So, after a few months of realization and research, that cultivated in the IA City evaluation that reiterated what we have thought for some time now...I am now on the road to "acceptance." Just like when you lose someone close to you, parents of children that are diagnosed with a disability go through the stages of grief and hopefully they all come to the final stage of "acceptance." I am slowly getting there, though there are some rough days where I still wonder why and how...but those days are very few now!
Mike and I have talked many times about what we expect from Brycen over the next several years. Obviously these expectations are quite different from what we expect from Aubree, but not so much really. We expect him to listen in school, to continue to work on his speech, to act appropriately with his peers, etc. But with Brycen, we know it is going to take much longer to get to these points with a lot of extra help from his teachers, others that work with him, doctors, us, his sister, his grandparents, and his extended family and friends. Some people may feel that we are setting some of our expectations low for him. Mike and I have discussed this and due to our personalities, background, and our family dynamics...we have agreed that we want to celebrate and be surprised by each thing/word/activity that Brycen accomplishes. The other side of this, is if we set our expectations too high for him, we will experience disappointment and frustration when he doesn't meet them. The idea is to challenge him and ourselves by setting our expectations somewhere in the middle, but this is not easy considering he is still so young and we are still getting to know his strengths and weaknesses.
I have also taken a lot of time to wonder what Brycen must be feeling during all of this. We are working hard at learning to simplify our language to him, control our responses so they do not cause him to have a tantrum, be proactive when change is to come, and to just live as a family best as we can with the added stress (though it feels like this stress is less now that it has been affirmed that he needs the extra help and we were not imagining the things we were seeing). I ran across this website that gave me a little bit of insight into how he may be feeling now and in the future.
Please take a look at this, as I feel that everyone can benefit from reading this article, whether you know a child/adult with Autism or not!
http://www.ellennotbohm.com/ten_things_article.html
Monday, September 28, 2009
Friday, September 25, 2009
Woo-hoo! Some progress...and a temper tantrum!
Despite pulling Brycen from school for a week for our family vacation to Florida, he did amazingly well adjusting back to his school routine this week! Mike and I are amazed at the progress Brycen has made so far, not only with language, but he showed us over vacation that he can adapt to new places and things, as well as initiate play with a peer.
Just in the last couple days, Brycen spontaneously (and in imitation) has been saying "Boom Boom" in response to a song that is on one of his videos! His teacher reports he is saying "all gone" at lunch after he has drank all of his milk He also is doing more pointing...with one finger too, not just his whole hand! He has mastered the sign for "Thank you," though he still needs to be prompted when he needs to use it. And he is also imitating "Where'd it go?" when something is hidden or looking for it...though it comes out "whe go" though we all know what it means!
While in Florida, we stayed with some fabulous friends of ours who have an 8 yr old daughter. This is the first time that Brycen has played with her and after a couple days, he actually initiated play with her! She did great playing along with him and was a wonderful example for him! As we all know, Brycen is usually oblivious to other children around him unless they are right in front of him and initiating play with him. It was so exciting to see him come over to her to want her to play with him!
Brycen did have one incident at school on Thursday where he became very upset. Brycen is very routine oriented (as most children with an ASD are) and he becomes very upset and will throw a tantrum when parts of his routine that he loves or relies on are interrupted. We have found that if we are in a different environment (such as in Florida or at grandparent's houses), he will more easily adjust to a change, but if the change is in his typical environment, this will most likely result in a tantrum. Anyway, the teacher told Mike that they had to switch to a different place in the classroom to do greeting circle in the morning because there were some visitors there using the space they normally use. Brycen did not understand this change and became very upset, yelling and throwing things. We've determined that it was not the change in place that upset him, but now that he enjoys greeting circle in the morning, he probably thought they were not going to do it at all, which would have been completely out of the routine! The teacher has decided to adapt to this need of his and now they are going to do greeting circle in the two different places, switching every-other day to show him that it will still happen. What a wonderful teacher to notice that this will help him in the future!
On the other side of things, Brycen has begun grinding his teeth more often and has been chewin on everything. These types of sensory and compulsive habits are common among children with Autism. We try to give him something else to chew on to distract him, but this doesn't seem to be helping. These are some of the compulsive things that eventually medication may help, but I still feel that he is too young to start on medications but of course I don't want him to damage his teeth either, so we'll have to keep a close eye on this one.
Just in the last couple days, Brycen spontaneously (and in imitation) has been saying "Boom Boom" in response to a song that is on one of his videos! His teacher reports he is saying "all gone" at lunch after he has drank all of his milk He also is doing more pointing...with one finger too, not just his whole hand! He has mastered the sign for "Thank you," though he still needs to be prompted when he needs to use it. And he is also imitating "Where'd it go?" when something is hidden or looking for it...though it comes out "whe go" though we all know what it means!
While in Florida, we stayed with some fabulous friends of ours who have an 8 yr old daughter. This is the first time that Brycen has played with her and after a couple days, he actually initiated play with her! She did great playing along with him and was a wonderful example for him! As we all know, Brycen is usually oblivious to other children around him unless they are right in front of him and initiating play with him. It was so exciting to see him come over to her to want her to play with him!
Brycen did have one incident at school on Thursday where he became very upset. Brycen is very routine oriented (as most children with an ASD are) and he becomes very upset and will throw a tantrum when parts of his routine that he loves or relies on are interrupted. We have found that if we are in a different environment (such as in Florida or at grandparent's houses), he will more easily adjust to a change, but if the change is in his typical environment, this will most likely result in a tantrum. Anyway, the teacher told Mike that they had to switch to a different place in the classroom to do greeting circle in the morning because there were some visitors there using the space they normally use. Brycen did not understand this change and became very upset, yelling and throwing things. We've determined that it was not the change in place that upset him, but now that he enjoys greeting circle in the morning, he probably thought they were not going to do it at all, which would have been completely out of the routine! The teacher has decided to adapt to this need of his and now they are going to do greeting circle in the two different places, switching every-other day to show him that it will still happen. What a wonderful teacher to notice that this will help him in the future!
On the other side of things, Brycen has begun grinding his teeth more often and has been chewin on everything. These types of sensory and compulsive habits are common among children with Autism. We try to give him something else to chew on to distract him, but this doesn't seem to be helping. These are some of the compulsive things that eventually medication may help, but I still feel that he is too young to start on medications but of course I don't want him to damage his teeth either, so we'll have to keep a close eye on this one.
Tuesday, September 1, 2009
Outcome of Iowa City evaluation
Mike, Brycen and I visited the Child Psychiatry department at U of I Children's Hospital yesterday for a full evaluation by specialists that work with Autism. Brycen had individual evaluations completed by a speech clinician, resident physician, educational consultant, and psychologist with the overview completed by a Staff Child Psychiatrist. The diagnosis from the compilations of all of these evaluations was "Autistic Disorder with a likelihood of mental retardation." This was no surprise to us as he has already had the informal diagnosis of Autistic Disorder from Child Health Speciality Clinics in Fort Dodge. The "likelihood of mental retardation" stems from the fact they cannot given an accurate IQ test to a 3 yr old, but what they did determine is that his cognitive skills/development are behind those of the "typical" 3 yr old which then is "labeled" as MR. To us, this is just a label that will be re-evaluated in 2 years to get a more accurate diagnosis with his cognitive development. There was no question that his developmental skills are delayed, and he meets the criteria for "Autistic Disorder."
The combination of these two diagnosis will qualify him for the Intellectual Disabilities Waiver (formerly known as the Mental Retardation Waiver) which will provide Medicaid insurance for 1:1 therapy and further evaluations and appointments. He/we may also qualify for respite services as well as some other services that are available under the ID Waiver. The most important part is the Medicaid Insurance as our private insurance does not cover the majority of these services and will provide financial relief to us in the future for what he needs.
A written report will be provided within the next two weeks to us, his primary physician, AEA, and the school district with recommendations on the treatment plan specific to his needs. The U of I team has compared Brycen's communication skills to those of a 12-14 month old, which is comparable to where AEA rated him a few months ago. Though his fine and gross motor skills are similar to that of a 2 1/2 year old (how many 3 year olds can hit a ball pitched to them)!
If there is any other information in the written report that I feel is important for everybody to know, I will make sure to post it at the time we receive it. Otherwise, we don't feel medications can help with any of the symptoms he is showing at this time, as they rarely give medications to 3 year olds anyway. We were given permission to double the dose of Melatonin we were giving him each night so hopefully we will see a better sleep pattern from the higher dose. He will be starting 1:1 sessions with Kelsi (a student at BV) this week on Tues and Thurs from 3-4pm to help out with his communication skills and other pre-school skills. We are looking at requesting a change to his IEP to increase his 1:1 speech therapy from the school district after we receive the recommendations in the written report. Before looking into any additional therapy outside of school and Kelsi, we are going to wait and see how he progresses with these and re-assess in a couple months.
Brycen was a real trooper yesterday during all of these evaluations and meetings we had with the specialists! He adjusted well to the different people and obvious changes in his routine and not only showed us his strengths, but also the areas he needs help. He gave the specialists a clear picture of who he is on a daily basis, which helped them to give an accurate diagnosis, and he was able to "play" while doing so! Though I think he would have preferred to be at school!
He adjusted back to his new routine this morning of getting ready and going to school with no problems. He is our precious little boy that deserves all the love and help that we can give him! Thank you to everybody that has supported us this far and will continue to as we keep on our path to success with him!
The combination of these two diagnosis will qualify him for the Intellectual Disabilities Waiver (formerly known as the Mental Retardation Waiver) which will provide Medicaid insurance for 1:1 therapy and further evaluations and appointments. He/we may also qualify for respite services as well as some other services that are available under the ID Waiver. The most important part is the Medicaid Insurance as our private insurance does not cover the majority of these services and will provide financial relief to us in the future for what he needs.
A written report will be provided within the next two weeks to us, his primary physician, AEA, and the school district with recommendations on the treatment plan specific to his needs. The U of I team has compared Brycen's communication skills to those of a 12-14 month old, which is comparable to where AEA rated him a few months ago. Though his fine and gross motor skills are similar to that of a 2 1/2 year old (how many 3 year olds can hit a ball pitched to them)!
If there is any other information in the written report that I feel is important for everybody to know, I will make sure to post it at the time we receive it. Otherwise, we don't feel medications can help with any of the symptoms he is showing at this time, as they rarely give medications to 3 year olds anyway. We were given permission to double the dose of Melatonin we were giving him each night so hopefully we will see a better sleep pattern from the higher dose. He will be starting 1:1 sessions with Kelsi (a student at BV) this week on Tues and Thurs from 3-4pm to help out with his communication skills and other pre-school skills. We are looking at requesting a change to his IEP to increase his 1:1 speech therapy from the school district after we receive the recommendations in the written report. Before looking into any additional therapy outside of school and Kelsi, we are going to wait and see how he progresses with these and re-assess in a couple months.
Brycen was a real trooper yesterday during all of these evaluations and meetings we had with the specialists! He adjusted well to the different people and obvious changes in his routine and not only showed us his strengths, but also the areas he needs help. He gave the specialists a clear picture of who he is on a daily basis, which helped them to give an accurate diagnosis, and he was able to "play" while doing so! Though I think he would have preferred to be at school!
He adjusted back to his new routine this morning of getting ready and going to school with no problems. He is our precious little boy that deserves all the love and help that we can give him! Thank you to everybody that has supported us this far and will continue to as we keep on our path to success with him!
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