Tuesday, December 21, 2010
Picture Time
This day brought tears to my eyes, it was first time Prestyn interacted with his baby brother for longer then two seconds.
Degan and his impersonation of E.T.
Prestyn taking a break from playing with Connor and Tyler to watch a movie, this break did not last long!
The smile that never leaves Cruzie's face!
Degan setting up his own personal tree!! He was so excited!
The first time Cruz was in his jumper, he was more interested in eating his bib! After a week he is now jumping!
Cruz's First Turkey Day! He even got a taste of mashed potatoes!
When I was taking a shower Prestyn managed to climb into the jumper, what a little rascal! He can get in and out of it!Taking the bad with the good
This year has definitely had it's ups and downs. Never in our wildest dreams would we have imagined having to learn our baby boy had autism, on the other hand we welcomed a baby that cannot be any happier. I honestly think Cruz was put into our life for a reason, with all the stress, frustration and tears we have endured dealing with Prestyn's condition, Cruz will smile and laugh and remind us that everything will be ok. All of our boys know how to make us smile when we need it most!
Then:
Prestyn in the back, prior to his diet change, his poor tummy:(
Now:
I cannot find a belly picture of Prestyn, however just in this picture you can see a huge difference in the belly.
Last week we got to spend an evening in Prestyn's class for a small Christmas party. It was low key and mostly a way for parents and teachers to share stories and watch their children interact with one another. Prestyn insisted that they have a "circle time" and wanted to sing his favorite songs, it was great to see all the children so enthusiastic about singing! That night it was great reassurance that we are not alone, there are parents who are going through the same thing as us. There are children who are not as fortunate as Prestyn to be diagnosed as high-functioning, children who may not ever be able to fully communicate with their mommy and daddy and then there are those children who will.
Something that I have to share because it really touched my heart; there was a young single mom there who's son was just diagnosed, I cannot even begin to imagine what she is going through, she looked scared, she looked unsure. I just wanted to hug her and tell her everything will be ok. The night before the party I made some Christmas crayons and got some coloring books to give to the students in Prestyn's class. When I handed her the little package she got this huge smile on her face and was so thankful. I think it was just what she needed that night, like we once used to feel, she now knows she is not alone.
In other Prestyn related news.....
Prestyn's pediatrician ordered some medical testing to be done on Prestyn. Although there is not definite reasons as to what causes Autism there are certain things that may or may not be linked to it . The first two tests were done through a blood draw. Dr. Zipp would like to start ruling certain things out. First, celiac disease then Fragile X. The Celiacs test was because of the terrible reaction Prestyn has when he has anything with Gluten. Well we got the results back and that was negative. We are still waiting on the Fragile X. Dr. Zipp is confident that will also be negative. What now? Well with no celiac disease, it just further supports the research that certain doctors have preformed that say children with Autism cannot digest the gluten and it messes with their digestive system which in turns sends signals to their brain, which is english for Innate Immune Abnormalities. We notice when Prestyn does have gluten, his stomach looks so bloated and his behavior is not quite the same, more meltdowns and less cooperative. Hopefully in the next year we will see a gastrointestinal doctor and also get some genetic testing because there have been some studies saying that it is caused by chromosomes and genes in the parents. I am not sure I fully believe or trust these studies. Although we may NEVER know what caused Prestyn's Autism it will be nice to know what didn't cause it. It is so frustrating that there are all these contradicting studies, but we can never loose hope and just keep taking everything as serious as possible.
Thank you to my readers who continue and read my blog, I am not writing about Prestyn and our journey to gain attention, rather I am writing about it in the hopes that one day a parent who is going through the same thing will find hope. It is also great therapy for me to share with you all the happiness and struggles we are going through, so I do not keep it bottled up inside!
Something that I have to share because it really touched my heart; there was a young single mom there who's son was just diagnosed, I cannot even begin to imagine what she is going through, she looked scared, she looked unsure. I just wanted to hug her and tell her everything will be ok. The night before the party I made some Christmas crayons and got some coloring books to give to the students in Prestyn's class. When I handed her the little package she got this huge smile on her face and was so thankful. I think it was just what she needed that night, like we once used to feel, she now knows she is not alone.
In other Prestyn related news.....
Prestyn's pediatrician ordered some medical testing to be done on Prestyn. Although there is not definite reasons as to what causes Autism there are certain things that may or may not be linked to it . The first two tests were done through a blood draw. Dr. Zipp would like to start ruling certain things out. First, celiac disease then Fragile X. The Celiacs test was because of the terrible reaction Prestyn has when he has anything with Gluten. Well we got the results back and that was negative. We are still waiting on the Fragile X. Dr. Zipp is confident that will also be negative. What now? Well with no celiac disease, it just further supports the research that certain doctors have preformed that say children with Autism cannot digest the gluten and it messes with their digestive system which in turns sends signals to their brain, which is english for Innate Immune Abnormalities. We notice when Prestyn does have gluten, his stomach looks so bloated and his behavior is not quite the same, more meltdowns and less cooperative. Hopefully in the next year we will see a gastrointestinal doctor and also get some genetic testing because there have been some studies saying that it is caused by chromosomes and genes in the parents. I am not sure I fully believe or trust these studies. Although we may NEVER know what caused Prestyn's Autism it will be nice to know what didn't cause it. It is so frustrating that there are all these contradicting studies, but we can never loose hope and just keep taking everything as serious as possible.
Thank you to my readers who continue and read my blog, I am not writing about Prestyn and our journey to gain attention, rather I am writing about it in the hopes that one day a parent who is going through the same thing will find hope. It is also great therapy for me to share with you all the happiness and struggles we are going through, so I do not keep it bottled up inside!
Then:
Prestyn in the back, prior to his diet change, his poor tummy:(Now:
I cannot find a belly picture of Prestyn, however just in this picture you can see a huge difference in the belly.Wednesday, December 8, 2010
P-R-E-S-T-Y-N
How do you spell Prestyn? "P-R-E-S-T-Y-N." Yay, we all say with such excitement!!!
Not a day goes by in our home that Prestyn will not say something or do something that has our jaws dropped to the floor. Last night I was sitting on the couch feeding Cruz. Prestyn walked up to us, pointed at the bottle and said bottle, and spelled it. I looked at Amos and said "did he just spell what I think he did?" Amos said yes he did!! I was in such amazement, that this little boy who could not even say the word bottle over 7 months ago was now spelling it! The same goes for his name, he can spell it over and over!
We always believed that Prestyn would learn to communicate, just did not know we would be hearing him use multiple words in a sentence. When he is saying something on his own, he will use 3-4 words. When he repeats after us, he uses about 7 words.
Do Amos and I take all the credit for this improvement? Nooo way. Ms. Maria and Ms. Melinda along with his speech therapist Sarah and his occupational therapist Angela have worked day in and day out with Prestyn and have helped him use his intelligence in a productive way.
Even before we got the diagnosis on Prestyn, we knew he was a smart little boy. He would sing you a song he just heard, try and repeat words from movies, look at a shape and attempt to tell you what it was. He could watch the same movie or listen to the same song over and over and never get tired of it. HE LOVED REPETITION, he still does, but it is getting a little bit easier to change things up on him without him having a complete meltdown.
Today, his teachers are in awe. They send home a report everyday on what they did for the day and how he did. Well, last week they introduced cards with dots on them. It was Prestyn's job to count the dots and find the corresponding number on another card. Well they reported that he did just that, with little help he was able to complete the activity! The principal even visited his classroom last week and got to work with Prestyn! Ms. Maria told me she feel in love with him and cannot wait to work with him again. His teachers have been transitioning Prestyn into another class. Prestyn is the only child in his class that is verbal, and they think that he needs to be around other children who talk and can be more social. This is going to be a slow process, with Prestyns social skills where they are, and his lack of adjusting to new environments, they are spending 5 minutes in the new class. Either Ms. Maria or Ms. Melinda stay with him to help with the adjustment. It is everyone's hope that when it comes to the full transition he will not regress. They are confident that a slow transition will keep that from happening!
We are still working on some behavioral issues and some social ones as well. It is very hard when we go out to the store or somewhere there are other people besides our family, because people see Degan and Prestyn and want to talk to them. Well if Prestyn has never seen you before or even if he has, and he just does not want to talk, he will throw himself on the floor and bang his head. It really freaks people out, and it gives me a tummy ache, I just ask them to leave him alone and continue on their way. It makes it worse if they stand there and try and console him or continue to try and talk to him. This one is a tough one for us to deal with, we cannot just keep him isolated to avoid situations like this, we are still trying to figure out ways to control these types of situations.
All in all we are very pleased with Prestyns improvement. He has come such a long way. Any one that tells you that Early Intervention does not work with children on the spectrum needs to look at Prestyn. I am very confident that had it not been for Dr. Zipps advice on getting Prestyn therapy early on we would be fighting a loosing battle. I am glad Amos and I were not the parents who stand in denial that something is developmentally wrong with our child. I am also glad for the support system that we have, because if it were not for them we would also not be where we are today!
Not a day goes by in our home that Prestyn will not say something or do something that has our jaws dropped to the floor. Last night I was sitting on the couch feeding Cruz. Prestyn walked up to us, pointed at the bottle and said bottle, and spelled it. I looked at Amos and said "did he just spell what I think he did?" Amos said yes he did!! I was in such amazement, that this little boy who could not even say the word bottle over 7 months ago was now spelling it! The same goes for his name, he can spell it over and over!
We always believed that Prestyn would learn to communicate, just did not know we would be hearing him use multiple words in a sentence. When he is saying something on his own, he will use 3-4 words. When he repeats after us, he uses about 7 words.
Do Amos and I take all the credit for this improvement? Nooo way. Ms. Maria and Ms. Melinda along with his speech therapist Sarah and his occupational therapist Angela have worked day in and day out with Prestyn and have helped him use his intelligence in a productive way.
Even before we got the diagnosis on Prestyn, we knew he was a smart little boy. He would sing you a song he just heard, try and repeat words from movies, look at a shape and attempt to tell you what it was. He could watch the same movie or listen to the same song over and over and never get tired of it. HE LOVED REPETITION, he still does, but it is getting a little bit easier to change things up on him without him having a complete meltdown.
Today, his teachers are in awe. They send home a report everyday on what they did for the day and how he did. Well, last week they introduced cards with dots on them. It was Prestyn's job to count the dots and find the corresponding number on another card. Well they reported that he did just that, with little help he was able to complete the activity! The principal even visited his classroom last week and got to work with Prestyn! Ms. Maria told me she feel in love with him and cannot wait to work with him again. His teachers have been transitioning Prestyn into another class. Prestyn is the only child in his class that is verbal, and they think that he needs to be around other children who talk and can be more social. This is going to be a slow process, with Prestyns social skills where they are, and his lack of adjusting to new environments, they are spending 5 minutes in the new class. Either Ms. Maria or Ms. Melinda stay with him to help with the adjustment. It is everyone's hope that when it comes to the full transition he will not regress. They are confident that a slow transition will keep that from happening!
We are still working on some behavioral issues and some social ones as well. It is very hard when we go out to the store or somewhere there are other people besides our family, because people see Degan and Prestyn and want to talk to them. Well if Prestyn has never seen you before or even if he has, and he just does not want to talk, he will throw himself on the floor and bang his head. It really freaks people out, and it gives me a tummy ache, I just ask them to leave him alone and continue on their way. It makes it worse if they stand there and try and console him or continue to try and talk to him. This one is a tough one for us to deal with, we cannot just keep him isolated to avoid situations like this, we are still trying to figure out ways to control these types of situations.
All in all we are very pleased with Prestyns improvement. He has come such a long way. Any one that tells you that Early Intervention does not work with children on the spectrum needs to look at Prestyn. I am very confident that had it not been for Dr. Zipps advice on getting Prestyn therapy early on we would be fighting a loosing battle. I am glad Amos and I were not the parents who stand in denial that something is developmentally wrong with our child. I am also glad for the support system that we have, because if it were not for them we would also not be where we are today!
Wednesday, December 1, 2010
Sleep, what is that?
In one of my previous posts I mentioned that there is never a dull moment in our house, not even when we should all be sleeping. Well I cannot help but write about sleep now since it seems to be the thing that we get the least of.
Degan and Prestyn both started sleeping through the night at about 3 months, this was so nice, no middle of the night feedings, no trying to make a bottle half asleep, just straight 8 hours of drool on the pillow and waking up feeling nice and rested.
A couple years passed and it was time to take Prestyn out of his crib. I must say, had he not figured how to jump out he might still be in one! Prior to Cruz being born and being in his new "big boy bed" Prestyn would become increasingly more difficult to put to bed. We could lay him down at 8 and if we were lucky he would be asleep by 11. Then be up throughout the night. Later after doing some research, we found out it is not uncommon for children with autism to have sleep disturbances throughout the night. With the help and advice from other parents with autistic children and some research we were able to get a handle on some of the problem naturally. The solution could not have come at a better time, because Prestyn would be starting school and need to be well rested.
Cruz came along just as we figured out how to get Prestyn to sleep better and have less disturbances at night. Just like any other newborn with the exception of a few he was up eating every three hours. As the months went on this time would slowly increase. We are now up to one feeding at night. Now you cannot look at him and tell me that he HAS to have his night time feeding, however if you are in our home between 2 and 4 when he wakes up you could not tell. He cries as if he is starving and not been feed in days. We even have to wait to burp him until he has guzzled down 6 oz or he gets very angry. And if you try and change his diaper before he has finished his bottle, you have an even angrier baby.
Im not sure I can do the cry it out method, but if I have a night like we did a few nights ago that may be the only option. This was by far one of the worst nights! We typically like for Degan and Prestyn to be in bed lights out at 9, actually falling asleep, well that brings me to this:
Last Tuesday we put them to bed usual time, and we were so exhausted we went to bed at the same time. Before I could even rest my head on my pillow Prestyn comes into the room, the first of many attempts to sneak into bed with us. This would not be an issue, however he moves so much and I always wake up with a sore neck or back from having to sleep in positions I did not think were possible. Finally at 11 he falls asleep, on the couch, fine. I position the cushions just in case he rolls off he will not hurt himself! Degan wakes up at 1:30 to pee and somehow wakes up Prestyn, could be that he has to turn on every light from his room to the bathroom. Now 2 of the 3 are awake, well and me. I wake up to sippy cups in my face that are begging to be filled. I trick them and give them water. I figure I may as well change Prestyns diaper, (yes he is going to be 3 and potty training so far has been unsuccessful). We know this is going to be a struggle, but we hope that one day he will wake up and decide he doesn't like a diaper (fingers and toes crossed). 1:45 I'm back in bed trying not to wake Amos who has work the next day. 2:00 we have a visitor in our bed, Prestyn, so instead of pleading with him to go to his bed, I move over and let him join us. We both toss and turn and struggle to get back to sleep. 2:15 Prestyn passes out and I follow, wouldn't you know.... 5 minutes later, Cruz starts waking up. I jump out of bed to get a bottle ready before he lets out his loud cry, and wakes Prestyn! 3:00 Cruz is done eating, diaper changed, burped and now I am wide awake. GREAT! I lay in bed but cannot fall asleep, check my phone it is now 3:30. Well my pop always tells me that if you cannot sleep you should pray the rosary, that will always put you to sleep. I thought I would give it a shot, sure enough I don't know how far I got and I was snoring. 6:30 Prestyn wakes up and is ready to start his day, "momma wake up." He then proceeds to try and open my eyelid and play with my nose, well guess I better get up because soon I know Degan will follow and then Cruz.
On days like this, I think to myself I can take a nap with Cruz in a couple hours and while Prestyn is at school, but then I remember there is laundry to be done, floors to be cleaned and homework that cannot wait. So, I settle for a cup or two of coffee and suck it up!
Amos and I have learned to operate on very little sleep, thank goodness for energy drinks and coffee! I love my boys to death and would not trade them for anything. I am thankful we had them when we did, while energy is still our friend.
8 hours of UNINTERRUPTED sleep............
.............last night my parents kept all 3 boys for the night! Amos and I joked that not even a year and a half ago when my parents would keep Degan and Prestyn we would go grab a couple drinks and hang out with our friends. Well last night we could not get home fast enough and no not because we were eager to get ready for a night on the town, but for our heads to hit the pillow knowing we were going to have a full 8 hours of sleep with no interruptions. It was nice yes, but to be quite honest I missed my Cruzie babies kisses and smiles he offers after his mid-night feeding, and the affection Prestyn shows when he wants to sleep with momma and dadda!
I am in no way complaining, I love my life and my family!
Degan and Prestyn both started sleeping through the night at about 3 months, this was so nice, no middle of the night feedings, no trying to make a bottle half asleep, just straight 8 hours of drool on the pillow and waking up feeling nice and rested.
A couple years passed and it was time to take Prestyn out of his crib. I must say, had he not figured how to jump out he might still be in one! Prior to Cruz being born and being in his new "big boy bed" Prestyn would become increasingly more difficult to put to bed. We could lay him down at 8 and if we were lucky he would be asleep by 11. Then be up throughout the night. Later after doing some research, we found out it is not uncommon for children with autism to have sleep disturbances throughout the night. With the help and advice from other parents with autistic children and some research we were able to get a handle on some of the problem naturally. The solution could not have come at a better time, because Prestyn would be starting school and need to be well rested.
Cruz came along just as we figured out how to get Prestyn to sleep better and have less disturbances at night. Just like any other newborn with the exception of a few he was up eating every three hours. As the months went on this time would slowly increase. We are now up to one feeding at night. Now you cannot look at him and tell me that he HAS to have his night time feeding, however if you are in our home between 2 and 4 when he wakes up you could not tell. He cries as if he is starving and not been feed in days. We even have to wait to burp him until he has guzzled down 6 oz or he gets very angry. And if you try and change his diaper before he has finished his bottle, you have an even angrier baby.
Im not sure I can do the cry it out method, but if I have a night like we did a few nights ago that may be the only option. This was by far one of the worst nights! We typically like for Degan and Prestyn to be in bed lights out at 9, actually falling asleep, well that brings me to this:
Last Tuesday we put them to bed usual time, and we were so exhausted we went to bed at the same time. Before I could even rest my head on my pillow Prestyn comes into the room, the first of many attempts to sneak into bed with us. This would not be an issue, however he moves so much and I always wake up with a sore neck or back from having to sleep in positions I did not think were possible. Finally at 11 he falls asleep, on the couch, fine. I position the cushions just in case he rolls off he will not hurt himself! Degan wakes up at 1:30 to pee and somehow wakes up Prestyn, could be that he has to turn on every light from his room to the bathroom. Now 2 of the 3 are awake, well and me. I wake up to sippy cups in my face that are begging to be filled. I trick them and give them water. I figure I may as well change Prestyns diaper, (yes he is going to be 3 and potty training so far has been unsuccessful). We know this is going to be a struggle, but we hope that one day he will wake up and decide he doesn't like a diaper (fingers and toes crossed). 1:45 I'm back in bed trying not to wake Amos who has work the next day. 2:00 we have a visitor in our bed, Prestyn, so instead of pleading with him to go to his bed, I move over and let him join us. We both toss and turn and struggle to get back to sleep. 2:15 Prestyn passes out and I follow, wouldn't you know.... 5 minutes later, Cruz starts waking up. I jump out of bed to get a bottle ready before he lets out his loud cry, and wakes Prestyn! 3:00 Cruz is done eating, diaper changed, burped and now I am wide awake. GREAT! I lay in bed but cannot fall asleep, check my phone it is now 3:30. Well my pop always tells me that if you cannot sleep you should pray the rosary, that will always put you to sleep. I thought I would give it a shot, sure enough I don't know how far I got and I was snoring. 6:30 Prestyn wakes up and is ready to start his day, "momma wake up." He then proceeds to try and open my eyelid and play with my nose, well guess I better get up because soon I know Degan will follow and then Cruz.
On days like this, I think to myself I can take a nap with Cruz in a couple hours and while Prestyn is at school, but then I remember there is laundry to be done, floors to be cleaned and homework that cannot wait. So, I settle for a cup or two of coffee and suck it up!
Amos and I have learned to operate on very little sleep, thank goodness for energy drinks and coffee! I love my boys to death and would not trade them for anything. I am thankful we had them when we did, while energy is still our friend.
8 hours of UNINTERRUPTED sleep............
.............last night my parents kept all 3 boys for the night! Amos and I joked that not even a year and a half ago when my parents would keep Degan and Prestyn we would go grab a couple drinks and hang out with our friends. Well last night we could not get home fast enough and no not because we were eager to get ready for a night on the town, but for our heads to hit the pillow knowing we were going to have a full 8 hours of sleep with no interruptions. It was nice yes, but to be quite honest I missed my Cruzie babies kisses and smiles he offers after his mid-night feeding, and the affection Prestyn shows when he wants to sleep with momma and dadda!
I am in no way complaining, I love my life and my family!
"oops I made mess"
We had a pretty relaxing thanksgiving holiday this year. It was very nice not having to run all over. It was kind of a bittersweet week. Although we were celebrating how thankful we are for the blessings in our life, cancer took the life of my sister-in-laws dad. Trinidad was an avid runner and completed several marathons. He is now running in the heaven's above. In his last days here on earth, I asked my sister to let him know let him know that the next marathon I run will be in his honor, she told him and he gave her a smile, it will be this smile that will guide me in my training and in the race! Even after he was diagnosed with cancer in January of this year it was his goal to finish another race, now he is racing in the greatest race of all up in heaven.
We spent several days in Belen last week, since I was off work, Prestyn was off of school and Amos had to work some early mornings at his new store minutes from my parents house. Well Saturday night we were all hanging out in the den sitting next to the fire place, chatting and just relaxing. Prestyn was in his room watching his new favorite movie, Word World. I would go in periodically and check on him and he would be playing with blocks or his trucks. Well between the time I checked on him and what would be the next time I went in, he found some baby powder that we thought was out of his reach. This bottle (15oz) was full and the top would not twist to close. Well I walked into the room he meet me at the door holding the powder with his whole body face, hair covered I mean covered in powder. I had this look on my face that I wish I could have captured and all he could say was "oops I made mess." The entire room was doused in baby powder. What used to be black dress shoes of Amos' were now white, the carpet turned from tan to white and the furniture looked like he had not been dusted in months! It was one of those instances where you are so mad but cannot help but laugh. I took Prestyn in the kitchen and had to show everyone how he looked. Everyone but my dad laughed. My mom wanted me to take a picture, however my dad was so scared that he was inhaling the powder demanded I immediately get him in the shower. So being the paranoid mommy that I am I skipped the kodak moment and got him in the shower. We blocked off the room and I took to cleaning it, this took a while and I had to step outside for some fresh air a couple times. Needless to say the room smells very good now! We called poison control just to be on the safe side, because I know I have read somewhere how dangerous it can be for children to inhale baby powder. They reassured us that if a child is exposed to baby powder the best one is the powder made out of cornstarch. We were safe. Lesson learned, we are now in Prestyn proofing mode, but he seems to be one step ahead of us. My mom thinks that we need to get him blessed, because it just seems everything happens to my lil man. I think I am going to take her advice, but rather then sprinkle him in holy water I think he will bathe in holy water.
We spent several days in Belen last week, since I was off work, Prestyn was off of school and Amos had to work some early mornings at his new store minutes from my parents house. Well Saturday night we were all hanging out in the den sitting next to the fire place, chatting and just relaxing. Prestyn was in his room watching his new favorite movie, Word World. I would go in periodically and check on him and he would be playing with blocks or his trucks. Well between the time I checked on him and what would be the next time I went in, he found some baby powder that we thought was out of his reach. This bottle (15oz) was full and the top would not twist to close. Well I walked into the room he meet me at the door holding the powder with his whole body face, hair covered I mean covered in powder. I had this look on my face that I wish I could have captured and all he could say was "oops I made mess." The entire room was doused in baby powder. What used to be black dress shoes of Amos' were now white, the carpet turned from tan to white and the furniture looked like he had not been dusted in months! It was one of those instances where you are so mad but cannot help but laugh. I took Prestyn in the kitchen and had to show everyone how he looked. Everyone but my dad laughed. My mom wanted me to take a picture, however my dad was so scared that he was inhaling the powder demanded I immediately get him in the shower. So being the paranoid mommy that I am I skipped the kodak moment and got him in the shower. We blocked off the room and I took to cleaning it, this took a while and I had to step outside for some fresh air a couple times. Needless to say the room smells very good now! We called poison control just to be on the safe side, because I know I have read somewhere how dangerous it can be for children to inhale baby powder. They reassured us that if a child is exposed to baby powder the best one is the powder made out of cornstarch. We were safe. Lesson learned, we are now in Prestyn proofing mode, but he seems to be one step ahead of us. My mom thinks that we need to get him blessed, because it just seems everything happens to my lil man. I think I am going to take her advice, but rather then sprinkle him in holy water I think he will bathe in holy water.
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