I watch this video when I am feeling over whelmed, lost, confused and ALONE!
It helps to hear it from someone else that you are NOT alone!
Wednesday, November 5, 2014
Most important video to me!
I seen this video and it really touched my heart. It is truly the stages of what you go through when your child is diagnosed. Also how you deal with it. It helped me realize that its ok to go through all the feelings I have and still do go through. Also knowing that I am not the only one out there going through this. There are other mothers/fathers out there that have children like my son, Tyler. I think it is important to try and reach out to parents that are experiencing the same things you are. They understand more then anything. It helps to know you are not alone and to truly know someone that understands you and your journey you are on.
I watch this video when I am feeling over whelmed, lost, confused and ALONE!
It helps to hear it from someone else that you are NOT alone!
I watch this video when I am feeling over whelmed, lost, confused and ALONE!
It helps to hear it from someone else that you are NOT alone!
School has Started!
A week or two before the first day of school....
This is when all of Tyler's anxiety, stress, stomach issues and fear start up again. He was so worried about school. He tells me he hates his school and how no one cares about him there. That breaks my heart. As you have read in the past blog posts, we have been trying to get Tyler an IEP with his school. I am sad to report that it has been so hard to do this. They actually put it off so much last year that it wasn't completed and we had to wait to finish it in the new school year. This was very upsetting for us. We were wanting everything to be done last year so we could have the summer preparing Tyler for the changes in the upcoming school year. Now he has returned to basically the same thing as last year. It doesn't help his anxiety and change his hate for this school. So, the morning anxiety before school has started, I am back to having barf bags in the car for him to throw up in on the way to school, he cries sometimes, begs me not to go, Tells me he has no friends, we have to go over all the safety features the school has so he understands a stranger will NOT come in the school and harm him or the kids, I have to explain to him his teacher is on his side and how we are trying our hardest to make changes to the way he learns and attends school. All that I just explained is something we go through every morning before school. Then there are days he will throw up in school and I have to pick him up. OR he will just be to overwhelmed, stop working, stop paying attention and shut down. Shutting down for Tyler is going non verbal, no eye contact, no participation and just puts his head down for the rest of the day. We have finally had the IEP meeting. It was the longest four hours of my life! We had to hire a child advocate to help us in this meeting and for future meetings. I can say she is an amazing advocate. If there is any parent out there that needs an advocate for the Miami, Broward or West Palm Beach area in South FL please contact me and I will share her information. I don't know where we would be without her!During the IEP meeting we did make some changes and he is getting some help from the ESE teacher, Speech Therapist and a Counselor. They did not do all the evaluations the doctor and I requested. We had to go back for another meeting last week to fight for them to do those evaluations. It has been a roller coaster ride with this school and fighting for Tyler to receive what he deserves for his education. It is very upsetting to go through this process in this way. I am happy they started to help him and I look forward to him getting the full amount of help he should get in school. I will fight for that until he receives it all!
As of now he still has anxiety and gets upset to go to school. He does enjoy going to the ESE teachers room. He tells me she is very nice and not a lot of kids are in that classroom. I just want my son to be happy and enjoy learning. He deserves that as much as any other child or non-autistic child going to school. My heart goes out to all the special needs parents out there that struggle with this school system to get the education their child deserves.
No child should fall through the cracks or be ignored!
Summer Time.... is the Best Time!
It has been a long 3 1/2 months since I have sat down and took the time to type out what has happened in our crazy wonderful chaotic world!
Starting with summer time.
Summer time is a wonderful time in our house. It is the time to sleep in, relax, no school, play video games, play outside, go to the pool, no school, stay up late, vacation time.... did I say NO SCHOOL ? Yes with all the fun we do in the summer time the only thing that truly means so much to Tyler is ~ NO SCHOOL ! It is amazing how much he changes when its summer break. He is more relaxed, he actually has a smile on his face and enjoys his day. I don't see a lot of anxiety, stress or fear. The best thing is there are very few meltdowns. He is just a happy boy playing with his brothers and having fun with no worries. I love seeing him that way. We really enjoyed our summer. We still continued his therapy visits with the psychologist and behavioral therapist. He seems to be learning a lot in behavioral therapy. He has some visits where he really participates and other visits he does not. The therapist is really good at working with him, understanding how far to push him and when to give him space. I like being there also because she does teach me a lot of parenting techniques and ways to change the mistakes I make parenting a child with Autism. It is not an easy thing to do and there is a lot to learn. I feel more confident as a mother now that we have been seeing this therapist. She has also noticed the change in him during summer.
In July we went to SC for my son Brandon's baseball tournament. It took us a month of therapy visits to get Tyler prepared for this trip. She helped him understand he has to go, why he has to go, what we are going for, what he will do there and see there, who will be with us, how we driving there and more. We had to go through the trip for him. Visually showing him pictures and a map that way he could feel as comfortable possible leaving is safe place. He still had anxiety, he still had meltdowns, he still would fight us on almost everything, but then he also had good days/moments too. We know change is very hard for him. This trip was a huge challenge for Tyler. Thankfully I had my parents come to SC and they helped us a lot with Tyler. He didn't have to go everywhere we went because he was able to stay back at the condo with Grandma. That was a huge help. After our return from SC it was almost time for the the new school year to start.
And so it ALL begins again.....
Starting with summer time.
Summer time is a wonderful time in our house. It is the time to sleep in, relax, no school, play video games, play outside, go to the pool, no school, stay up late, vacation time.... did I say NO SCHOOL ? Yes with all the fun we do in the summer time the only thing that truly means so much to Tyler is ~ NO SCHOOL ! It is amazing how much he changes when its summer break. He is more relaxed, he actually has a smile on his face and enjoys his day. I don't see a lot of anxiety, stress or fear. The best thing is there are very few meltdowns. He is just a happy boy playing with his brothers and having fun with no worries. I love seeing him that way. We really enjoyed our summer. We still continued his therapy visits with the psychologist and behavioral therapist. He seems to be learning a lot in behavioral therapy. He has some visits where he really participates and other visits he does not. The therapist is really good at working with him, understanding how far to push him and when to give him space. I like being there also because she does teach me a lot of parenting techniques and ways to change the mistakes I make parenting a child with Autism. It is not an easy thing to do and there is a lot to learn. I feel more confident as a mother now that we have been seeing this therapist. She has also noticed the change in him during summer.
In July we went to SC for my son Brandon's baseball tournament. It took us a month of therapy visits to get Tyler prepared for this trip. She helped him understand he has to go, why he has to go, what we are going for, what he will do there and see there, who will be with us, how we driving there and more. We had to go through the trip for him. Visually showing him pictures and a map that way he could feel as comfortable possible leaving is safe place. He still had anxiety, he still had meltdowns, he still would fight us on almost everything, but then he also had good days/moments too. We know change is very hard for him. This trip was a huge challenge for Tyler. Thankfully I had my parents come to SC and they helped us a lot with Tyler. He didn't have to go everywhere we went because he was able to stay back at the condo with Grandma. That was a huge help. After our return from SC it was almost time for the the new school year to start.
And so it ALL begins again.....
Autism Tattoo
This journey has been something that has touched and changed our family in so many ways, BUT for me it has been an emotional journey. As a parent to a child with Autism, you have to change the way you parent this child. That way they understand you and you understand them. It has been a learning experience for me through Tyler's behavioral therapy. It has also been parenting therapy for me. I have to change the way I approach things, how we discipline, how we praise him for doing good and how we carry a conversation with him because he doesn't understand everything the way we do. It's even harder when you have other children in the house that do not have Autism. Everyday I learn something and I am more confident as I go through our journey.
Getting a tattoo for me is a emotional experience. I get tattoos that have a meaning to me and this means so much.
Getting a tattoo for me is a emotional experience. I get tattoos that have a meaning to me and this means so much.
Happy Mothers Day! 2014
If the wait time for a ride is under 30 minutes they let you go through the express lane. If the wait time for the ride is more then 30 minuets they give you a time on your pass to return. That way Tyler is not waiting in line and his anxiety stays low. It worked out perfect. We tried to get him to ride each ride, but he was very nervous and panic was setting in. My husband and I took turns sitting with him when the other boys went on the rides. His brothers, Brandon and Sean, had a blast! It was fun to enjoy the day with all of them and have fun. Tyler did ride one ride!!!! That was a huge step for him and I was so proud. It was a hard day for him being in such a crowded place with so many sounds and everything going on. I know it was a sensory over load for him. I am truly proud of him for trying as much as he did. :)
School, IEP's, 504 Plans.... oh my!
School is such a challenge for Tyler. It is the one place he feels so alone, afraid, bullied, out of place etc. It kills me how hard it is for him to just wake up every morning and go to school. Most mornings he has a barf bag with him on the way to school just in case he needs to use it because of his nerves. We paid for his comprehensive testing out of pocket to expedite the process of getting him an IEP. IEP ~ Individualized Education Program. An IEP will be a detailed plan of recommendations the doctor says the school should follow to help make it possible for Tyler to learn. At the moment he is just trying to make it through a day of school, one day at a time. There is so much anxiety and panic attacks that he really does not learn much at all. The school has been taking forever to get this going for him. So as they take their time, my child suffers and gets nothing accomplished in school. It is heart breaking. I just want him to like school and feel comfortable going. I thought the charter school he goes to would be ready to help in a timely manner for his benefit, but it has not been that way. I have heard the horror stories from so many parents ~ "Schools will fight you on the IEP"..."it takes forever to get an IEP"..."you might have to hire a lawyer to get the IEP"! Why? Why should it be so hard to help a child in school to learn? Why does Broward county have to have such a lengthy process to just help children who are suffering in school. It is really upsetting. I was thinking this would be a easy process, but now I understand it is not. I will FIGHT for my kid to be able to learn and enjoy school. I will make sure he is comfortable in school like every other child is! The school should understand that. We are Tyler's ADVOCATES and we will make sure Tyler gets what he needs.
Something I Read Everyday!
Aspergers is Autism
Aspergers is a form of Autism... okay say it again ~ Aspergers is a form of Autism.
That is something I had to tell myself over and over again. It was very hard for me to face. My son has Autism. I will be honest, before we really started to get answers from doctors, I never knew much about Autism. I though Autistic children~ don't talk, they are not fully involved with people around them, they stare into space a lot, most of them can't live a normal life etc. Thats what I thought Autism was. I was very wrong! I went to C.A.R.D. to get some help and understanding of Aspergers. When I was there the lady would correct me every time I would say the word "Aspergers"... She would say "Autism". I was kinda frustrated with her because at that point Aspergers and Autism in my mind were two different things. I stopped and asked her why are you doing that! She explained, your son is newly diagnosed and you will come to the understanding that he is Autistic and aspergers is just a form of Autism. On any medical record he will have the diagnosis code for Autism. I was still frustrated and didn't want to believe it at that time. Last week Tyler had an ear infection and I had to take him to the walk in clinic. The doctor asked, "Is there any medical diagnosis or history?". It was the first time I had to say it out loud ...
"He has Autism".
Now that I have a child that had been diagnosed with mild to moderate Autism, I am learning more and more about this so called "Umbrella of diagnosis' of Autism". There are mild, moderate and severe Autistic people in this world. They are all different, but not any less then anyone else. The past two months have been really hard on our family. We are still learning everyday and I know if it is hard for all of us, I can only imagine what is going on in Tyler's mind. He is very depressed mostly because of school. It breaks my heart to have a child so afraid of going to school that he has to have a barf bag on his lap to throw up in before he gets out of the car every morning. He is so uncomfortable in such a big classroom. He can't be around crowds of people. He feels all the kids are staring at him and making fun of his tics. He has many facial and upper body tics caused by his Tourette Syndrome. He tells me the kids make fun of him. I have mention this to the teacher many times and her response is "I never see it happen and I need to see it to do something about it". Really? That is frustrating. Tyler has sensory issues with lights and sound. He gets so nervous about being in the school's lunch room everyday. It is way to loud for him and to many people. It causes him to feel so afraid/nervous to the point he does not eat lunch and sometimes has panic attacks. We have taken Tyler to a doctor to do comprehensive testing for school. This was a very long and detailed testing to find out how Tyler's mind thinks, works and learns. This report was 26 pages long and had recommendations for the school to help Tyler feel safe, comfortable and succeed in school. As of now we are in the process of getting Tyler an IEP (accommodations) for school. It is a long process and very frustrating because my child needs the changes now and he is suffering. We hope the out come is to have Tyler comfortable in the school he is in now, but we don't know if it is possible. We know that it is a big possibility that he will be put into a different school, but before we even think of that, he can't leave this school until he has an IEP in place. So many rules and obstacles to do before anything is better for the child and that is unfair to the child who is suffering through it all.
Tyler is seeing three doctors right now. He has a Neurologist he sees every couple of months for the Tourette Syndrome, a Psychiatrist he sees weekly for medications for his diagnosis' and then he also sees a Behavioral Therapist weekly. He will possibly see an Occupational Therapist on a weekly basis because that was recommended for his sensory issues. Then there is a lot going on in school. We are very busy on a weekly basis. I know all of this is to help Tyler and that makes me very happy, but it seems like so much going on for a 10 year old. I know once we have everything in place at school it will get easier for him. The hardest thing is to see your child suffer and not being able to make things better right at that moment!
The month of April is Autism Awareness Month. Take a moment and understand there are children and adults out there that are on the Autism Spectrum ~ Mild, Moderate and Severe. They are different, but not any less then anyone else. Never judge an adult for their behavior in public or mannerisms. You don't know why they are the way they are. You don't know the struggles they face every day in their mind. When you see a child behaving in a way that makes you want to stare, or think mean thoughts or possible judge that child's parents for the way their child is acting or behaving.... remember that you don't know that child and his/her parents. You don't know the struggles they have everyday. There are good days and bad days in the world of Autism.
That is something I had to tell myself over and over again. It was very hard for me to face. My son has Autism. I will be honest, before we really started to get answers from doctors, I never knew much about Autism. I though Autistic children~ don't talk, they are not fully involved with people around them, they stare into space a lot, most of them can't live a normal life etc. Thats what I thought Autism was. I was very wrong! I went to C.A.R.D. to get some help and understanding of Aspergers. When I was there the lady would correct me every time I would say the word "Aspergers"... She would say "Autism". I was kinda frustrated with her because at that point Aspergers and Autism in my mind were two different things. I stopped and asked her why are you doing that! She explained, your son is newly diagnosed and you will come to the understanding that he is Autistic and aspergers is just a form of Autism. On any medical record he will have the diagnosis code for Autism. I was still frustrated and didn't want to believe it at that time. Last week Tyler had an ear infection and I had to take him to the walk in clinic. The doctor asked, "Is there any medical diagnosis or history?". It was the first time I had to say it out loud ...
"He has Autism".
Now that I have a child that had been diagnosed with mild to moderate Autism, I am learning more and more about this so called "Umbrella of diagnosis' of Autism". There are mild, moderate and severe Autistic people in this world. They are all different, but not any less then anyone else. The past two months have been really hard on our family. We are still learning everyday and I know if it is hard for all of us, I can only imagine what is going on in Tyler's mind. He is very depressed mostly because of school. It breaks my heart to have a child so afraid of going to school that he has to have a barf bag on his lap to throw up in before he gets out of the car every morning. He is so uncomfortable in such a big classroom. He can't be around crowds of people. He feels all the kids are staring at him and making fun of his tics. He has many facial and upper body tics caused by his Tourette Syndrome. He tells me the kids make fun of him. I have mention this to the teacher many times and her response is "I never see it happen and I need to see it to do something about it". Really? That is frustrating. Tyler has sensory issues with lights and sound. He gets so nervous about being in the school's lunch room everyday. It is way to loud for him and to many people. It causes him to feel so afraid/nervous to the point he does not eat lunch and sometimes has panic attacks. We have taken Tyler to a doctor to do comprehensive testing for school. This was a very long and detailed testing to find out how Tyler's mind thinks, works and learns. This report was 26 pages long and had recommendations for the school to help Tyler feel safe, comfortable and succeed in school. As of now we are in the process of getting Tyler an IEP (accommodations) for school. It is a long process and very frustrating because my child needs the changes now and he is suffering. We hope the out come is to have Tyler comfortable in the school he is in now, but we don't know if it is possible. We know that it is a big possibility that he will be put into a different school, but before we even think of that, he can't leave this school until he has an IEP in place. So many rules and obstacles to do before anything is better for the child and that is unfair to the child who is suffering through it all.
Tyler is seeing three doctors right now. He has a Neurologist he sees every couple of months for the Tourette Syndrome, a Psychiatrist he sees weekly for medications for his diagnosis' and then he also sees a Behavioral Therapist weekly. He will possibly see an Occupational Therapist on a weekly basis because that was recommended for his sensory issues. Then there is a lot going on in school. We are very busy on a weekly basis. I know all of this is to help Tyler and that makes me very happy, but it seems like so much going on for a 10 year old. I know once we have everything in place at school it will get easier for him. The hardest thing is to see your child suffer and not being able to make things better right at that moment!
The month of April is Autism Awareness Month. Take a moment and understand there are children and adults out there that are on the Autism Spectrum ~ Mild, Moderate and Severe. They are different, but not any less then anyone else. Never judge an adult for their behavior in public or mannerisms. You don't know why they are the way they are. You don't know the struggles they face every day in their mind. When you see a child behaving in a way that makes you want to stare, or think mean thoughts or possible judge that child's parents for the way their child is acting or behaving.... remember that you don't know that child and his/her parents. You don't know the struggles they have everyday. There are good days and bad days in the world of Autism.
Parenting an Aspergers Child
Parenting is always a hard thing to do and the most rewarding. I love all my boys. I was put on this earth to be a mother to them. As we learn more and more about Aspergers Syndrome (high functioning Autism), we are now understanding that we have to change the way we are as parents to Tyler. We have to change the way we understand him, give him more time to figure things out and discipline him differently. This has been a difficult task for me. I have been a mother for so many years and I am set in my ways of parenting. Then I have doctors telling me I have to change the way I do things with Tyler. This is the hardest thing. In some ways I was feeling like "a bad mom". What was I doing wrong? Are you telling me I am not a good enough parent? It was a difficult thing to get my head around and understand.
I have three other boys that have been fine with the way we do things and they respond well to our discipline. Most of the time its taking video games away, iPod, TV, computer etc. Now a days all kids are hooked on electronics and if you take one of those away... they become well behaved children all of a sudden. When they were younger we also did time out. It worked for my three boys, but not for Tyler. Now looking back that was always a long process with him. He would be put in time out for a few minutes, then I would ask if he was ready to apologize for his misbehavior. Most children would be upset and say sorry, but Tyler would say no and tell me to set the timer again. This would go on for over an hour sometimes. At the time I just thought I have the worlds most stubborn child on my hands! I see now it was the Aspergers side of Tyler. He couldn't fully understand what was going on and he was perfectly content to sit there in time out. Discipline has always been a challenge with Tyler. I can admit I would argue a lot with him. Here I am a grown mother arguing with a child over him misbehaving. It was frustrating and sometimes embarrassing. The behavioral therapist says to be more patient and give him time to process exactly what we want from him at that moment. I have tried this and it does work. Most of the time he calmly comes around and does follow what we want of him. It is time consuming and hard to get use to doing, but it works. It is better then arguing and both of us being stressed out, then having a bad day.
Aspergers children do not show much affection or understand the reason to do so. If Tyler hugs us good night, most of the time its because we have told him to say good night to us. I always get a hug and Dad usually gets a "bro fist" :). I cherish these moments. There are times he will hug me on his own, but it is very rare and I know to cherish the affection he chooses to share at that moment.
Any parent wants the best for their child. We want them to be successful and to fulfill their dreams. This world we live in is hard on a regular basis, but then to have it be more of a challenge for Tyler because of his diagnosis' is hard to face. I want to be the best parent I can for him, to help him become an amazing adult. He is a very smart child. I know we have years ahead of us that will be hard and challenging, but I will try my hardest to parent him in the proper way. I am so thankful for the behavioral therapist and all the doctors we have helping us. This is the first time we truly feel like he is getting the help he needs.
I have three other boys that have been fine with the way we do things and they respond well to our discipline. Most of the time its taking video games away, iPod, TV, computer etc. Now a days all kids are hooked on electronics and if you take one of those away... they become well behaved children all of a sudden. When they were younger we also did time out. It worked for my three boys, but not for Tyler. Now looking back that was always a long process with him. He would be put in time out for a few minutes, then I would ask if he was ready to apologize for his misbehavior. Most children would be upset and say sorry, but Tyler would say no and tell me to set the timer again. This would go on for over an hour sometimes. At the time I just thought I have the worlds most stubborn child on my hands! I see now it was the Aspergers side of Tyler. He couldn't fully understand what was going on and he was perfectly content to sit there in time out. Discipline has always been a challenge with Tyler. I can admit I would argue a lot with him. Here I am a grown mother arguing with a child over him misbehaving. It was frustrating and sometimes embarrassing. The behavioral therapist says to be more patient and give him time to process exactly what we want from him at that moment. I have tried this and it does work. Most of the time he calmly comes around and does follow what we want of him. It is time consuming and hard to get use to doing, but it works. It is better then arguing and both of us being stressed out, then having a bad day.
Aspergers children do not show much affection or understand the reason to do so. If Tyler hugs us good night, most of the time its because we have told him to say good night to us. I always get a hug and Dad usually gets a "bro fist" :). I cherish these moments. There are times he will hug me on his own, but it is very rare and I know to cherish the affection he chooses to share at that moment.
Any parent wants the best for their child. We want them to be successful and to fulfill their dreams. This world we live in is hard on a regular basis, but then to have it be more of a challenge for Tyler because of his diagnosis' is hard to face. I want to be the best parent I can for him, to help him become an amazing adult. He is a very smart child. I know we have years ahead of us that will be hard and challenging, but I will try my hardest to parent him in the proper way. I am so thankful for the behavioral therapist and all the doctors we have helping us. This is the first time we truly feel like he is getting the help he needs.
The younger years.....
Every doctor we meet always ask us the same questions~ What was he like as a baby? Did he have any delay in walking, talking or potty training? How would you describe him? etc.
Tyler was always "Tyler". What I mean by that is he was the child that was different, but not in a bad way. I would always say "thats just Tyler" or "he is set in his way". I never thought there was anything wrong. He was a very colicky baby. He would cry a lot and seemed to never want to give in. I just thought he was a stubborn, stand strong kind of baby. In some ways you would admire your child growing up like that. Then he would only say the word Mama for a long time. His speech was delayed. When we would mention this to the doctors, they would just say, "he will catch up and its nothing to worry about". I did have that thought in the back of my head that my other children did not grow up this way, but they are doctors and know more then me. Now when you look back at things you start to notice the Aspergers side of Tyler. I remember in Pre-K he was told to cut paper anyway he wanted. It was the teachers way of building the muscles in the children's hands for writing. He refused to do it. He asked the teacher why should I cut white paper just to cut it. He refused because he didn't see a purpose to cut. Later on she would draw shapes and he would cut them out. This was a big deal to him. He did not understand why anyone would just cut paper unless there was a task at hand to do... like cutting shapes. He sees things differently and there has to be a reason why for almost everything in his mind. You can see how hard that was for us. Everything was "why" and needed a reason behind it. In kindergarten and first grade he was lucky to have a wonderful teacher that took her time with Tyler. She worked well with him and gave him the space he needed. She use to tell me that Tyler has his good days and bad days. When there was a bad day, she would have him just put his head on the desk and relax. This worked well for Tyler and even though he had some bad days, he was doing very well in school. He is a smart child. In first grade we started to notice Tyler wanting to wear gloves all the time. The glove habit got so bad, we had to fight with him to not wear the gloves to school. I finally took the gloves away for good and he was not happy about it. Even now he wants to wear gloves when he sees them, but we tell him no. Then he started to always have his socks on and this is still going on today. He will sleep in them. I have tried so many ways to make him take the socks off. I even tried to sneak in at night to take them off his feet, but in the morning I would go in to wake him up and he would have socks on again. He would get up in the middle of the night to find a pair of socks. Then it was his jeans. Tyler has to always have jeans on. We live in FL, it gets very hot and he will still wear jeans. He tells us he likes the jeans to cover his legs. He has even refused to swim in the pool because he doesn't like to wear swim shorts. For a while he would sit by the pool, wearing his jeans and watching us swim. He would ask me if he can come in with his jeans, but I said no. Now there are times he will put on swim shorts and go in. When this happens it is a huge accomplishment.
We started to notice the tics around age 7. The pediatrician was the first one to point it out. She recommended Tyler see a Neurologist. The first Nero we did see told us to ignore it. I was a little taken back by her approach to dealing with the tics. We tried to do this, but it was not easy to ignore your child doing things he can not control. We decided to see another Nero. We were told it is a Tic Disorder, it is not very uncommon for children to have and he will grow out of it. We tried to not put Tyler on any medication until the tics started to interfere with his daily life. At first Tyler was very good at hiding the tics. He would make it seem as if he was doing something at the same time as the tics. It worked for a while. Then they got worse. We tried a medication called Clonidine. We honestly did not see any change in the tics, but he did get very angry at times. We decided to stop the medications for a while. We would check in with the Nero from time to time. Tyler's tics were still around and they would change every few months. As a parent seeing your child have these uncontrollable movements that are affecting him and not being able to do a damn thing about it, it is the hardest thing to deal with. Tyler would ask me and his Dad to fix him. It broke our hearts.
After a while we decided we would try another medication. The Nero we were seeing was well recommended, but that was also the problem. It was very hard to get an appointment. We had to make appointments months in advance and even then they would cancel the appointment. We ended up finding a new Nero for Tyler. We finally feel comfortable with this doctor. He takes his time with us and answers all of our questions. He is great with Tyler and Tyler really interacts with him. He started Tyler on Intuniv 2mg at first. After a few months the doctor decided to go up to 3mg. Medication will only help the tics be mild, but they will not go away.
Tyler in the past has had panic attacks. We have been able to find ways to calm him down when it happens. He actually knows when he is starting to have the panic feeling and tells us before it happens. The Psychologist decided to put Tyler on Zoloft 25mg for the panic/anxiety disorder. He has only been taking Zoloft for a week now. We hope it will help him feel more comfortable out of the house and and around people. We are trying to have Tyler understand that we are in the process of making things better and easier for him, but it takes time. We have to do it one day at a time.
Tyler was always "Tyler". What I mean by that is he was the child that was different, but not in a bad way. I would always say "thats just Tyler" or "he is set in his way". I never thought there was anything wrong. He was a very colicky baby. He would cry a lot and seemed to never want to give in. I just thought he was a stubborn, stand strong kind of baby. In some ways you would admire your child growing up like that. Then he would only say the word Mama for a long time. His speech was delayed. When we would mention this to the doctors, they would just say, "he will catch up and its nothing to worry about". I did have that thought in the back of my head that my other children did not grow up this way, but they are doctors and know more then me. Now when you look back at things you start to notice the Aspergers side of Tyler. I remember in Pre-K he was told to cut paper anyway he wanted. It was the teachers way of building the muscles in the children's hands for writing. He refused to do it. He asked the teacher why should I cut white paper just to cut it. He refused because he didn't see a purpose to cut. Later on she would draw shapes and he would cut them out. This was a big deal to him. He did not understand why anyone would just cut paper unless there was a task at hand to do... like cutting shapes. He sees things differently and there has to be a reason why for almost everything in his mind. You can see how hard that was for us. Everything was "why" and needed a reason behind it. In kindergarten and first grade he was lucky to have a wonderful teacher that took her time with Tyler. She worked well with him and gave him the space he needed. She use to tell me that Tyler has his good days and bad days. When there was a bad day, she would have him just put his head on the desk and relax. This worked well for Tyler and even though he had some bad days, he was doing very well in school. He is a smart child. In first grade we started to notice Tyler wanting to wear gloves all the time. The glove habit got so bad, we had to fight with him to not wear the gloves to school. I finally took the gloves away for good and he was not happy about it. Even now he wants to wear gloves when he sees them, but we tell him no. Then he started to always have his socks on and this is still going on today. He will sleep in them. I have tried so many ways to make him take the socks off. I even tried to sneak in at night to take them off his feet, but in the morning I would go in to wake him up and he would have socks on again. He would get up in the middle of the night to find a pair of socks. Then it was his jeans. Tyler has to always have jeans on. We live in FL, it gets very hot and he will still wear jeans. He tells us he likes the jeans to cover his legs. He has even refused to swim in the pool because he doesn't like to wear swim shorts. For a while he would sit by the pool, wearing his jeans and watching us swim. He would ask me if he can come in with his jeans, but I said no. Now there are times he will put on swim shorts and go in. When this happens it is a huge accomplishment.
We started to notice the tics around age 7. The pediatrician was the first one to point it out. She recommended Tyler see a Neurologist. The first Nero we did see told us to ignore it. I was a little taken back by her approach to dealing with the tics. We tried to do this, but it was not easy to ignore your child doing things he can not control. We decided to see another Nero. We were told it is a Tic Disorder, it is not very uncommon for children to have and he will grow out of it. We tried to not put Tyler on any medication until the tics started to interfere with his daily life. At first Tyler was very good at hiding the tics. He would make it seem as if he was doing something at the same time as the tics. It worked for a while. Then they got worse. We tried a medication called Clonidine. We honestly did not see any change in the tics, but he did get very angry at times. We decided to stop the medications for a while. We would check in with the Nero from time to time. Tyler's tics were still around and they would change every few months. As a parent seeing your child have these uncontrollable movements that are affecting him and not being able to do a damn thing about it, it is the hardest thing to deal with. Tyler would ask me and his Dad to fix him. It broke our hearts.
After a while we decided we would try another medication. The Nero we were seeing was well recommended, but that was also the problem. It was very hard to get an appointment. We had to make appointments months in advance and even then they would cancel the appointment. We ended up finding a new Nero for Tyler. We finally feel comfortable with this doctor. He takes his time with us and answers all of our questions. He is great with Tyler and Tyler really interacts with him. He started Tyler on Intuniv 2mg at first. After a few months the doctor decided to go up to 3mg. Medication will only help the tics be mild, but they will not go away.
Tyler in the past has had panic attacks. We have been able to find ways to calm him down when it happens. He actually knows when he is starting to have the panic feeling and tells us before it happens. The Psychologist decided to put Tyler on Zoloft 25mg for the panic/anxiety disorder. He has only been taking Zoloft for a week now. We hope it will help him feel more comfortable out of the house and and around people. We are trying to have Tyler understand that we are in the process of making things better and easier for him, but it takes time. We have to do it one day at a time.
Introduction
To begin this intro on my blog I will start with the reasoning behind it. Our ten year old son Tyler was diagnosed with Aspergers Syndrome recently. He was also diagnosed with Tourette's Syndrome, OCD, Anxiety Disorder and Panic Disorder with Agoraphobia. I know... the list is long and hard to accept. We kind of knew by now he would be diagnosed with Tourettes and had OCD. We have seen the tics for a few years now and the OCD is apparent in his actions. Then hearing the Neurologist say, "Tyler should see a Psychologist to evaluate him for a Aspergers Syndrome diagnosis", all of a sudden I was afraid for my child more then anything. My husband and I didn't know much about Aspergers Syndrome. Just like any parent.. we ran home, got the computer out and then started to Google. The more we read, the more we started to think these websites are describing our son. We had so many mix emotions.
We had the evaluation done and he was diagnosed.
It's hard to put into words the feelings and emotions as a parent. After so many years of wondering what is it that makes Tyler... well " Tyler " and we now have an answer! I can't speak for my husband, but for me it was a lot to take in. I was relieved we have answers and a plan to go forward to make his life easier and to help him understand how he has been feeling. Then you feel sad and wonder why my child. I feel guilty, I start to think back through the years when it was hard to get through to him or have him understand me. I would get so frustrated with him, he would get frustrated with us and this whole time he truly couldn't help it. The more I research the better I feel about having an answer. It's more of an understanding of my child and the the way his mind works. The internet can be over whelming with so much information. We are taking this one day at a time. He is now scheduled for Behavioral Therapy, will continue seeing the Neurologist and psychiatrist. He is on two medications also. We are in the process of getting him more help in school, but it has been a challenge. Schools really want you to jump through fire to get help for your child. I will advocate for my child and will never stop until he is happy and doing well in school. They will get use to my phone calls, e mails and face before this school year ends.
I am writing this blog to tell our story and to show support to other parents going through the same things. Please feel free to leave comments or reach out to me if you need to. It is nice to have support from a parent that is going through the Aspergers Journey to.
We had the evaluation done and he was diagnosed.
It's hard to put into words the feelings and emotions as a parent. After so many years of wondering what is it that makes Tyler... well " Tyler " and we now have an answer! I can't speak for my husband, but for me it was a lot to take in. I was relieved we have answers and a plan to go forward to make his life easier and to help him understand how he has been feeling. Then you feel sad and wonder why my child. I feel guilty, I start to think back through the years when it was hard to get through to him or have him understand me. I would get so frustrated with him, he would get frustrated with us and this whole time he truly couldn't help it. The more I research the better I feel about having an answer. It's more of an understanding of my child and the the way his mind works. The internet can be over whelming with so much information. We are taking this one day at a time. He is now scheduled for Behavioral Therapy, will continue seeing the Neurologist and psychiatrist. He is on two medications also. We are in the process of getting him more help in school, but it has been a challenge. Schools really want you to jump through fire to get help for your child. I will advocate for my child and will never stop until he is happy and doing well in school. They will get use to my phone calls, e mails and face before this school year ends.
I am writing this blog to tell our story and to show support to other parents going through the same things. Please feel free to leave comments or reach out to me if you need to. It is nice to have support from a parent that is going through the Aspergers Journey to.
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