Last week was a week of evaluation after evaluation, a sick baby brother, and the stomach flu (although short lived wreaked a bit of havoc on our lives). Of course Alex somehow managed to escape getting the stomach flu like the rest of us, thank goodness!
On Wednesday we went to Wilder to see Dr. Newman for the first of three evaluations for the week. Gael (social worker) who does Alex's regular therapy referred us to their on staff psychiatrist for an evaluation for autism as well as whatever else he felt was fitting. We started by meeting with a nurse who took all of the intake information for the Dr. Then the Dr. came in and went over everything and discussed at length what he believed to be going on as well as how he can develop the best support system possible for us. We also discussed medication which at this point we are opposed to simply because we haven't tried anything else first. He said that he felt no medication was needed at this time and that it would probably make him bounce off the walls if anything. The Dr. wanted to look over Alex's school evaluations to see if there would be a reason to send him to the U of M for neuro testing due to possible drug and alcohol usage during the pregnancy. As of today at his regular therapy appointment we heard that Dr. Newman gave Alex a diagnosis of autism as well as separation anxiety (no big surprise there). This will allow us to go ahead with a referral to case management for services. He hasn't had a chance to look at the school testing but we should know soon if they want to do any further testing. This is all great news as now we have a diagnosis and we can move forward on treatments, therapies, services etc.
On Friday we went to the Family Achievement Center for a speech therapy and occupational therapy evaluations. The speech evaluation was first...during this he was a bit distracted by noises coming from other rooms but once they took a small break and got him a weighted vest and a bouncy wedge to sit on he could focus again. He scored a 74, 80 and above is in the normal range. They feel that with therapy twice a week for 6 months he should be able to fall within the normal ranges. Next was his OT eval, we of course know that there is a great need for OT as he already gets it at school. They will be working on self regulation, sensory, fine motor skills, dressing, and safety. He will get this twice a week for at least a year but probably longer. As of right now we have OT scheduled or Mondays and Fridays and speech for Fridays. I'm hoping to be able to find a time that works with my work schedule to get the other speech in. They thought that there should be some more days opening up in a few weeks.
All in all it has been a busy week filled with a lot of information that I'm still trying to process. It has also been a lot of phone calls, forms to fill out, and a bit of stress. It's almost like a full time job trying to coordinate everything. We are still on the waiting list for Fraser...Dr. Newman feels that it would be best to get an eval there too as they have more resources that would be available for us than Wilder does. I can't wait to see what all the therapy can do for Alex.
Thursday, May 24, 2012
Saturday, April 28, 2012
PDD-NOS or Autism?
It has been a while since I have had time to sit down and write. I guess you could say that this blog has been a bit neglected lately. A lot of things have been going on with our little man such as appointment after appointment that there doesn't seem to be the time to sit down and write or maybe this mommy is just too worn out at the end of the day.
I will continue for where we left off last time.... Alex has been seen at Wilder for about 4 months now as well as in school that long. He is loving school and wants to go every day especially on weekends when there is no school. There have been some ups and downs that come with going to school. Especially the colds and viruses that come along with that. I think (knock on wood) that we are past all of that! He has also had a bit of a hard time transitioning at school and keeping on task with what is going on. When he wants something he wants it now and wants to do it his way or else. We are working hard on this to teach him how to express his emotions as well as find a way for him to communicate what he wants. Picture ques have been a great thing! He now has a little ring of pictures that we carry around, of course mommy is continually thinking of pictures that need to be added. Thanks to Gael at Wilder we can get as many pictures as we want. Speaking of Wilder we finally have a diagnosis...PDD-NOS (Pervasive Developmental Disorder- Not Otherwise Specified, this is in the Autism category) as well as a lot of sensory issues. She determined that he is very close to being on the Spectrum but at that time didn't feel there were enough indicators. As of Friday Gael asked us if we were interested in a medication evaluation. I told her absolutely not, at least not when he is this young. If we had tried therapies and they didn't work then we would maybe talk about it but not now. She suggested that we get him in Sensory Integration Therapy as well as have him evaluation at Fraser for Autism.
After being on the phone most of the day with insurance companies as well as clinics we have Alex on a waiting list at Fraser that is a 4-6 month wait and an evaluation for Speech and Occupational Therapy on the 18th of May. I then proceeded to call the county to find out if there was a way he could qualify for any supplemental insurance or aid based on his diagnosis. The man that I spoke with was quite taken back by the fact that Alex had been diagnosed with an Autism disorder at the age of 3. He kept telling me that kids change as they get older and are we sure. I told him all of the things Alex has and even told him that he could watch him for a day. After this man got over his shock he told me that yes he could qualify but we would have to wait till our evaluation at Fraser was finished. Then he would have to be deemed disabled in order to qualify. I guess there is quite a process for this. So now we sit and wait for our evaluation to be scheduled. I also found out that if he does get deemed disabled he will qualify for social security as well.
This has been a very overwhelming process. I was just about in tears yesterday when they were asking me all sorts of questions as it was almost like they didn't believe me. Of course the whole time Alex was screaming in the background and pulling on me. One lady kept telling me oh you better go take care of that screaming. I was like he does that all day long for no know reason. Not sure that she liked that answer but kept talking to me.
The hard part about all of this is that these people are making a diagnosis on what THEY see, the problem with that is that there are far more things going on at home that aren't always present in the testing areas. I mean come to the grocery store with me and watch the behaviors. I know they are doing their job but I needed a place to vent about the process.
I think for now that is the shortened version of what has been going on here. I will add more when I get another little slice of time to do so.
I will continue for where we left off last time.... Alex has been seen at Wilder for about 4 months now as well as in school that long. He is loving school and wants to go every day especially on weekends when there is no school. There have been some ups and downs that come with going to school. Especially the colds and viruses that come along with that. I think (knock on wood) that we are past all of that! He has also had a bit of a hard time transitioning at school and keeping on task with what is going on. When he wants something he wants it now and wants to do it his way or else. We are working hard on this to teach him how to express his emotions as well as find a way for him to communicate what he wants. Picture ques have been a great thing! He now has a little ring of pictures that we carry around, of course mommy is continually thinking of pictures that need to be added. Thanks to Gael at Wilder we can get as many pictures as we want. Speaking of Wilder we finally have a diagnosis...PDD-NOS (Pervasive Developmental Disorder- Not Otherwise Specified, this is in the Autism category) as well as a lot of sensory issues. She determined that he is very close to being on the Spectrum but at that time didn't feel there were enough indicators. As of Friday Gael asked us if we were interested in a medication evaluation. I told her absolutely not, at least not when he is this young. If we had tried therapies and they didn't work then we would maybe talk about it but not now. She suggested that we get him in Sensory Integration Therapy as well as have him evaluation at Fraser for Autism.
After being on the phone most of the day with insurance companies as well as clinics we have Alex on a waiting list at Fraser that is a 4-6 month wait and an evaluation for Speech and Occupational Therapy on the 18th of May. I then proceeded to call the county to find out if there was a way he could qualify for any supplemental insurance or aid based on his diagnosis. The man that I spoke with was quite taken back by the fact that Alex had been diagnosed with an Autism disorder at the age of 3. He kept telling me that kids change as they get older and are we sure. I told him all of the things Alex has and even told him that he could watch him for a day. After this man got over his shock he told me that yes he could qualify but we would have to wait till our evaluation at Fraser was finished. Then he would have to be deemed disabled in order to qualify. I guess there is quite a process for this. So now we sit and wait for our evaluation to be scheduled. I also found out that if he does get deemed disabled he will qualify for social security as well.
This has been a very overwhelming process. I was just about in tears yesterday when they were asking me all sorts of questions as it was almost like they didn't believe me. Of course the whole time Alex was screaming in the background and pulling on me. One lady kept telling me oh you better go take care of that screaming. I was like he does that all day long for no know reason. Not sure that she liked that answer but kept talking to me.
The hard part about all of this is that these people are making a diagnosis on what THEY see, the problem with that is that there are far more things going on at home that aren't always present in the testing areas. I mean come to the grocery store with me and watch the behaviors. I know they are doing their job but I needed a place to vent about the process.
I think for now that is the shortened version of what has been going on here. I will add more when I get another little slice of time to do so.
Monday, January 30, 2012
The Beginning
The Beginning could mean many things, such as the day our little man was born or the beginning of his journey into Special Ed.I believe the beginning is both. To have one without the other would be leaving out part of the story. Of course I will not chronicle things from his birth but will point out that there were many difference between him and other children his age. From birth on Alex craved stimulation..he would watch TV from the day he was born and loved to be in motion (the baby swing was his best friend). He also started talking multiple words strung together at 9 months old. Alex was very particular about things (he hated socks and shoes, wanted doors closed, lined things up etc). As he got older the behaviors started, he started acting out and couldn't for the life of him sit still.
I discussed these behaviors with the pediatrician quite frequently and was told that it was normal and then was told that I needed to be sterner with him or that my husband needed to discipline more. We were also told to put him in preschool and see what happens. We of course had a tough decision to make...where to send him. The decision pretty much came down to what was most convenient and that happened to be a Catholic school. We did know others who had sent there kids there and had a great experience. The first day comes around which is a parent child day. Alex was so excited to go to school and hoped for the best. Of course reality hit and he couldn't sit still and transitions were very hard for him. He ended up crying and we had to take him out of the room. They convinced us to stay and see what happens. He was good while they were outside. He continued to go there for a month but I kept hearing that he had a rough day and that he needed a lot of supervision. Finally they recommended that we have him screened by Early Childhood. The problem was that his school was in a different county so they wouldn't do it there so we had to do it in our county. I worked some mommy magic and got him an appointment for the next week.
We went to the screening appointment and of course it went just about as I expected it to go. He couldn't a whole lot of what they asked, mainly due to the fact that he couldn't sit still. Of course we had a lady that did not do well with kids who don't do as asked. After getting her supervisor to assess him we were finally referred on to a ECSE (Early Child Special Education) team. Within another week we were in for our next appointment. After that one they came out to our house to observe him. Of course Thanksgiving was in there and threw a kink into getting his report done so he could get into school.
They determined that he qualified for services under a general label of Developmentally Delayed. In this they know that he has fine motor skill issues, behavioral issues, sensory issues, and autistic like behaviors (possibly PDD-NOS). It was also suggested to us that we should have him screened medically for any neurological issues mainly ADHD. After a few places telling us that they didn't take our insurance we found The Wilder Foundation. The good news about Wilder is that they have a grant for kids under 5. Alex is now enrolled in school 4 days a week for 2 1/2 hrs a day. He also gets to ride a bus to and from school. He is ecstatic about it! We have also been seen at Wilder multiple times.
I will end this post here for now...more details to come as I have more time to write. Right now my little man wants his mommy to snuggle him and I can't resist that.
I discussed these behaviors with the pediatrician quite frequently and was told that it was normal and then was told that I needed to be sterner with him or that my husband needed to discipline more. We were also told to put him in preschool and see what happens. We of course had a tough decision to make...where to send him. The decision pretty much came down to what was most convenient and that happened to be a Catholic school. We did know others who had sent there kids there and had a great experience. The first day comes around which is a parent child day. Alex was so excited to go to school and hoped for the best. Of course reality hit and he couldn't sit still and transitions were very hard for him. He ended up crying and we had to take him out of the room. They convinced us to stay and see what happens. He was good while they were outside. He continued to go there for a month but I kept hearing that he had a rough day and that he needed a lot of supervision. Finally they recommended that we have him screened by Early Childhood. The problem was that his school was in a different county so they wouldn't do it there so we had to do it in our county. I worked some mommy magic and got him an appointment for the next week.
We went to the screening appointment and of course it went just about as I expected it to go. He couldn't a whole lot of what they asked, mainly due to the fact that he couldn't sit still. Of course we had a lady that did not do well with kids who don't do as asked. After getting her supervisor to assess him we were finally referred on to a ECSE (Early Child Special Education) team. Within another week we were in for our next appointment. After that one they came out to our house to observe him. Of course Thanksgiving was in there and threw a kink into getting his report done so he could get into school.
They determined that he qualified for services under a general label of Developmentally Delayed. In this they know that he has fine motor skill issues, behavioral issues, sensory issues, and autistic like behaviors (possibly PDD-NOS). It was also suggested to us that we should have him screened medically for any neurological issues mainly ADHD. After a few places telling us that they didn't take our insurance we found The Wilder Foundation. The good news about Wilder is that they have a grant for kids under 5. Alex is now enrolled in school 4 days a week for 2 1/2 hrs a day. He also gets to ride a bus to and from school. He is ecstatic about it! We have also been seen at Wilder multiple times.
I will end this post here for now...more details to come as I have more time to write. Right now my little man wants his mommy to snuggle him and I can't resist that.
Sunday, January 29, 2012
Why A New Blog?
I've decided that having a blog fully dedicated to our journey to answers, diagnosis', etc for our little man would be ideal. That way I can give updates here and keep the other blog for happy and fun things that the boys do. I am going to try and start from the beginning and work my way to the present. Of course this may take a while as time is limited around here. Look forward to our journey.
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