Hi Everyone,
Thank you everyone for all your love and support during all this. It really means so much to us, and brings us comfort as we go through the trials and tribulations of this entire situation. Will has appropriately deemed this "The Curious Case of Aiden Lesnick". :)
Last Wednesday, Aiden started private speech therapy. For the first session, it went well, though Aiden was very reserved. However, IMMEDIATELY following the session, he started talking like crazy. More than he was. It was quite interesting. Over the weekend he continued to talk, label, and surprise us in so many ways. Yesterday (Monday) was Aiden's second private Speech Therapy session. OH MY GOODNESS what a difference!!! He was amazing. I won't describe it too much yet because I have a letter from the therapist which describes it so beautifully. Yesterday, we were sort of gearing up mentally for the meeting scheduled today (Tuesday) with Early Intervention Services. In preparation for that meeting, I thought it would be helpful if Aiden's therapist Jane wrote a brief letter detailing Aiden's weird and rapid progress. Mainly because the meeting we attended today was reporting on the Aiden they assessed 1 month ago. An entirely DIFFERENT Aiden. Here are some of the things she said:
"I have seen Aiden Lesnick for two, 30 minute speech-language therapy sessions. If I didn’t know better, I would have thought that I was working with two different children.
During the first session, Aiden did not greet me and used very little eye contact. The few words that he used were all imitated and were typical of echolalia. Aiden did not comment on things in his environment and he did not make any requests. Aiden’s attention span for tasks was very short except when we played with cars. Aiden had a very flat affect—showed very little emotion.
During the second session, Aiden came in with a smile, looked at me, and said “Hi” when he was given a prompt. When given a verbal prompt, Aiden was able to attend to tasks, name common objects, and use short phrases and sentences. Aiden made a few requests and said a few things spontaneously. Aiden’s demeanor was very different than it was in the first session. His eye contact was much improved and he smiled and clapped his hands appropriately during songs and a game of bowling."
She does go on in the letter to say that he is still speech/language delayed and will benefit highly with more help of course.
So today we went to our Early Intervention meeting. In attendence was the developmental specialist who assessed Aiden, a speech therapist, and a staffing specialist. Everyone was so warm and kind. They first reported on Aiden's results, but acknowledged that they understand he is different now. Then they read the letter that was written by Jane, our private speech therapist. With all that new knowledge they re-wrote (with us) new goals for Aiden that are more appropriate with his new skills that he has re-aquired. They explained to us that Aiden has qualifed for FREE speech therapy 2x per week for 30 minutes. He has also qualified for part time Developmentaly Delayed school. We did find out that free speech is a Group Speech environment, not 1:1. SO... we are SO happy that he is getting the 1:1 therapy already through the private practice. We intend to keep that going along with the free group therapy. We were offered two options. 1) just speech therapy - this would be done at East Lake Elementary where Anna goes to school. 2) Developmentally Delayed school at Bonneville Elementary where he would get speech during the school time. This would be 2 1/2 hours per day. Not a full day each day.
Our dilemma really is towards the Developmentally Delayed school. All the therapists agree that children learn from their immediate environment. We are concerned that if we put Aiden in a classroom with children that may have more severe delays or behavioral problems, that this could affect him negatively. At the same time, it would be a small group setting where Aiden would get WAY more attention and focus. hmm... We decided to leave the meeting without deciding yet. This means we have to go back downtown to sign the papers when we figure out what we are doing. We really feel we want to OBSERVE the actual class Aiden would be joining at Bonneville Elementary before we agree to put him there.
So, Will and I went to Panera for lunch to talk things over, and just de-compress. Sitting next to us was Anna's Sunday School teacher. She said hello, and engaged us in conversation, and asked us about Aiden. Her friend sitting opposite her contributed to the conversation by letting us know her son had serious delays a few years ago, and goes to a school nearby called UCP (http://www.ucpcfl.org/). She spoke so highly of the school, and then told us that it is a charter school, and if Aiden has qualified through Orange County (as he has) then it would be FREE to send him there! Oh my, something else to investigate and ponder. Anyone find it strange and interesting that we ended up next to this woman in Panera RIGHT AFTER our meeting at Early Intervention services. Wow! She gave us their business card which she had with her, and Will and I decided to run over there before picking up Aiden from school. We went in, and requested a referral to speak with someone there. We were told that we would be called back within 48 hours.
We picked up Aiden, who had a pretty good day today at school. He just LOVES it there. We spoke with his teacher who loves having Aiden in class, but did express that sometimes she wishes she could do MORE for him, but with the class size and her lack of qualifications that folks would have at the special school, she sometimes is frustrated. At the same time, Aiden doesn't "stand out" often in class as "different", and for the most part does very well there. We did discuss the fact that on Mon/Wed/Fri at Aiden's current school there are only 5 children in the class. So.. we could move days and have him in a smaller class setting so the teacher can work more closely with him. hmm....
While we were driving to pick up Anna from school, we got our call from UCP. 48 hours? More like 30 minutes! Wow, quite impressive!!! They asked some questions, and explained that they are having a meeting on Friday and will find out if there is currently space for Aiden. If so, we'll go in and speak with them.
We also spoke with the staffing person over at Bonneville Elementary. We arranged to go TOMORROW to observe the class that Aiden would be in if we chose this route. So.. we'll see what we think about that option tomorrow. So much to think about!
As I see it, we have 4 options:
1) Pass on the special school, keep him in his current school, and have therapy 4x per week for 30 minutes (2 group, 2 private)
2) Accept special school at Bonneville where he would get group therapy 2x per week, while continuing private therapy 2x per week.
3) If an option, send him to UCP where he would get therapy 2x per week there, while continuing private therapy 2x per week.
4) Pass on special school, but change days at his current school for smaller class size, and have therapy 4x per week for 30 minutes (2 group, 2 private)
To be honest, we have NO idea what to do. We really don't. We are torn. We are confused. Aiden is changing so much everyday, that we really don't know what would be best for him. We want someone to just give us an answer, but the fact of the matter is, there is no right or wrong answer.
If there is anyone reading this who has any information on any of this, or the different schools, opinions and feedback are welcome.
We don't want to wait too long to make a decision, but we want it to be the right one.
A side note: Anna's Sunday school teacher couldn't say enough about Anna. She can't believe after only being in Sunday school just a few weeks, that Anna virtually knows the entire Hebrew Alphabet. Anna has studied that completely on her own, and is pretty much caught up to where the rest of the kids are at who have been going all year. That's our girl!
Sorry this one was so long, but I guess I had a lot to say. :)
More soon.
Love, Holly
Tuesday, February 24, 2009
Tuesday, February 17, 2009
Love is in the air....
I first want to wish all my friends and family a belated Valentines Day. We had a nice weekend. Will and I went to one of our favorite restaurants, Colorado Fondue on Friday night to celebrate V-day. Here's a picture before we left.
We had quite the family weekend after that. First a birthday party to go to. Then we went to visit my mom, where we of course had to pratice our Guitar Hero skills. Then we took the kids for some Valentines Day ice cream.
Then on Sunday, Anna and I had a date at the Orlando Repatory Theatre to see "Junie B. Jones and a little Monkey Business". I buy season tickets for her and I each year for shows I think she'll enjoy. This one was a sure fire hit! And.. the most exciting part.... Anna has always been quite tentative and shy to go meet the actors for their "meet and greet" after the show. She told me a few months ago that when she turned 7, she would do it. Well, this was the show she decided to go for it. So, after the play was over, we waited in line to meet "Junie B. Jones" and got a picture.
Sunday night we had our friends over for dinner and hanging out so that was fun!
The week has begun and on the Aiden front, we are scheduled to start speech therapy tomorrow. I'm SOOOOO relieved and look forward to getting started. I spent a whle on the phone with our therapist today and she seems quite baffled (along with everyone else), but also very excited to meet Aiden and help him the best she can. :) YEY!
Well, I believe that's all I've got for now! Until next time!
Love,
Holly
We had quite the family weekend after that. First a birthday party to go to. Then we went to visit my mom, where we of course had to pratice our Guitar Hero skills. Then we took the kids for some Valentines Day ice cream.
Then on Sunday, Anna and I had a date at the Orlando Repatory Theatre to see "Junie B. Jones and a little Monkey Business". I buy season tickets for her and I each year for shows I think she'll enjoy. This one was a sure fire hit! And.. the most exciting part.... Anna has always been quite tentative and shy to go meet the actors for their "meet and greet" after the show. She told me a few months ago that when she turned 7, she would do it. Well, this was the show she decided to go for it. So, after the play was over, we waited in line to meet "Junie B. Jones" and got a picture.
Sunday night we had our friends over for dinner and hanging out so that was fun!
The week has begun and on the Aiden front, we are scheduled to start speech therapy tomorrow. I'm SOOOOO relieved and look forward to getting started. I spent a whle on the phone with our therapist today and she seems quite baffled (along with everyone else), but also very excited to meet Aiden and help him the best she can. :) YEY!
Well, I believe that's all I've got for now! Until next time!
Love,
Holly
Wednesday, February 11, 2009
A few more birthday pictures
A friend just shared some pictures that she took at Aiden's birthday party. Thought I would post here. :) Enjoy!
Tuesday, February 10, 2009
more on the Aiden front....
Okay, I have some form of an update on Aiden.. I'll address that first, and then share some pictures from his birthday party.
Today we took Aiden back to the private speech therapist to try again for that initial assessment. Aiden was definitely more willing to work today, thank goodness. The first 10 minutes he sat pretty quiet and shy.. then he started to open up and answer questions, or at least point to the pictures, etc. There was a period of about 15 minutes where Aiden was doing great. He even spoke in 4 and 5 word sentences to the therapist. We were really happy about that because she could really hear his speech. She also just observed him in general and noted that he makes great eye contact, smiles and interacts, follows directions for a period of time, and scans the pages well to find the correct answers. He did not tick AT ALL, and hasn't been for a bunch of days now.
At the end... she talked to us, and we realized we have THREE different things we are looking at:
1) She concurs that whatever happened to Aiden a month ago is medical. She feels this is pretty obvious, which is the same thing the other therapists said at our other assessment. So, we must push forth with trying to get some answers that way. The 24 hour EEG is in our future, more bloodwork, and a possible spinal tap.
2) Regardless of what is going on medically with Aiden, she feels he should be assessed by a behavioralist. Why? She thinks Aiden is possibly CHOOSING to not answer questions at times and choosing when to comply and not to comply. She said Aiden displayed today that he knows the answers in his head. What does this mean? Well, that Aiden is strong willed, and if something seems "hard", he just says "forget it" and would rather not try, and gives up. She thinks a behavioralist could really help us with this area.
3) Today the therapist let us know that Aiden's speech is FINE. She said his speech is completely clear and intelligable, and the few letters that he struggles with are completely age appropriate. Yey, great news! BUT.. she said his area of struggle and delay is in the language/communication area. So this still falls in the realm of needed Speech Therapy - just not specifically to work on his speech, but more so how he processes his thoughts into forming his language. (hope this makes sense). Again, this goes back to helping his behavior from his frustration.. so we can get somewhere on this end.
So... we are going to set up a HOME assessment with a behavioralist. Apparantly this team also has a psychologist on the team as well, so if we need that it's there for us. Unfortunately, this is the first "service" that is NOT at all covered by insurance. Scary.. but we will figure something out.
As I have said before, right now we are watching Aiden in developmental fast forward. This kid is catching up on what he lost each and every day. He is "recovering" from whatever it was that happened to him. We feel SOOOO blessed by this. The question is WHAT HAPPENED?? This is truly the scariest part of this whole thing.
Okay, so Aiden's birthday party. A few weeks ago, Aiden wouldn't have handled it very well. But WOW did he have a good time. He got right into the spirit. He greeted some of his guests by name (his greetings and salutations are coming back, yey!). He sang along with every song I did. He danced, played with his friends, sang along to Happy Birthday, blew out his candles, ate his cake and was the happiest birthday boy on earth that day! Our friend Paul made the cake as you will see below. Aiden LOVES any transportation.. so his cake was a racecar. So cool!!!!! So.. here are some pictures below to enjoy. I'll be back with another update soon!
Love, Holly
Today we took Aiden back to the private speech therapist to try again for that initial assessment. Aiden was definitely more willing to work today, thank goodness. The first 10 minutes he sat pretty quiet and shy.. then he started to open up and answer questions, or at least point to the pictures, etc. There was a period of about 15 minutes where Aiden was doing great. He even spoke in 4 and 5 word sentences to the therapist. We were really happy about that because she could really hear his speech. She also just observed him in general and noted that he makes great eye contact, smiles and interacts, follows directions for a period of time, and scans the pages well to find the correct answers. He did not tick AT ALL, and hasn't been for a bunch of days now.
At the end... she talked to us, and we realized we have THREE different things we are looking at:
1) She concurs that whatever happened to Aiden a month ago is medical. She feels this is pretty obvious, which is the same thing the other therapists said at our other assessment. So, we must push forth with trying to get some answers that way. The 24 hour EEG is in our future, more bloodwork, and a possible spinal tap.
2) Regardless of what is going on medically with Aiden, she feels he should be assessed by a behavioralist. Why? She thinks Aiden is possibly CHOOSING to not answer questions at times and choosing when to comply and not to comply. She said Aiden displayed today that he knows the answers in his head. What does this mean? Well, that Aiden is strong willed, and if something seems "hard", he just says "forget it" and would rather not try, and gives up. She thinks a behavioralist could really help us with this area.
3) Today the therapist let us know that Aiden's speech is FINE. She said his speech is completely clear and intelligable, and the few letters that he struggles with are completely age appropriate. Yey, great news! BUT.. she said his area of struggle and delay is in the language/communication area. So this still falls in the realm of needed Speech Therapy - just not specifically to work on his speech, but more so how he processes his thoughts into forming his language. (hope this makes sense). Again, this goes back to helping his behavior from his frustration.. so we can get somewhere on this end.
So... we are going to set up a HOME assessment with a behavioralist. Apparantly this team also has a psychologist on the team as well, so if we need that it's there for us. Unfortunately, this is the first "service" that is NOT at all covered by insurance. Scary.. but we will figure something out.
As I have said before, right now we are watching Aiden in developmental fast forward. This kid is catching up on what he lost each and every day. He is "recovering" from whatever it was that happened to him. We feel SOOOO blessed by this. The question is WHAT HAPPENED?? This is truly the scariest part of this whole thing.
Okay, so Aiden's birthday party. A few weeks ago, Aiden wouldn't have handled it very well. But WOW did he have a good time. He got right into the spirit. He greeted some of his guests by name (his greetings and salutations are coming back, yey!). He sang along with every song I did. He danced, played with his friends, sang along to Happy Birthday, blew out his candles, ate his cake and was the happiest birthday boy on earth that day! Our friend Paul made the cake as you will see below. Aiden LOVES any transportation.. so his cake was a racecar. So cool!!!!! So.. here are some pictures below to enjoy. I'll be back with another update soon!
Love, Holly
Saturday, February 7, 2009
Our Aiden is four years old!
Our little boy is officially FOUR years old. We can't believe it!
On Thursday (Aiden's birthday), we had two appointments for him. The first was his 4 year well visit with our pediatrician. We were glad to be there to update him on what has been going on since he referred us to the neurologist. He is just another one that is simply perplexed as to what is going on with Aiden. Aiden however, was NOT happy to be there. I think he has finally made the association that visiting the doctor means getting poked, prodded and messed with. It was his birthday, so he had every reason to object! :) Anyway, he definitely was in a "mood".
Then we took him for his 1:30pm Speech therapy assessment with the private practice. Again, he didn't want to have any part in it AT ALL. So.... we are scheduled to try a re-do assessment on Tuesday morning. We really hope Aiden is up for it, so we can get him started on speech therapy.
Once a month Anna's dance friends and the moms go out for pizza night. It just so happened that pizza night this month happened on Aiden's birthday. Usually boys are not allowed, but we made an exception and celebrated Aiden's birthday with pizza and cupcakes!
It is now Saturday night... and today was a great day. The last few days Aiden was not really a happy camper. We didn't see him regress neccessarily, but at the same time, he was ticking a bit and very grumpy. I actually think he was a bit under the weather. Today however, was a GREAT day!! He has now started to greet certain people with hellos, he's doing a lot more talking in general. He is starting to answer questions here and there. Again definitely moving in a forward direction from where he was when this whole thing started.
Tomorrow is his birthday party which I decided to keep pretty small and calm as not to have him get overstimulated and overtired. I hope he has a good time and is up for it tomorrow. I'm doing some Kindermusik fun at the party which is his favorite thing in the whole world. So.. lots of pictures to come from the party.
I'm really hoping that on Tuesday we can get somewhere with the private therapy. So keep your prayers going because I think they are working. Our little guy IS doing better (of course we still have NO idea what is causing this).
Today we had a nice day at a local event where the Orlando Philharmonic played an outside concert of Peter and the Wolf. We met up with Rachael and her kids, and Will's parents are visiting this weekend. We had a great time, and Anna and Aiden LOVED it! Here are some fun pictures from that! Another birthday party update coming soon, and then of course more news about Aiden's tests and therapy as it comes in.
Love, Holly
On Thursday (Aiden's birthday), we had two appointments for him. The first was his 4 year well visit with our pediatrician. We were glad to be there to update him on what has been going on since he referred us to the neurologist. He is just another one that is simply perplexed as to what is going on with Aiden. Aiden however, was NOT happy to be there. I think he has finally made the association that visiting the doctor means getting poked, prodded and messed with. It was his birthday, so he had every reason to object! :) Anyway, he definitely was in a "mood".
Then we took him for his 1:30pm Speech therapy assessment with the private practice. Again, he didn't want to have any part in it AT ALL. So.... we are scheduled to try a re-do assessment on Tuesday morning. We really hope Aiden is up for it, so we can get him started on speech therapy.
Once a month Anna's dance friends and the moms go out for pizza night. It just so happened that pizza night this month happened on Aiden's birthday. Usually boys are not allowed, but we made an exception and celebrated Aiden's birthday with pizza and cupcakes!
It is now Saturday night... and today was a great day. The last few days Aiden was not really a happy camper. We didn't see him regress neccessarily, but at the same time, he was ticking a bit and very grumpy. I actually think he was a bit under the weather. Today however, was a GREAT day!! He has now started to greet certain people with hellos, he's doing a lot more talking in general. He is starting to answer questions here and there. Again definitely moving in a forward direction from where he was when this whole thing started.
Tomorrow is his birthday party which I decided to keep pretty small and calm as not to have him get overstimulated and overtired. I hope he has a good time and is up for it tomorrow. I'm doing some Kindermusik fun at the party which is his favorite thing in the whole world. So.. lots of pictures to come from the party.
I'm really hoping that on Tuesday we can get somewhere with the private therapy. So keep your prayers going because I think they are working. Our little guy IS doing better (of course we still have NO idea what is causing this).
Today we had a nice day at a local event where the Orlando Philharmonic played an outside concert of Peter and the Wolf. We met up with Rachael and her kids, and Will's parents are visiting this weekend. We had a great time, and Anna and Aiden LOVED it! Here are some fun pictures from that! Another birthday party update coming soon, and then of course more news about Aiden's tests and therapy as it comes in.
Love, Holly
Tuesday, February 3, 2009
Good day for Aiden!!!
Today is definitely a good "Aiden" day. It really is like we are watching our son in "Developmental Fast-Forward".
First, Aiden slept really well last night and woke up reasonably 0n time to make it to school. We know that when this happens, it's going to be a better day, than either a broken sleep or LOOOONG sleep (like the one he had the night his episode happened).
Aiden's teacher told me about something that happened today that shocked them. I guess the kids were asked to clean up and whoever helped would get 2 M&M's to eat. After the cleaning session and they were in their circle, Miss Kelly went to each child and thanked them for putting away this or that. She got to Aiden and said "Aiden, I didn't see you put anything away, did you?". He replied with, "I put away the doll". They were SOOO happy to hear him speak clearly, and also express himself. Of course he got the M&M's. :)
Then after I picked him up from school, we had a bit of time before we had to pick up Anna.. so I took him to a nearby playground to play for a few minutes. I told him we had to get Anna soon. He said, "I want to go play". Again, he amazed me!!!! He just hasn't been expressing himself like that at all.
Just a week ago, Aiden was barely speaking.. and now he is sporatically using 5 word sentences. wowie!!!!
He is still quite quiet most of the time, and sometimes still gets very frustrated.. but boy, what a difference a few days make. Sooooo strange that he has come this far without any therapy or anything!
So....... tomorrow is AIDEN'S 4th BIRTHDAY!! I can't believe that!! We do have an appt. with our pediatrician. Then we are going to the private therapy assessment to hopefully line up some speech therapy. I'll keep posting...
Love, Holly
First, Aiden slept really well last night and woke up reasonably 0n time to make it to school. We know that when this happens, it's going to be a better day, than either a broken sleep or LOOOONG sleep (like the one he had the night his episode happened).
Aiden's teacher told me about something that happened today that shocked them. I guess the kids were asked to clean up and whoever helped would get 2 M&M's to eat. After the cleaning session and they were in their circle, Miss Kelly went to each child and thanked them for putting away this or that. She got to Aiden and said "Aiden, I didn't see you put anything away, did you?". He replied with, "I put away the doll". They were SOOO happy to hear him speak clearly, and also express himself. Of course he got the M&M's. :)
Then after I picked him up from school, we had a bit of time before we had to pick up Anna.. so I took him to a nearby playground to play for a few minutes. I told him we had to get Anna soon. He said, "I want to go play". Again, he amazed me!!!! He just hasn't been expressing himself like that at all.
Just a week ago, Aiden was barely speaking.. and now he is sporatically using 5 word sentences. wowie!!!!
He is still quite quiet most of the time, and sometimes still gets very frustrated.. but boy, what a difference a few days make. Sooooo strange that he has come this far without any therapy or anything!
So....... tomorrow is AIDEN'S 4th BIRTHDAY!! I can't believe that!! We do have an appt. with our pediatrician. Then we are going to the private therapy assessment to hopefully line up some speech therapy. I'll keep posting...
Love, Holly
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