him tested. Well the test come back that he did have FX and it was Full mutation.
Fragile X syndrome is the most common inherited cause of mental impairment. It is the number one cause of Autism. Full mutation means that his DNA repeats over 200 CGG.
When we got the results I was happy we had answers. Randy was not happy about the results and not happy with me. Since FX inherited that means I am a carrier. I didn't know that b/c I opt out of the testing when I was pregnant.
Since we found out about Nate and Fx. Our world has changed alittle. For me it helps me understand him more. It also means that the girls might be carriers also. I have not tested them. They seem to be fine. So that is our story. I have a habit of rambling. You want to read more about FX please visit http://www.fragilex.org/.
Hope everyone has a great day:)
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