Hi Everybody, Sorry about the long lapse in posts. We have been so busy these past few weeks. Cory and I decided that we are going to send Joey to Kindergarten in the Fall; he will go to Northview Elementary and will be in the Autism classroom. It is an all day program Monday-Friday. He will be in a special classroom with others on the spectrum in grades k-2. Northview is a wonderful school and as scary as it is to think about Joey going to Kindergarten I think that it will be the best thing for him.
We had our meeting Oon Monday the 8th of March with Social Services, this was the first of many steps to get the ball rolling to get funding for Joey to get a Personal Care Attendant (PCA). All of the paperwork is done which was the biggest step now we just wait.....
We have decided to postpone the Fraser Skills Training for now, Joey was not doing well with all of the changes that were happening there. With the new clinic that just opened in Bloomington and then with them switching us to a new trainer it was all just to overwhelming. We are still doing the Occupational Therapy (OT) at Children's Therapy Center, they are wonderful there and Joey is doing great so far.
Molly started her dome softball last Sunday, things only get busier from here on out with her ball. Cory and I took turns on Sunday at her games; Cory went to the first game and I stayed home with the boys then Cory came home to sit with the boys and Abby and I went to the second game. I hope that eventually we will all be able to go to the games together but right now it is just to much for Joey to take in. David continues to be a big handful, I only pray that when he turns 3 on May 9th that the terrible twos are left behind;-)
That's all for now!!!
Wednesday, March 10, 2010
Sunday, February 21, 2010
Here We Go Again........
We had a very busy week last week; Joey was home from school all week so it was rather exhausting having all three kids: Joey 4 1/2, David almost 3 and Abby 3 months) home with me all day. We did not leave the house except to run necessary errands and Joey did very well.
Last Wednesday at our skills training at Fraser we found out that Joey will be seeing a new skills trainer; the new Fraser Clinic in Bloomington opens on March 1st and they set us up with someone that was supposed to be transfering to Bloomington; however the girl that we see now is switching to part time hours so they are keeping her in Minneapolis. This was very frustrating news to me; it took Joey 4 weeks to get used to the person that we see and now he is going to have to get used to a new person. I have not noticed much of an improvement thus far from the skills training so hopefully we will see some soon.
Joey starts his Occupational Therapy (OT) tomorrow morning at The Childrens Therapy Center and he also goes back to school tomorrow after having 12 days off; it could be an interesting and very stressful day;-)
We have decided that this Summer we are going to do riding horse therapy with Joey. Riding therapy strengthens leg and trunk muscles; increases balance and coordination; helps riders to focus; develops social skills; builds a sense of self-esteem, trust, and belonging; and can even overcome sensory issues. Majestic Hills in located in Lakeville so it's close to home. Joey will do the riding once a week. I think this is going to be very beneficial to our little man.
The Ten Commandments for Parents of Handicapped Children
1. Take one day at a time, and take that day positively. You don't have control over the future, over today, or over any other day, and neither does anyone else. Other people just think they do.
2. Never underestimate your child's potential. Allow him, encourage him, and expect him to develop to the best of his abilities.
3. Find and allow positive mentors: parents and professionals who can share with you their experience, advice, and support.
4. Provide and be involved with the most appropriate educational and learning environments for your child from infancy on.
5. Keep in mind the feelings and needs of your spouse and your other children. Remind them that this child does not get more of your love just because he gets more of your time.
6. Answer only to your conscience: then you'll be able to answer to your child. You need not justify your actions to your friends or the public.
7. Be honest with your feelings. You can't be a super-parent 24 hours a day. Allow yourself jealousy, anger, pity, frustration, and depression in small amounts whenever necessary.
8. Be kind to yourself. Don't focus continually on what needs to be done. Remember to look at what you have accomplished.
9. Stop and smell the roses. Take advantage of the fact that you have gained a special appreciation for the little miracles in life that others take for granted.
10. Keep and use a sense of humor. Cracking up with laughter can keep you from cracking up from stress.
11. There is no 11th, silly. (See the 10th).
Last Wednesday at our skills training at Fraser we found out that Joey will be seeing a new skills trainer; the new Fraser Clinic in Bloomington opens on March 1st and they set us up with someone that was supposed to be transfering to Bloomington; however the girl that we see now is switching to part time hours so they are keeping her in Minneapolis. This was very frustrating news to me; it took Joey 4 weeks to get used to the person that we see and now he is going to have to get used to a new person. I have not noticed much of an improvement thus far from the skills training so hopefully we will see some soon.
Joey starts his Occupational Therapy (OT) tomorrow morning at The Childrens Therapy Center and he also goes back to school tomorrow after having 12 days off; it could be an interesting and very stressful day;-)
We have decided that this Summer we are going to do riding horse therapy with Joey. Riding therapy strengthens leg and trunk muscles; increases balance and coordination; helps riders to focus; develops social skills; builds a sense of self-esteem, trust, and belonging; and can even overcome sensory issues. Majestic Hills in located in Lakeville so it's close to home. Joey will do the riding once a week. I think this is going to be very beneficial to our little man.
The Ten Commandments for Parents of Handicapped Children
1. Take one day at a time, and take that day positively. You don't have control over the future, over today, or over any other day, and neither does anyone else. Other people just think they do.
2. Never underestimate your child's potential. Allow him, encourage him, and expect him to develop to the best of his abilities.
3. Find and allow positive mentors: parents and professionals who can share with you their experience, advice, and support.
4. Provide and be involved with the most appropriate educational and learning environments for your child from infancy on.
5. Keep in mind the feelings and needs of your spouse and your other children. Remind them that this child does not get more of your love just because he gets more of your time.
6. Answer only to your conscience: then you'll be able to answer to your child. You need not justify your actions to your friends or the public.
7. Be honest with your feelings. You can't be a super-parent 24 hours a day. Allow yourself jealousy, anger, pity, frustration, and depression in small amounts whenever necessary.
8. Be kind to yourself. Don't focus continually on what needs to be done. Remember to look at what you have accomplished.
9. Stop and smell the roses. Take advantage of the fact that you have gained a special appreciation for the little miracles in life that others take for granted.
10. Keep and use a sense of humor. Cracking up with laughter can keep you from cracking up from stress.
11. There is no 11th, silly. (See the 10th).
Friday, February 12, 2010
Life as we know it!
It has been another challenging week with Joey; I am learning as I go that there seems to be more challenging days than non challenging ones. On Wednesday of this week at Joey's skills training at Fraser Joey did not cooperate very well; there was a student in observing our session and that completely threw Joey off; he did a lot of hand flapping, covering his eyes and over all just wanted to "get out of there" as he says often when he doesn't want to do something.
We had Joey's school conferences on Wednesday; Joey is doing well, he has started to play side by side with other kids in the classroom; where as two months ago he would not even do that. He loves circle time and also playing in the motor gym. We are actually considering kindergarten for Joey next year in The Communication Interaction Program (CIP)which is a center-based program for students with special needs, primarily providing services for students with autism spectrum disorder in grades K-12. The CIP program provides a small classroom environment along with access to the mainstream classroom. Students in the program receive individualized academic and social skills instruction, as well as support in speech and language, adapted physical education, and occupational therapy. Joey turns 5 on August 1st so he could stay in the pre-school Autism program again next year which is only 3 1/2 hours versus the kindergarten classroom which is all day; we are leaning towards kindergarten even though it is scary to even think about it at this point.
Joey will go to school all Summer through August and hopefully that will help to better prepare him for what is coming next. Developmentally Joey is at a 2 year age level so we all know that we have a long road in front of us with lots and lots of hard work.
HBO had a movie about Temple Grandin on last Saturday night; if you don't know much about her I suggest you take a look at her website: http://templegrandin.com/. Temple has Autism and through all of the challenges that she has faced she has a Ph. D and is a Proffesor of Animal Science at Colorado State University-Fort Collins. She is truly an inspiration.
I will leave you with one thought:
"Many autistics are told that they are broken, diseased, and dysfunctional. This is simply untrue. My wish for all autistics is that they will realize their self-worth and not believe the myth that they are someone that needs fixing."
I love you my Jo-Jo man!!!
We had Joey's school conferences on Wednesday; Joey is doing well, he has started to play side by side with other kids in the classroom; where as two months ago he would not even do that. He loves circle time and also playing in the motor gym. We are actually considering kindergarten for Joey next year in The Communication Interaction Program (CIP)which is a center-based program for students with special needs, primarily providing services for students with autism spectrum disorder in grades K-12. The CIP program provides a small classroom environment along with access to the mainstream classroom. Students in the program receive individualized academic and social skills instruction, as well as support in speech and language, adapted physical education, and occupational therapy. Joey turns 5 on August 1st so he could stay in the pre-school Autism program again next year which is only 3 1/2 hours versus the kindergarten classroom which is all day; we are leaning towards kindergarten even though it is scary to even think about it at this point.
Joey will go to school all Summer through August and hopefully that will help to better prepare him for what is coming next. Developmentally Joey is at a 2 year age level so we all know that we have a long road in front of us with lots and lots of hard work.
HBO had a movie about Temple Grandin on last Saturday night; if you don't know much about her I suggest you take a look at her website: http://templegrandin.com/. Temple has Autism and through all of the challenges that she has faced she has a Ph. D and is a Proffesor of Animal Science at Colorado State University-Fort Collins. She is truly an inspiration.
I will leave you with one thought:
"Many autistics are told that they are broken, diseased, and dysfunctional. This is simply untrue. My wish for all autistics is that they will realize their self-worth and not believe the myth that they are someone that needs fixing."
I love you my Jo-Jo man!!!
Friday, February 5, 2010
What a week!!!
This week started out going well, Joey went to school Monday, Tuesday and Wednesday.
To make a long story short Joey had been having some problems with his teeth, on New Years Eve we went to the Pediatric Dentist at Metro Dental and Joey had a tooth that was so infected they had to extract it; in order to do this they gave Joey laughing gas and also put him in something like a straightjacket. It was a terrible experience for him and myself. We went to the U of M Dental Clinic in early January and they said that in order to do all of the dental work that Joey needed done they would have to do so in the Operating Room (OR). They put us on a cancellation list and ended up calling on Wednesday February 3rd saying that they had an appointment open the next day the 4th of February; I took the appointment and had him in on Wednesday for his pre-op physical. We were told to be at the U yeterday at 8:00 AM and surgery would start at 10:00 AM; they ended up not getting started until 11:03 AM. I was able to go with him back to the OR until he was put under, I was very happy to be able to do this but it was also heartbreaking seeing the look of total fear in Joey's eyes; I tried to explain to him what was happening but he just did not understand. He was in the OR for 2 hours; they ended up doing 5 crowns, 4 fillings and a cleaning. Most of the doctors and nurses were wonderful. The doctor came out to get me when Joey was just waking up in recovery and I could hear him screaming from way down the hall. When I walked in the room there were two nurses trying to get Joey to stay in the bed and not pull his IV out; which he was trying very hard to do. He was in reovery for almost two hours. We left the hospital at around 3:00 PM. Joey did pretty well last night; he slept through the night and woke up this morning doing okay. It was a long day yesterday and I am so glad that it is over; I only pray that we never have to go through that again.
I would like to thank my wonderful Mom and Sister for being there to support Joey and I and also for watching Abby and David.
Joey is so lucky to have so many people that love and support him. He is an amazing little guy.
To make a long story short Joey had been having some problems with his teeth, on New Years Eve we went to the Pediatric Dentist at Metro Dental and Joey had a tooth that was so infected they had to extract it; in order to do this they gave Joey laughing gas and also put him in something like a straightjacket. It was a terrible experience for him and myself. We went to the U of M Dental Clinic in early January and they said that in order to do all of the dental work that Joey needed done they would have to do so in the Operating Room (OR). They put us on a cancellation list and ended up calling on Wednesday February 3rd saying that they had an appointment open the next day the 4th of February; I took the appointment and had him in on Wednesday for his pre-op physical. We were told to be at the U yeterday at 8:00 AM and surgery would start at 10:00 AM; they ended up not getting started until 11:03 AM. I was able to go with him back to the OR until he was put under, I was very happy to be able to do this but it was also heartbreaking seeing the look of total fear in Joey's eyes; I tried to explain to him what was happening but he just did not understand. He was in the OR for 2 hours; they ended up doing 5 crowns, 4 fillings and a cleaning. Most of the doctors and nurses were wonderful. The doctor came out to get me when Joey was just waking up in recovery and I could hear him screaming from way down the hall. When I walked in the room there were two nurses trying to get Joey to stay in the bed and not pull his IV out; which he was trying very hard to do. He was in reovery for almost two hours. We left the hospital at around 3:00 PM. Joey did pretty well last night; he slept through the night and woke up this morning doing okay. It was a long day yesterday and I am so glad that it is over; I only pray that we never have to go through that again.
I would like to thank my wonderful Mom and Sister for being there to support Joey and I and also for watching Abby and David.
Joey is so lucky to have so many people that love and support him. He is an amazing little guy.
Monday, February 1, 2010
Joey had a fairly good weekend. On Saturday we went to Molly's basketball game and then to McDonalds afterwards; for the first time ever Joey climbed in the tubes he got nervous a few times but overall did really well, that is something he would not do 2 months ago.
Joey's teachers came out last Thursday evening for a home visit; we were able to discuss Joey's progress in school and also different things we can be doing at home to help him out.
We have our second skills training on Wednesday. Joey will also start Occupational Therapy (OT) at the Childrens Therapy Center in Eagan on February 22, I was so happy they were able to get us in so soon.
Cory and I are also in the process if getting a Personal Care Attendant (PCA) for Joey, this is someone that will come to our home in the mornings before school and evenings to help us care for Joey; this will be very nice for Cory and I since Joey needs constant one on one supervision.
This Saturday at the Ridgedale Mall Cory and I are going to take the kids to see The Tooth Fairy; they have Sensory Friendly films whenever a new kids movie comes out for kids with Autism; I am so excited. Joey loves going to movies but we usually have to leave shortly after they start because he gets so excited, we don't have to worry about that here;-)
Other than that we are staying busy and taking every day as it comes!
Joey's teachers came out last Thursday evening for a home visit; we were able to discuss Joey's progress in school and also different things we can be doing at home to help him out.
We have our second skills training on Wednesday. Joey will also start Occupational Therapy (OT) at the Childrens Therapy Center in Eagan on February 22, I was so happy they were able to get us in so soon.
Cory and I are also in the process if getting a Personal Care Attendant (PCA) for Joey, this is someone that will come to our home in the mornings before school and evenings to help us care for Joey; this will be very nice for Cory and I since Joey needs constant one on one supervision.
This Saturday at the Ridgedale Mall Cory and I are going to take the kids to see The Tooth Fairy; they have Sensory Friendly films whenever a new kids movie comes out for kids with Autism; I am so excited. Joey loves going to movies but we usually have to leave shortly after they start because he gets so excited, we don't have to worry about that here;-)
Other than that we are staying busy and taking every day as it comes!
Wednesday, January 27, 2010
Our long Journey has just begun!!!
Today was the start of our very first skills training session. The specialist Lisa and I did a lot of talking today and going over what goals Joey will work on. I realized while in the room going over all of the skills that Joey does not have what a long journey we have ahead of us; my only hope is that Joey gains some basic skills that will help him to live a long prosperious life. He is such an amazing little man and such a joy to the whole family.
I finally got Joey to go to bed last night at 11:00 PM and he woke up when I did at 6:3o AM; some nights it's much more difficult to get him to calm down and go to bed than other nights. He went to school today and had a great day and fell asleep on the bus; which I knew he would. He woke up right when I carried him in the house and is bouncing around like he usually does, he can't sit still for long.
My song to Joey is "I'll stand by you" by The Pretenders. Whenever I sing it to him he smiles; it is probably because I have a horrible singing voice but I still love the smile I get so it's worth it;-)
I am so excited for what the future has in store for Joey and our family.
Life is good!!!
http://www.youtube.com/watch?v=maAyfcO-X3k
I finally got Joey to go to bed last night at 11:00 PM and he woke up when I did at 6:3o AM; some nights it's much more difficult to get him to calm down and go to bed than other nights. He went to school today and had a great day and fell asleep on the bus; which I knew he would. He woke up right when I carried him in the house and is bouncing around like he usually does, he can't sit still for long.
My song to Joey is "I'll stand by you" by The Pretenders. Whenever I sing it to him he smiles; it is probably because I have a horrible singing voice but I still love the smile I get so it's worth it;-)
I am so excited for what the future has in store for Joey and our family.
Life is good!!!
http://www.youtube.com/watch?v=maAyfcO-X3k
Monday, January 25, 2010
Monday-Need I say More????
Joey had a pretty good weekend, even if the Viking's blew there chance to go to the Super Bowl!
We have been trying to work hard on doing flashcards dealing with letters and numbers and he has been working so hard. So far he just has the color green down, actually whenever we ask him what color something is he says "green".
Joey's teacher said that he had a good day and had a great time playing with the toy kitchen pretending to cook. Some Monday's are very hard for him but it sounds like this was an easier one for him.
Joey's school has borrowed us a weighted blanket to try and so far it has been working great.
A lack of adequate restful sleep leads to behavioral problems and learning difficulties.
A weighted blanket is used for a variety of different reasons, most commonly the blankets are used to give sensory input to those on the autism spectrum. Joey has sensory issues which require stimulation and boundaries so he is more aware of his body. Persons with autism and other sensory disorders can experience other levels of distress by an inability to identify or filter input from their senses; not being able to ignore the hum of a computer or the noise of a washing machine a weighted blanket will provide a strong sensory impact that allows them to focus and not seek out sensory input from unsafe behaviors.
My Mom and I are going to a seminar tomorrow night at Fraser Center the topic is; A Parent's Guide to Intensive Behavioral Interventions for Autism. They will discuss what the best intervention might be for your child and how to obtain the services that are needed at school, home, etc. I am really looking forward to this.
We start our skills training on Wednesday. Finally.
I bought Joey this button over the weekend so he can show it to people when they are busy giving him dirty looks;-) I love it!
That's all for now!!
Thursday, January 21, 2010
What a week
This week has been one of the most challenging weeks since finding out that Joey has Autism. He had a really bad day yesterday; his teacher at school said that he had lots of tears and didn't want to do the things that he normally loves to do. He is such a restless sleeper and that seems to be getting worse, I don't even know how I can function normally with such little sleep; wait maybe I can't;-) Between Joey and Abby who is 10 weeks old sleep is a missed privelage of mine.
Fraser had to cancel our skills training on Wednesday which was a big dissapointment to me; they were able to reschedule us to start on Wednesday the 27th. I am really looking forward to seeing what this can do for Joey and our family.
We continue to move one step forward and two steps back. All I can think is that things can only get better; can't they???
Fraser had to cancel our skills training on Wednesday which was a big dissapointment to me; they were able to reschedule us to start on Wednesday the 27th. I am really looking forward to seeing what this can do for Joey and our family.
We continue to move one step forward and two steps back. All I can think is that things can only get better; can't they???
Monday, January 18, 2010
We had a fairly good weekend. On Saturday Joey actually wanted to go outside and have a snowball fight; I put his snowsuit and boots on him and he ripped them off right away. He can't stand the feeling of having such heavy clothing on. He wanted to go out so badly just without his snowsuit on so I dressed him warm and we went outside and stayed out for an hour. Joey had so much fun shoveling the snow and throwing the snow at David and I. I had to bribe him to come inside by telling him that we would bake a cake; which we did.
I am very much looking forward to starting our skills training Wednesday at Fraser Center; I think that is going to help Joey out so much.
Joey goes back to school tomorrow; hopefully it won't be to much of a struggle. It's always harder for him to go back after a long weekend.
That's all for now.
I am very much looking forward to starting our skills training Wednesday at Fraser Center; I think that is going to help Joey out so much.
Joey goes back to school tomorrow; hopefully it won't be to much of a struggle. It's always harder for him to go back after a long weekend.
That's all for now.
Friday, January 15, 2010
Fun Friday!!!
Today was a good Friday compared to some. Grandpa and Uncle Steve came down this morning to get Joey on the bus for school. He seems to do better when Grandpa or Dad take hime out to the bus; for some reason when I take him out he kicks and screams and tries to run back in the house. Maybe he just wants to stay home with me;-)
Some Friday's Joey cooks at school and he takes great pride in his cooking skills.
They were going to try and take Joey outside this week to play in the snow but didn't make it out so they will try again next week and hope for the best.
I received a call this morning from the Fraser Center and they were able to get Joey in to start his skills training next Wednesday the 20th; this is fantastic news. We thought that we would have to wait a few months to get started so this was welcome news.
Do to this blog and facebook I have had many wonderful comments from friends with very encouraging words for myself and my family; thank-you to all of you for that.
Grandma is going to come over tomorrow and make a cake with Joey; we are all looking forward to this.
It has been somewhat of a difficult week but I am very anxious for what the future holds for my little man.
I love you buddy!!!!
Some Friday's Joey cooks at school and he takes great pride in his cooking skills.
They were going to try and take Joey outside this week to play in the snow but didn't make it out so they will try again next week and hope for the best.
I received a call this morning from the Fraser Center and they were able to get Joey in to start his skills training next Wednesday the 20th; this is fantastic news. We thought that we would have to wait a few months to get started so this was welcome news.
Do to this blog and facebook I have had many wonderful comments from friends with very encouraging words for myself and my family; thank-you to all of you for that.
Grandma is going to come over tomorrow and make a cake with Joey; we are all looking forward to this.
It has been somewhat of a difficult week but I am very anxious for what the future holds for my little man.
I love you buddy!!!!
Wednesday, January 13, 2010
Joey had a great Tuesday and Wednesday at school. Yesterday Joey's teachers brought some snow into the sensory table in the classroom and Joey loved manking snowball's and throwing them at the teacher and his classmates; this was very exciting news considering that he usually will not touch snow. He was very excited and said "snowball fight".
Joey has mastered the color green; anytime we ask him what color something is he says "it's green". Hey we are making progress. He has also mastered the numbers 1 and 2; he says 1, 2, 7, 9 and gets very excited each time. We are just so pleased with the progress he is making even if it is 1 step forward and 2 steps back which is the way it seems to go for us.
Cory and I are in the process of looking at support groups for parents of autistic children and so far I haven't had much luck. You would think with the growing number of kids with autism there would be more support available. Cory and I would like to meet couples that also have autistic children; other people that can relate to our situation and not be afraid to hang out with us; it can be scary at times:-)
Joey has mastered the color green; anytime we ask him what color something is he says "it's green". Hey we are making progress. He has also mastered the numbers 1 and 2; he says 1, 2, 7, 9 and gets very excited each time. We are just so pleased with the progress he is making even if it is 1 step forward and 2 steps back which is the way it seems to go for us.
Cory and I are in the process of looking at support groups for parents of autistic children and so far I haven't had much luck. You would think with the growing number of kids with autism there would be more support available. Cory and I would like to meet couples that also have autistic children; other people that can relate to our situation and not be afraid to hang out with us; it can be scary at times:-)
Monday, January 11, 2010
The Monday Morning Blues!!!
Monday's are always crazy in the Cliff household. Just when Joey is getting used to our weekend routine Monday comes around and screws it all up;-)
We use something called the Visual Exchange Communication System (PECS) for Joey; this allows him to look at pictures of what his daily schedule looks like instead of just hearing us tell him; they also use the PECS in school for Joey and this seems to really work for him.
We have many exciting things coming up for Joey. He is going to start Skills training at the Fraser Center in Minneapolis; skills training will provide age-appropriate daily-living skills ,increase his adaptive functioning at home,strengthen interpersonal and family relationships, andincrease our understanding of his development. He will also do the feeding clinic at Fraser; Joey does not eat much do to his sensory integration he has a very hard time with any kind of texture and that makes it very difficult to eat what he should be. The feeding clinic will provide; comprehensive multidisciplinary evaluations with a psychologist, speech-language pathologist, and an occupational therapist. The feeding therapy program is based on the S.O.S (Sequential Oral Sensory) approach. This is all very exciting and we hope to start soon.
Cory and I are also looking into getting a portable hyperbaric chamber to rent monthly; the chamber is supposed to help lessen the affects of Autism. HBOT is an abbreviation for hyperbaric oxygen therapy. Hyperbaric oxygen therapy is a medical treatment which enhances the body’s natural healing process by delivering oxygen under pressure, increasing the oxygen content in the blood and in the cerebral spinal fluid, flooding the tissues with oxygen. It is thought that children with Autism have less oxygen flow to the brain. We are hoping that the chamber will help with the hand flapping, sleep insomnia and the total meltdowns that happen anytime there is a deviation in his schedule.
It seems as though lately Joey's symptoms are increasing, it is so hard being out in public and getting dirty looks from total strangers because Joey is on the floor having a total meltdown, or screaming that he wants to "get out of here". He has also started to wander away from us, if we take our eyes off of him for a second he will take off. My running skills have increased; that is one way to get my daily exercise in;-)
That's all I have for today; Joey's bus gets here at 3:04. I hope he had a good day, seeing him smile when he gets off of the bus makes it all worth while!!!
Sunday, January 10, 2010
Diagnoses, Treatments and Appointments Galore!!!
Joey is in the Autism classroom through the district 5 days a week 5 hours a day. He has an amazing group of teachers that love him dearly.
Cory and I have done so much research on what treatments work from diets to stem cell treatments to hyperbaric chambers. Just like no two autistic children are the same no two treatment options work the same. It is all trial and error at this point.
Everyday brings a new set of challenges and a new obstacle that I never thought that I would encounter.
I decided recently that instead of crying myself to sleep thinking about all of the things that could have been I am going to focus on the gift that god has given to us and that gift is Joey.
Cory and I have done so much research on what treatments work from diets to stem cell treatments to hyperbaric chambers. Just like no two autistic children are the same no two treatment options work the same. It is all trial and error at this point.
Everyday brings a new set of challenges and a new obstacle that I never thought that I would encounter.
I decided recently that instead of crying myself to sleep thinking about all of the things that could have been I am going to focus on the gift that god has given to us and that gift is Joey.
Agreat poem about Autism
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It’s just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills.... and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very, very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It’s just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills.... and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very, very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.
From the second Joey came into this world he was loved by so many people. There was finally a boy in the family.Joey got meningitis at 3 weeks of age and we thought we might lose him; he is a tough guy and pulled through with a moderate hearing loss.
Joey wears hearing aids and seemed to be doing great until this past Summer. Joey was attending the district 196 deaf and hard of hearing classes. Over the summer right before Joey turned 4 he started to regress; losing skills that he had, stopped making eye contact and became almost like a different child. I thought maybe because I was having another baby and that was his way of acting out; boy was I wrong.
I went in for conferences in June of 2009 with all of Joey's teachers sitting at a table; I was 6 months pregnant and by myself at the conference. Cory was at home with Joey and David.
The first words that came out of Joey's teachers mouth was " Carly we are really worried about Joey" I thought hhmmmm and wanted to start crying at that point but thought that I would wait until she told me why she was worried; deep down inside I knew what she was going to say. Yep! I was right she said "Carly we are worried that Joey might be autistic and would like your permission to do the appropriate testing. In between sobs I said of course. That was one day throughout this journey that I will never forget. The other day that I will never forget is July 29, 2009 when we had the meeting after all of the testing that took place over the summer and the autism diagnoses was confirmed.
I thought to myself this can't be so bad; there isn't anything that I can't handle. Boy was I wrong....
Joey's story in a nutshell
From the second we found out we were expecting a baby Cory and I were exstatic; we couldn't wait to find out if we were having a boy or a girl. We found out in Marh of 2006 that we were having a boy and we couldn't have been happier; little did we know then the journey that awaited us.
I don't know how many times I have said " I didn't sign up for this". I have now gotten over that and decided that blogging about our journey through autism would be theraputic for me and a way for family and friends to know where we are at in our special journey.
I don't know how many times I have said " I didn't sign up for this". I have now gotten over that and decided that blogging about our journey through autism would be theraputic for me and a way for family and friends to know where we are at in our special journey.
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