Things were
finally start to fall into place after months of questioning myself and
eventually pursuing my questions. I had found a place to take our son to really
begin the next phase of our journey. It took us a little while to get here
because of fear. I admit it, I was scared. I wanted answers, but at the same
time I was scared of what we would discover. It took me a while to prepare for
what was ahead. It took me a while especially as I was battling lack of support
from those around me.
Once again during this time I was battling commentary from many around me. The comments of “he is just a toddler, it is normal “he will grow out of it” “you are just looking for reason, he is fine” “he will catch up, he is still young” continued to fly around me. These comments made me question myself, but just like with Marshmallow’s speech delay, I had a gut feeling and knew something was off with our son. I just wanted answers and knew that while some of this may be him just being a toddler, there were things to be concerned about. The more time I spent around other children in his age group, the more his quirks stood out to me. I did not see many other children displaying many of the behaviors that concerned me. As I began to reach out to those who have walked this road ahead of me, I realized I was right. I was getting the support I needed. They knew the fears I had and yet encouraged me to pursue. It was the support I needed to finally be okay with what the future may hold for our family. No matter how hard or overwhelming the journey may be.
We were now into November. And I had decided to start asking questions about preschool. I had previously asked questions in the fall to find out how it worked for him. I was told that would basically have to wait till at least 3 months before he turned 3 to start any process for the preschool program. The best option to start with would be to contact our school district and get our son enrolled into the developmental preschool program. So that is where I started. I called the school and began the process. I had to get him signed up for an evaluation. So we had this scheduled for December, after a bit of me having to be mama bear to get it scheduled. They wanted to wait till he was already 3 to do the tests, which seemed like a load of bull to me. Thankfully we were out of town during the evaluation day in January so she allowed us to register for the December date. I really just wanted to get the process going, in hopes could start quickly after Marshmallow turned 3. So I had this scheduled for beginning of December as well.
Thankfully, December approached quickly as we waited for these appointments. First up was our appointment with the pediatric psychologist who specialized in autism spectrum disorders. Our appointment with her was long. We were there for just over three hours. She spent a little time asking me questions, but the majority of it was her interacting with Marshmallow and doing her evaluation on him through play. I was surprised at how quickly he warmed up to her and connected with her. It was something I had honestly not seen happen very often, but made me feel good about her getting a good read on our child. She would see more of who he was day to day, verses him on a very bad day and not wanting to cooperate in the slightest bit. He did amazing with her and the evaluation went great. Especially considering how long we were there with her.
Ultimately, she saw my concerns. She basically told me that he fell mildly on the spectrum in several areas, with his speech/communication being the main link in many of the concerns. She discussed with me a little about how autism is currently being diagnosed and what this all means. There have been changes in the recent years with autism and it is no longer being diagnosed the way it was several years ago. It is undergoing a change. It is now autism spectrum disorder (ASD) and it is an umbrella diagnosis which covers many things. It is easier to be diagnosed and in turn get access to the resources needed. ASD is also being diagnosed much early and interventions given much earlier. Much of what she said was over my head and overwhelming. So much to digest, so quickly. But I had a new starting place.
She told me that she will gather everything together for her final diagnosis/evaluation review and that she will meet with us again to go over all of it with both my husband and I. In the meantime, she wanted me to contact our case worker with the insurance and let him know she is recommending Marshmallow for applied behavioral analysis (ABA) therapy. To go ahead and get the ball rolling, as some of the programs have wait lists, and she wanted as little delay in the process as possible. She told me that basically with as much intervention as we can do, that the hope would be in the next 2-3 years there will be little sign that Marshmallow has any signs of falling on the spectrum. Not to say he will be cured, but that he will be able to function with his peers very well with a few possible quirks. These quirks will hopefully be molded into behaviors that are more socially acceptable. Her hope would be that Marshmallow is doing nearly 40 hours a week between ABA therapy, preschool and speech. That the three in combination will give him the best outlook. What that means is that ABA is very intense. We would be looking at several hours of therapy a day with this program. How exactly it looks, we will not know until we meet with the ABA therapist and make a plan. I now had some answers and my concern was validated.
I started to make calls right away. I got a list from our case worker of programs to contact. I emailed the psychologist the list to see which she recommended us to call first, second and third. She was very positive with our options and gave her opinion from her experience in working with the various programs. Sadly, I was discouraged with our first contact. We were outside of their service area and the preschool program they also offered (which would have been a great alternative for us) was full. No wait list option even available. I was heartbroken and scared that the next calls would go the same. I was terrified none of the programs would service our area and that we would just have to settle with a mediocre programs for our son. I sucked it up and left a message with the second office. This time things fell in place. After a long conversation of where we were at in the process and them getting the approval from insurance, we got the process of getting Marshmallow a meeting going. This time the process flowed quickly, despite the hiccup of not having an official diagnosis in hand. Our case worker with our insurance was on our side and wanted to move the process along and have things going simultaneously. So the first step was getting an evaluation with an ABA therapist, so they could design a program/plan specific for Marshmallow. We heard back fairly quickly and got the initial appointment scheduled for the last week in January. Only a few weeks out from where we were!
Our second December appointment was the preschool evaluation. I showed up that day very prepared, with everything they requested I bring with me. I have created a nice binder with all the evaluations and important info on Marshmallow. Works to keep everything in one place for him. They wanted copies of his speech evaluations, his hearing test that we had done over the summer, and all sorts of other stuff. This made it easier for me. So I get there and we wait. Eventually we are taken back to begin the process.
From the moment we began, I knew that this evaluation was not going to go well. We were taken to a class room, where lots of distractions were going on. A few other children in the room and lots of toys and things around the room to distract Marshmallow. The teacher/evaluator sat us down and began the evaluation. But not before Marshmallow grabbed a toy to play with. There was no taking it from him without a meltdown, and she agreed to let him play. She went on to evaluate his speech. Trying to see what words and sounds that Marshmallow could say. How well he articulated. It was a frustrating process for all of us. He had no report with this lady and did not want to cooperate. So every word I have to get his attention, have him look at me and visually stimulate him to repeat the word the best he could. He did okay, but took a lot of prompting and he struggled. She moved on to having him identify a picture in a field of 15 other pictures. This was way over his head. We are working on a field of 3-4 at speech with a picture of object he knows. To ask him to identify something he does not easily know or recognize in such a large field was too much. He did not know what to do. She saw that this was not going to get anywhere with him and we ended this part of the test. As he was done anyhow, he does not do this much “work” at one time in speech, so it was asking a lot of him. We then were taken to another teacher to do the next part of the test in a new room. And this part did not go much better. They were asking him things well above his level. He again had no connection with the teacher and was distracted with a new room. This went on 3 more times. Till the last teacher asked if he was done, and was on the verge of a meltdown. Which he was. It was too much. The test was well over his head. I learned it was geared to 3-5 year olds. Which Marshmallow on most things is not on level with his peers when it comes to speech/cognitive development. Pretty much he was able to do very little of the testing and well we left before they were even done the test. But they saw nothing was going to come of continuing to push. I left discouraged, as I did not know what this meant, other than shows he is in need of this preschool program and should show no questions of him qualifying for it. We were told they would be in touch soon with what the next steps would be.
A couple weeks later, I got a letter in the mail stating they wanted to do further evaluations on Marshmallow to make sure the test was accurate in evaluating him. I was frustrated. I now had to wait more and realized this process was not going to be easy either. We were now into winter break time, so contacting the school was not an option and I had to just wait. I was very glad I had pushed to have his evaluation done sooner than later.
I gave it through the holidays and found out when the school started back up in January. I called the school the second day they were open to find out what we needed to do and set up the next evaluation. This was exactly why I did not want to wait in starting the process originally. I knew I would have hoops to jump through to my son into the school. I just did not know how much or how long. Or what the process even looked like. So I left a message for the person to call me back to set up the appointment. I was able to schedule it for mid-January, actually happened to be on Marshmallow’s 3rd birthday.
So I took Marshmallow back for the 2nd the evaluation. This one was with a contracted psychologist to see if the initial evaluation showed accurate findings. I spent about an hour with the evaluator talking about Marshmallow and where he is in his development. He tried to do some tests with Marshmallow, but they were well over his head. The evaluator after a couple different tries with different approaches, saw that it was beyond what Marshmallow could do and said he had enough information. He most certainly saw that Marshmallow would benefit from the preschool program and would try to encourage the school to expedite the process as much as possible. He told me that the school had 60 days at most to get the process completed. He also told me that the program would be 3 hours 4 days a week and the cost is 100% covered through the state. As they finalized everything we would get more of the details, but that he is recommending us for the program. He was happy to know that we were already in the process of pursuing an ASD diagnosis, as he noticed some things during the meeting that were concerning to him. He also in addition to the school doing a speech evaluation, wanted the school to also do an OT evaluation as well. I already got the speech evaluation scheduled and was told they would contact me to schedule the OT evaluation. The speech evaluation was scheduled for a couple more weeks out.
Things were finally starting to fall into place. So much going on at once. Waiting for the final review of an ASD diagnosis, getting the ABA therapy plan figured out and started, and enrolling Marshmallow in preschool. Life has been a bit crazy, with lots to take in and learn. But feeling better that we have a plan and a direction. Just waiting for everything to all come together.
Once again during this time I was battling commentary from many around me. The comments of “he is just a toddler, it is normal “he will grow out of it” “you are just looking for reason, he is fine” “he will catch up, he is still young” continued to fly around me. These comments made me question myself, but just like with Marshmallow’s speech delay, I had a gut feeling and knew something was off with our son. I just wanted answers and knew that while some of this may be him just being a toddler, there were things to be concerned about. The more time I spent around other children in his age group, the more his quirks stood out to me. I did not see many other children displaying many of the behaviors that concerned me. As I began to reach out to those who have walked this road ahead of me, I realized I was right. I was getting the support I needed. They knew the fears I had and yet encouraged me to pursue. It was the support I needed to finally be okay with what the future may hold for our family. No matter how hard or overwhelming the journey may be.
We were now into November. And I had decided to start asking questions about preschool. I had previously asked questions in the fall to find out how it worked for him. I was told that would basically have to wait till at least 3 months before he turned 3 to start any process for the preschool program. The best option to start with would be to contact our school district and get our son enrolled into the developmental preschool program. So that is where I started. I called the school and began the process. I had to get him signed up for an evaluation. So we had this scheduled for December, after a bit of me having to be mama bear to get it scheduled. They wanted to wait till he was already 3 to do the tests, which seemed like a load of bull to me. Thankfully we were out of town during the evaluation day in January so she allowed us to register for the December date. I really just wanted to get the process going, in hopes could start quickly after Marshmallow turned 3. So I had this scheduled for beginning of December as well.
Thankfully, December approached quickly as we waited for these appointments. First up was our appointment with the pediatric psychologist who specialized in autism spectrum disorders. Our appointment with her was long. We were there for just over three hours. She spent a little time asking me questions, but the majority of it was her interacting with Marshmallow and doing her evaluation on him through play. I was surprised at how quickly he warmed up to her and connected with her. It was something I had honestly not seen happen very often, but made me feel good about her getting a good read on our child. She would see more of who he was day to day, verses him on a very bad day and not wanting to cooperate in the slightest bit. He did amazing with her and the evaluation went great. Especially considering how long we were there with her.
Ultimately, she saw my concerns. She basically told me that he fell mildly on the spectrum in several areas, with his speech/communication being the main link in many of the concerns. She discussed with me a little about how autism is currently being diagnosed and what this all means. There have been changes in the recent years with autism and it is no longer being diagnosed the way it was several years ago. It is undergoing a change. It is now autism spectrum disorder (ASD) and it is an umbrella diagnosis which covers many things. It is easier to be diagnosed and in turn get access to the resources needed. ASD is also being diagnosed much early and interventions given much earlier. Much of what she said was over my head and overwhelming. So much to digest, so quickly. But I had a new starting place.
She told me that she will gather everything together for her final diagnosis/evaluation review and that she will meet with us again to go over all of it with both my husband and I. In the meantime, she wanted me to contact our case worker with the insurance and let him know she is recommending Marshmallow for applied behavioral analysis (ABA) therapy. To go ahead and get the ball rolling, as some of the programs have wait lists, and she wanted as little delay in the process as possible. She told me that basically with as much intervention as we can do, that the hope would be in the next 2-3 years there will be little sign that Marshmallow has any signs of falling on the spectrum. Not to say he will be cured, but that he will be able to function with his peers very well with a few possible quirks. These quirks will hopefully be molded into behaviors that are more socially acceptable. Her hope would be that Marshmallow is doing nearly 40 hours a week between ABA therapy, preschool and speech. That the three in combination will give him the best outlook. What that means is that ABA is very intense. We would be looking at several hours of therapy a day with this program. How exactly it looks, we will not know until we meet with the ABA therapist and make a plan. I now had some answers and my concern was validated.
I started to make calls right away. I got a list from our case worker of programs to contact. I emailed the psychologist the list to see which she recommended us to call first, second and third. She was very positive with our options and gave her opinion from her experience in working with the various programs. Sadly, I was discouraged with our first contact. We were outside of their service area and the preschool program they also offered (which would have been a great alternative for us) was full. No wait list option even available. I was heartbroken and scared that the next calls would go the same. I was terrified none of the programs would service our area and that we would just have to settle with a mediocre programs for our son. I sucked it up and left a message with the second office. This time things fell in place. After a long conversation of where we were at in the process and them getting the approval from insurance, we got the process of getting Marshmallow a meeting going. This time the process flowed quickly, despite the hiccup of not having an official diagnosis in hand. Our case worker with our insurance was on our side and wanted to move the process along and have things going simultaneously. So the first step was getting an evaluation with an ABA therapist, so they could design a program/plan specific for Marshmallow. We heard back fairly quickly and got the initial appointment scheduled for the last week in January. Only a few weeks out from where we were!
Our second December appointment was the preschool evaluation. I showed up that day very prepared, with everything they requested I bring with me. I have created a nice binder with all the evaluations and important info on Marshmallow. Works to keep everything in one place for him. They wanted copies of his speech evaluations, his hearing test that we had done over the summer, and all sorts of other stuff. This made it easier for me. So I get there and we wait. Eventually we are taken back to begin the process.
From the moment we began, I knew that this evaluation was not going to go well. We were taken to a class room, where lots of distractions were going on. A few other children in the room and lots of toys and things around the room to distract Marshmallow. The teacher/evaluator sat us down and began the evaluation. But not before Marshmallow grabbed a toy to play with. There was no taking it from him without a meltdown, and she agreed to let him play. She went on to evaluate his speech. Trying to see what words and sounds that Marshmallow could say. How well he articulated. It was a frustrating process for all of us. He had no report with this lady and did not want to cooperate. So every word I have to get his attention, have him look at me and visually stimulate him to repeat the word the best he could. He did okay, but took a lot of prompting and he struggled. She moved on to having him identify a picture in a field of 15 other pictures. This was way over his head. We are working on a field of 3-4 at speech with a picture of object he knows. To ask him to identify something he does not easily know or recognize in such a large field was too much. He did not know what to do. She saw that this was not going to get anywhere with him and we ended this part of the test. As he was done anyhow, he does not do this much “work” at one time in speech, so it was asking a lot of him. We then were taken to another teacher to do the next part of the test in a new room. And this part did not go much better. They were asking him things well above his level. He again had no connection with the teacher and was distracted with a new room. This went on 3 more times. Till the last teacher asked if he was done, and was on the verge of a meltdown. Which he was. It was too much. The test was well over his head. I learned it was geared to 3-5 year olds. Which Marshmallow on most things is not on level with his peers when it comes to speech/cognitive development. Pretty much he was able to do very little of the testing and well we left before they were even done the test. But they saw nothing was going to come of continuing to push. I left discouraged, as I did not know what this meant, other than shows he is in need of this preschool program and should show no questions of him qualifying for it. We were told they would be in touch soon with what the next steps would be.
A couple weeks later, I got a letter in the mail stating they wanted to do further evaluations on Marshmallow to make sure the test was accurate in evaluating him. I was frustrated. I now had to wait more and realized this process was not going to be easy either. We were now into winter break time, so contacting the school was not an option and I had to just wait. I was very glad I had pushed to have his evaluation done sooner than later.
I gave it through the holidays and found out when the school started back up in January. I called the school the second day they were open to find out what we needed to do and set up the next evaluation. This was exactly why I did not want to wait in starting the process originally. I knew I would have hoops to jump through to my son into the school. I just did not know how much or how long. Or what the process even looked like. So I left a message for the person to call me back to set up the appointment. I was able to schedule it for mid-January, actually happened to be on Marshmallow’s 3rd birthday.
So I took Marshmallow back for the 2nd the evaluation. This one was with a contracted psychologist to see if the initial evaluation showed accurate findings. I spent about an hour with the evaluator talking about Marshmallow and where he is in his development. He tried to do some tests with Marshmallow, but they were well over his head. The evaluator after a couple different tries with different approaches, saw that it was beyond what Marshmallow could do and said he had enough information. He most certainly saw that Marshmallow would benefit from the preschool program and would try to encourage the school to expedite the process as much as possible. He told me that the school had 60 days at most to get the process completed. He also told me that the program would be 3 hours 4 days a week and the cost is 100% covered through the state. As they finalized everything we would get more of the details, but that he is recommending us for the program. He was happy to know that we were already in the process of pursuing an ASD diagnosis, as he noticed some things during the meeting that were concerning to him. He also in addition to the school doing a speech evaluation, wanted the school to also do an OT evaluation as well. I already got the speech evaluation scheduled and was told they would contact me to schedule the OT evaluation. The speech evaluation was scheduled for a couple more weeks out.
Things were finally starting to fall into place. So much going on at once. Waiting for the final review of an ASD diagnosis, getting the ABA therapy plan figured out and started, and enrolling Marshmallow in preschool. Life has been a bit crazy, with lots to take in and learn. But feeling better that we have a plan and a direction. Just waiting for everything to all come together.
Click here to read Part Four.
http://smorepuma.blogspot.com/2015/02/real-life-part-four.html - part four
http://smorepuma.blogspot.com/2015/01/real-life-part-one.html - part one
http://smorepuma.blogspot.com/2015/02/real-life-part-two.html - part two
http://smorepuma.blogspot.com/2015/02/real-life-part-four.html - part four
http://smorepuma.blogspot.com/2015/01/real-life-part-one.html - part one
http://smorepuma.blogspot.com/2015/02/real-life-part-two.html - part two
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