Sunday, February 19, 2017
Speech Therapy
We have also started Dylan in Speech Therapy because this school follows a speech therapist but the speech therapist does not technically work directly with Dylan. I found a list of therapists that accepted our new insurance and called one that mentioned working with kids in a school setting so I figured she would be a good fit. We are going to meet with her one or two times a week and go from there. We have been told to pretty much make him work for ANYTHING he wants, so basically he should not have access to roam and do what he wants, when he wants. Fun, right? Just more work for us, but if we want to help him in the long run, we really need to take it serious.
Wednesday, January 25, 2017
Utah Autism Academy
Dylan started at Utah Autism Academy this week and we are excited to see where things go from here. Sherry and her team have done the hard work and have him in a good position to move forward. I meet with them tomorrow to fill out paperwork and then next week to go over his treatment plan. I love that they send an email everyday to show how the day went, here are the two emails I have received so far:
January 23rd:
"Afternoon - By Katie
January 23rd:
"Afternoon - By Katie
Dylan was motivated by puzzles, playing with snow, the gym, playing the piano, the sensory room, and playing with water. With that motivation we worked on pairing with peers and staff, following safety instructions, using eye contact, appropriately gaining attention (vocally and physically), rolling a ball, following one step directions, cleaning up after activities, parallel play with peers, waiting, and relinquishing items. He had maladaptive behaviors for the function of access and escape. This looked like flopping, crying, attempting to head bang, and pinching. The effective intervention used was giving choices and prompting functional communication. Something Dylan did well today was parallel play. He was able to sit and play with a bucket of snow with his peers for an extended period of time.
Mid-Morning - By Cindy
Dylan was motivated by the hula hoop and a Frisbee. We used the hula hoop for interacting with staff and we used the Frisbee to help with transitions from one location to another. He exhibited some head banging behaviors on the arm of staff, for the function of access when it was time to transition away from an activity. The intervention was to give him choices of other activities by showing him items he could choose from. He did well transitioning from room to room.
Dylan was motivated by throwing balls in the air, tickles, being chased, and swinging. With that motivation we worked on pairing, gaining attention appropriately, following safety directions (hold my hand, wait, stop and come here), cleaning up and following directions. Dylan had maladaptive behavior for the function of escape/access that looked like attempting to elope, and head bang. The effective intervention for head banging was to give him squeezes on his head throughout the session and block his eloping. Something Dylan did well today was showing me he was ready to leave an area. He would go to hold my hand or clean up the activity he was doing. He also did well requesting to "go". Dylan ate a few gold fish and a string cheese for snack."
January 24th:
"Afternoon- By Mikayla
Dylan was motivated by hula hoops, a timer, the sensory room, and dumping a bin of balls from the ball pit. With that motivation we worked on pairing, transitions, following directions, Manding for desired items and actions, and going to the bathroom. He had maladaptive behaviors for the function of access and escape. This looked like flopping and eloping. The effective intervention was prompting Dylan back to the original spot of elopement and to follow directions. We also used a timer to visual show Dylan how much time was left at a specific task (approximately two minutes.) Something he did well today was engaging in a game of dumping the balls in the ball pit. With some prompting, Dylan helped fill a bin full of balls. When it was full, he sat in the ball pit and echoed an approximation of "dump." The balls were then dumped on Dylan. He ate goldfish.
Mid-morning - By Bailey
Dylan was motivated by being pushed in the rolling chair, playing on the teeter totter, playing with play dough. He was also motivated by building towers with blocks then knocking them over. He was motivated by playing musical instruments, being pushed in the swing, playing in the ball pit, and being tickled. With that motivation we worked on pairing, following one step directions, following safety instructions, and rolling and throwing the ball. He had maladaptive behaviors for the function of escape. This looked like attempting to elope. The effective intervention was priming him with a timer. Something Dylan did well today was he did a great job throwing the balls in the ball pit. He also did a good job with the safety instruction "hold my hand".
Morning -By Blia
Dylan was motivated by swinging, the sensory room, gym, a car, and ball. With that motivation we worked on paring, following directions, appropriate ways of gaining attention, holding hands, vocally imitating push, and rolling a ball standing up. He had maladaptive behaviors for the function of access. This looked like eloping and falling on the ground. The effective intervention was a blocking response, and helping him to follow through with the direction. Something he did well today was appropriately taking my hand if he wanted to leave the room or carry him on my back. He ate some gold fish crackers."
Brandon and I have both got a kick out of this because we can just envision how he is flopping to the floor, head banging their arm, or trying to elope, ha ha. Dylan did make me feel good when I dropped him off the second day! We just drive up to the door and a lady comes out to see who is there and radios to whomever will have Dylan for the morning, that person then comes to get him from the car, so nice! Well I got him out of his car seat and was waiting for them to come, so he climbed on my back. A lady came out to get him so I got him down and told him bye. The lady asked him to give her five but instead he waved to her and grabbed her hand. I told him bye and then he reached for my hand. I walked a little way with them and told him bye again and he waved to me, but then reached for my hand again. I told him I had to go as they got to the door and let go of his hand. He continued to reach out for me, but wasn't sad, so I told him bye and I love him and will see him later. That made me feel good that he actually wanted me!!
IEP
Even though we have pulled Dylan out of the school district, they wanted to have his IEP meeting so that if we change our mind and bring him back they have that on file. I think I say this every time, but I have read so many comments on Facebook groups of IEP's being scary and you leave them crying or having to fight for what you want, well I don't really know what I am doing, but feel that they have my sons best intention in mind and I am happy with what they have on there. Sherry said they already miss him in class but want to be updated on him!
I mainly love going and seeing what they have to say about Dylan and the changes they are seeing. But most importantly, I love seeing the love and care they show for him! He has definitely been in a place for these past 2 years where he has been well taken care of and that is sad to take him away from, but I think they will love him just as much at Utah Autism Academy.
My take aways from this meeting is that they know Dylan and he loves his treats, therefore, he works to get those treats! They said he often tries to skip past some work to get to the treat, such as, when looking through a book of things he should do(each page has an assignment type thing) he often does the first page and then looks for the page with the snack on it, so that he can get his snack.
The speech therapist had so much excitement for his progress and wants us to make sure they know what they have been doing this year because she feels it is working out so well. Instead of having her come once a week for a longer amount of time, she has been coming 3-4 times a week for 5-10 minutes at a time. She wonders if he has Apraxia. The way she described it is say you want to go to a store but you walk out your door and there is a field with very tall grass blocking your way. You trudge through until you get to your destination. The next time you go to the store, same problem, however, you have created an idea of where to go from walking on the grass previously so you know where you are going and that continues until the grass has been pushed down and you have your path made. Dylan has the same problem, but instead of the trail being made more visible, his grass grows quickly and covers his previous trail. It may take him a lot more "trips" and more frequently for his "grass" to stay down. She used an example of one day he kept referring to Bubbles as "buh" all session long, she was amazed. The next day, nothing!
She wants us to make sure we have an actual Speech Therapist working with him to continue working on motor development so that he can make connections on how to move his mouth to get the correct sound out. She talked about how he has been babbling so much more and that he can produce sounds she asks for, but it is usually with another sound attached. For example, she asks him to say "ee" He will start babbling(but she can see he is working and really trying to get to the right sound) so it sounds something like, "mmmemegubmee"so they want him to really work on the motor part of it and be able to produce only the sound asked for on command. Sherry had showed her our video of Dylan saying,"I love you" and that made her ecstatic! I could see she loves Dylan just like the teachers do. She laughed about the treats and said she had quit telling Dylan "No" when he came to her. She would take him into the kitchen area of the class to work with him. Dylan knows that was where the good stuff was kept, so he would search the cupboards and find his treat. She would place it on the table and when they were done that was what he earned!
The Occupational Therapist started off by saying he must not have got the memo of Dylan's love for treats, because he didn't always work as good with him, ha ha. He is able to unbutton things, take lids off, stack 9(on this attempt) blocks and a few other things. He wasn't able to button back up, put lids on, build things out of blocks or copy what he did in drawing(like OT draws straight line and Dylan then does the same). He did say, he felt like Dylan was just "Done" and didn't want to put forth the effort so he probably could do some of this stuff but didn't. He said maybe if he had the treats, he would have been willing to do more ha ha! In this area we need to work on the writing because he just doesn't care for that too much. They want him to be doing as they do and follow their lead. I learned something here as well, and this just shows I haven't really worked with him in this area(oops) but when the OT was talking about scissors, it requires him using both hands but he knows what needs to be done, but when forced to use one hand he would use the right hand. Sherry spoke up and said they had decided a while ago that they thought he was left handed and asked my opinion. I really didn't know what to say, because I have seen him use both hands but I just assumed right handed, but there is a lot of left handed on both sides of the family. It will be interesting to see what he ends up being and I will try to work with him a little bit!
In a classroom setting they are continuing on matching, following directions, sitting in group settings for longer amounts of time, and his social skills. They said he has come a long way in this and when completing tasks he often looks up to them for approval. Before he would just continue on and not pay attention to there being someone there.
I mainly love going and seeing what they have to say about Dylan and the changes they are seeing. But most importantly, I love seeing the love and care they show for him! He has definitely been in a place for these past 2 years where he has been well taken care of and that is sad to take him away from, but I think they will love him just as much at Utah Autism Academy.
My take aways from this meeting is that they know Dylan and he loves his treats, therefore, he works to get those treats! They said he often tries to skip past some work to get to the treat, such as, when looking through a book of things he should do(each page has an assignment type thing) he often does the first page and then looks for the page with the snack on it, so that he can get his snack.
The speech therapist had so much excitement for his progress and wants us to make sure they know what they have been doing this year because she feels it is working out so well. Instead of having her come once a week for a longer amount of time, she has been coming 3-4 times a week for 5-10 minutes at a time. She wonders if he has Apraxia. The way she described it is say you want to go to a store but you walk out your door and there is a field with very tall grass blocking your way. You trudge through until you get to your destination. The next time you go to the store, same problem, however, you have created an idea of where to go from walking on the grass previously so you know where you are going and that continues until the grass has been pushed down and you have your path made. Dylan has the same problem, but instead of the trail being made more visible, his grass grows quickly and covers his previous trail. It may take him a lot more "trips" and more frequently for his "grass" to stay down. She used an example of one day he kept referring to Bubbles as "buh" all session long, she was amazed. The next day, nothing!
She wants us to make sure we have an actual Speech Therapist working with him to continue working on motor development so that he can make connections on how to move his mouth to get the correct sound out. She talked about how he has been babbling so much more and that he can produce sounds she asks for, but it is usually with another sound attached. For example, she asks him to say "ee" He will start babbling(but she can see he is working and really trying to get to the right sound) so it sounds something like, "mmmemegubmee"so they want him to really work on the motor part of it and be able to produce only the sound asked for on command. Sherry had showed her our video of Dylan saying,"I love you" and that made her ecstatic! I could see she loves Dylan just like the teachers do. She laughed about the treats and said she had quit telling Dylan "No" when he came to her. She would take him into the kitchen area of the class to work with him. Dylan knows that was where the good stuff was kept, so he would search the cupboards and find his treat. She would place it on the table and when they were done that was what he earned!
The Occupational Therapist started off by saying he must not have got the memo of Dylan's love for treats, because he didn't always work as good with him, ha ha. He is able to unbutton things, take lids off, stack 9(on this attempt) blocks and a few other things. He wasn't able to button back up, put lids on, build things out of blocks or copy what he did in drawing(like OT draws straight line and Dylan then does the same). He did say, he felt like Dylan was just "Done" and didn't want to put forth the effort so he probably could do some of this stuff but didn't. He said maybe if he had the treats, he would have been willing to do more ha ha! In this area we need to work on the writing because he just doesn't care for that too much. They want him to be doing as they do and follow their lead. I learned something here as well, and this just shows I haven't really worked with him in this area(oops) but when the OT was talking about scissors, it requires him using both hands but he knows what needs to be done, but when forced to use one hand he would use the right hand. Sherry spoke up and said they had decided a while ago that they thought he was left handed and asked my opinion. I really didn't know what to say, because I have seen him use both hands but I just assumed right handed, but there is a lot of left handed on both sides of the family. It will be interesting to see what he ends up being and I will try to work with him a little bit!
In a classroom setting they are continuing on matching, following directions, sitting in group settings for longer amounts of time, and his social skills. They said he has come a long way in this and when completing tasks he often looks up to them for approval. Before he would just continue on and not pay attention to there being someone there.
Friday, January 13, 2017
Final Parent Teacher Conference at Spring Lake Elementary
I was a little nervous to meet with Sherry for Dylan's Parent Teacher Conference this time because I had just told her about pulling Dylan out and putting him in Utah Autism Academy, as long as everything went as planned with insurance and being accepted. I told her on the day (1/4) that he had his evaluation when I took him back to school. She was busy with kids as I talked to her, but she seemed bugged by what I was telling her, but also wanting me to make sure he did not go somewhere where Discrete Trial was not an option because she has seen good things with him. I left that day feeling a little sad by her reaction, but at the same time I knew it was a reaction of shock, love and concern.
When I went to Parent Teacher Conference she asked me a bit about it and then said she is on board with my decision and feels that I am making the right decision and one she would also make if she was in my position! She said that she told one of the Aides after our conversation and that Aide went home and looked up UAA and saw that they do Discrete Trial, so that made them feel comfortable with my decision. That started the meeting out on a good note! She said that we have had 2 Summers now where we have seen the regression and so it is obvious that he will benefit from having full time help throughout Summertime. That is my main reason for jumping on this opportunity and not delaying it. I just needed her approval because she knows my son and I know they have had to grown quite an attachment these past 2 years. I have loved him being there and know that is where he needed to be and will never be able to repay her for the work she has put in to Dylan. I am really quite sad to be pulling him out of her class but I know this is where he needs to be going at this time, so it is a rather bittersweet time for us.
Sherry said that Dylan has back to where he was at the end of the school year last year and is starting to really progress. His social interaction is improving immensely! She told a story of having Dylan and another boy sitting by each other on a chair. She sat across from them and threw a ball to the other boy. Dylan reached over to grab it. She threw it back to the other boy. Dylan slumped over in his chair to show his disappointment that he wasn't getting the ball. When she called out his name to throw him the ball, he shot up in excitement! She said that is a huge improvement from when he began because he would just throw the ball in another direction and go about his business.
They are starting to hear a lot of different sounds and more on command. For example, vowels. They will ask him to say, "E" He will say it but usually has a consonant attached. He still does not care much for writing and she said that is something they need to find something to create excitement for him because he just isn't liking it.
I got the call the following day that insurance has approved Dylan's treatment plan. They said we could start school at Utah Autism Academy on Monday, but I asked to wait a week, so that Dylan can get his goodbyes in, or at least give the opportunity for the teachers to tell him goodbye. I would hate just pulling him out of there without some type of closure because he has been there for 2 years and Sherry and Loni have been there the whole time. Those two and the other aides will always have a special place in my heart, because they have worked so hard to get Dylan to where he is. I will give them credit forever and hope that he can continue on from what they have taught him and go further! So beginning on January 23, Dylan's next journey begins!
Saturday, December 17, 2016
Reno Results
We finally got our Reno results and can move forward, problem is getting Dylan to take his medication.
So basically we found out that he has a high percentage of Strep and gut bacteria that is most likely making its way to his brain. He would be a good candidate for GCMAF because he has really high Nagalase levels, but unfortunately that is unavailable at this time. We are supposed to put him on all these supplements as well as an antibiotic that was going to be $2000 to buy here in the US so we ordered it from a Canada Pharmacy for about $90. We are also supposed to give him some kind of Injections that has something to do with Vitamin B12 and put him on Oxygen, but I really don't know why. I asked if we were supposed to meet for the results but they just emailed them instead and then when I asked about the food part and if we need to cut something out was told they don't give that unless you meet. I just don't know what to do with these guys because there is definitely a culture barrier in the way the pass on information, but I don't know that I want to push it much more because we can't even get Dylan to take this medicine. It is all in pill form and well he is 5 and can not, will not swallow a pill. We tried mixing it in things like applesauce and even apple juice and force feeding him, but not working and we don't want to traumatize him more.
I heard about compounding medicine into a cream and letting the body absorb, but they said that wouldn't work. I asked about compounding it into a liquid, but again that won't work. Basically we paid $3000 for good to know information but until we can get him to swallow a pill, there is nothing we can really do about it! So for now, we sit on this information and hopefully down the road we can put it to good use!
Sunday, December 4, 2016
Utah Autism Academy
This past Summer I started looking into options of Autism schools for Dylan because I had the rude reality thrown at me, that the wait lists are LONG! I left messages for a couple of the schools in Utah County but didn't hear back from them for a long time. Finally someone from Utah Autism Academy called me back, after a month or two, and told me that you could sign up for the "Interested List" but that list is anywhere from 1 to 1 1/2 years long. I figured that was fine because I love the preschool he is at and the teacher is my friends Mom so I am very comfortable having him in there. I was more thinking Kindergarten anyway, so I signed him up in June. I got a call in early November saying they had an opening and they had reached Dylan's name, I was completely shocked/caught off guard and was not expecting this call for another year. I felt torn on what to say to them. So I asked a few questions and found out our insurance would not cover it any way, so that made the decision easier. I asked if he could remain on the list and she said that would be fine and they could let us know when another opening was. I figured by that time he would be out of preschool and I would be fine paying what we had to pay.
I text Brandon to tell him of my surprise call and to also forget about it because our insurance didn't pay CRAP for this service. At the same time, I would do anything to get him this service because I think the one on one and more hours including summer time, will help tremendously. I just figured we would continue on Preschool and cross this path when the next opening popped up. They didn't tell me how much it would be but "Quite a bit, as in most families can not afford it on their own with out insurance" we would figure it out when the time comes. Well Brandon called me and we talked and then he called back and said he thinks he has an option for different types of insurance, so to find out what kind of insurance would be good for their services and we would look into it. So I called her back and got a list of insurances. Lets just say this timing could not have been any better and Brandon realizing there were different options has given us hope once again.
I have been talking to UAA and found that the other option Brandon has is going to be great for this service. The timing was perfect because open enrollment was 2 weeks later and so talking to both the insurance company and UAA we have hope and would get him enrolled as soon as they had another opening. We were concerned because this new insurance cost us more out of pocket and we didn't really want to switch if we had to wait another year to year and a half and pay for nothing really. They had a informational meeting for the UAA so we went to ask questions and to meet Linzy that we had been talking to. After the meeting they met one on one with us and said they would look into their list and give us an estimated time of when they could get him in. When an opening comes up, they go down the list and whoever can commit first gets in. They knew how hard we were working on getting things set up just for this opportunity and knew an opening would be coming up the first of the year, so they called all the other prospects and no one else would commit to starting then. I think most people are kind of waiting for Summer time when the class they are in is over and they have to move on to something else. That was our original plan because Dylan regressed over the Summer not having the consistency so that was the time frame I really hoped for when signing him up. Linzy called to see if we decided to go with this new insurance, which we did because SelectHealth pays shit for Autism services we are now finding out, and she was beyond excited!
She told us as long as we will commit to starting him in January then he is next on the list and they will have an opening for him. She wanted to see about starting the preauthorization process now so that he could start right away in January, but because of insurance and the hassle of going between 2 insurances, they want to wait until January. So I don't know his exact starting time, but I am beyond thrilled that we are getting him in here! I am also beyond saddened to pull him out of his preschool because that is all we have known for the past 2 years and I love it and I love the teachers he has had. I like to think that they have a bond with Dylan and will be sad to lose him, but I hope they understand this is for his future!
As hard as the last 2 1/2ish years have been on us, things have seemed to fall in place. First, his preschool! As soon as I saw Sherry, my fears were put to ease. I knew she had a son on the spectrum and that she could handle him. I have had nothing but good experiences with her and her class. Now this! The timing was perfect! Had they not called when they did, enrollment would have been over and we would be waiting another year or so to switch insurance companies. So basically that would be another year or longer of not having this one on one intensive services. From what I understand, ABA therapy can be at least $50,000 a year or more, so insurance is CRUCIAL. I love that they have worked so well with us and already I feel they love my son and haven't even met him! Let's just hope(which I think it will) this experience remains very positive as it has began! Between (hopefully) getting Dylan on this medication for the Reno Dr and getting him in this program we have high hopes for what's to come his way this year!
I text Brandon to tell him of my surprise call and to also forget about it because our insurance didn't pay CRAP for this service. At the same time, I would do anything to get him this service because I think the one on one and more hours including summer time, will help tremendously. I just figured we would continue on Preschool and cross this path when the next opening popped up. They didn't tell me how much it would be but "Quite a bit, as in most families can not afford it on their own with out insurance" we would figure it out when the time comes. Well Brandon called me and we talked and then he called back and said he thinks he has an option for different types of insurance, so to find out what kind of insurance would be good for their services and we would look into it. So I called her back and got a list of insurances. Lets just say this timing could not have been any better and Brandon realizing there were different options has given us hope once again.
I have been talking to UAA and found that the other option Brandon has is going to be great for this service. The timing was perfect because open enrollment was 2 weeks later and so talking to both the insurance company and UAA we have hope and would get him enrolled as soon as they had another opening. We were concerned because this new insurance cost us more out of pocket and we didn't really want to switch if we had to wait another year to year and a half and pay for nothing really. They had a informational meeting for the UAA so we went to ask questions and to meet Linzy that we had been talking to. After the meeting they met one on one with us and said they would look into their list and give us an estimated time of when they could get him in. When an opening comes up, they go down the list and whoever can commit first gets in. They knew how hard we were working on getting things set up just for this opportunity and knew an opening would be coming up the first of the year, so they called all the other prospects and no one else would commit to starting then. I think most people are kind of waiting for Summer time when the class they are in is over and they have to move on to something else. That was our original plan because Dylan regressed over the Summer not having the consistency so that was the time frame I really hoped for when signing him up. Linzy called to see if we decided to go with this new insurance, which we did because SelectHealth pays shit for Autism services we are now finding out, and she was beyond excited!
She told us as long as we will commit to starting him in January then he is next on the list and they will have an opening for him. She wanted to see about starting the preauthorization process now so that he could start right away in January, but because of insurance and the hassle of going between 2 insurances, they want to wait until January. So I don't know his exact starting time, but I am beyond thrilled that we are getting him in here! I am also beyond saddened to pull him out of his preschool because that is all we have known for the past 2 years and I love it and I love the teachers he has had. I like to think that they have a bond with Dylan and will be sad to lose him, but I hope they understand this is for his future!
As hard as the last 2 1/2ish years have been on us, things have seemed to fall in place. First, his preschool! As soon as I saw Sherry, my fears were put to ease. I knew she had a son on the spectrum and that she could handle him. I have had nothing but good experiences with her and her class. Now this! The timing was perfect! Had they not called when they did, enrollment would have been over and we would be waiting another year or so to switch insurance companies. So basically that would be another year or longer of not having this one on one intensive services. From what I understand, ABA therapy can be at least $50,000 a year or more, so insurance is CRUCIAL. I love that they have worked so well with us and already I feel they love my son and haven't even met him! Let's just hope(which I think it will) this experience remains very positive as it has began! Between (hopefully) getting Dylan on this medication for the Reno Dr and getting him in this program we have high hopes for what's to come his way this year!
Costco
I took Dylan and Desi to Costco the other day and as we were checking out the cashier tried making small talk with them. Dylan just turned away and the lady was like, "Well Ok." You could tell she thought he was being a little rude because obviously he is old enough to make conversation. My mind raced because I didn't want her thinking he is a rude little boy, because he is not, but I didn't want to make her feel dumb either. I spoke up and said, "he doesn't talk."
She was like, "Oh, he really doesn't" (but she was sincere about it) so I said, "Yes, he is Autistic and nonverbal, but oh how we would love to hear his sweet voice." I told her I didn't want her thinking he was being a rude little kid, but that is why he didn't respond. She was very sincere and I don't think I made her feel bad so I think my job was done.
I figured this day would come because when they are little and don't respond it is no big deal, but now that he is obviously older and should at least respond with eye contact then people will notice more. I love that this was a positive experience and hopefully they continue this way for a long time.
She was like, "Oh, he really doesn't" (but she was sincere about it) so I said, "Yes, he is Autistic and nonverbal, but oh how we would love to hear his sweet voice." I told her I didn't want her thinking he was being a rude little kid, but that is why he didn't respond. She was very sincere and I don't think I made her feel bad so I think my job was done.
I figured this day would come because when they are little and don't respond it is no big deal, but now that he is obviously older and should at least respond with eye contact then people will notice more. I love that this was a positive experience and hopefully they continue this way for a long time.
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