March is over, thank goodness! While many celebrated with pranks, and jokes, I celebrated April 1st with a big sigh. March was full of ups and downs. Thomas was given new letters for his alphabet soup, which has been very good for me facilitate getting services that are a better fit for him, but they also left us with some unanswered questions. We renewed his IEP, and agreed that he needed even more evaluations from the school. Thomas has had some great successes at school, and he's had some old "bad" habits show up and he's developed a couple of new ones. And finally he was given a place in the coveted social group at the Autism center that he was evaluated at in Feb.
So the new diagnosis of ADHD and anxiety has answered a ton of questions for us, but it has also left us with a few new ones. When handed something new, like a new diagnosis, my first coping mechanism is to turn to research so I have been reaching everything I can on children with ADHD. In my reading I see so many things in Thomas that I was seeing as red flags for Autism, and I now understand why autism is often misdiagnosed as ADHD and visa versa. The overlaps in social behavior are amazing! So it potentially explains a huge number of Thomas's social integration problems. We are still on the waiting list for another set of testing to rule out another diagnosis (that I am intentionally being vague about,) and we will be resetting for ASD in February 2014 because it couldn't be eliminated as a diagnosis.
The other good that came out of the ADHD diagnosis is that the care team at Thomas' school seem to, all of a sudden, know what to do to help him. Instead of feeling like they were at a loss because his previous only diagnosis was SPD, it's like a lightbulb lit for them and they all of a sudden get it. "Oh, ADHD, I know what that is and we know what to do for that." As frustrating as that reality is, it is a reality. They know what to do now, or at least what to try and so there is this flurry of activity surrounding Thomas getting the new services in place at school.
This leads us to the IEP. Thomas' was up for review in the middle of March, and when I sent the
report from the Autsim Center's evaluations of Thomas the special Ed team had to rewrite the entire IEP. In doing this, and in reviewing the report (which was 30 pages long and extremely detailed) the
school psychologist has decided to re-evaluate Thomas in several areas. These areas include social, behavioral, academic, emotional, health and communication. These results will effect his IEP again. So I am 98% sure we'll have at least one more IEP meeting before school end. It will be very interesting to see how these changes affect Thomas' behavior at school. One of the changes that we've seen is that Thomas is hitting more in school, but instead of writing him up for it, his teacher has arranged classroom transitions around the behavior. This seems to be helping.
There was one incident that I found a bit upsetting. Thomas got angry in class and ran out of the room. His teacher found him within minutes and had him go to the office to cool down. He had a conference with the principal where she explained why he needed to stay in his classroom, mainly safety reasons. And then she wrote him up for it. Yep, a disciplinary report because Thomas needed to get away from other people so badly that he ran away from the classroom. He grabbed a chair and put himself into the corner in the hallway. The principal told me over the phone that it was several/many minutes before he was found (his teacher said it was 2-3 tops.) so she had to write him up. Sigh. Now I understand the safety issues, I understand having to go to the office. I do not understand a write up. I think that him walking away instead of hitting should have been commended, instead it was punished. That is a hard one to explain to him.
Thomas being in social groups at school four days a week is a very good thing. The more social interaction "training" he can get the better. There are two different groups, one for friendship and one for anger management. On too of that, Thomas was given a place in a social group at the Autism Center. He had his observation a couple weeks ago, in which he cried and sobbed for the first hour of the 1.5 hour session. He did pull it together at the end, and had been asking to go back ever since. He really loved the kids and the therapists once he let himself relax enough to get involved in their activities.
Yesterday was his first session in the social group that will meet once a week, for 1.5 hours. He had a blast, and the were no tears. He was so happy to see that many of the same kids were in this session, so he felt comfortable from the beginning. I really think this group will be good for him, and I'm guessing he will participate in several sessions.
This has been a whirlwind of a post, and that even goes with the last couple of weeks. A lot of it is a blur, I am definitely still trying to wrap my brain around all the changes. I can only imagine what it must be like for Thomas, who doesn't deal with transition well.
Tuesday, April 2, 2013
Saturday, March 16, 2013
One of Those Days
I'm sitting here in the post bedtime quiet, listening to the fish tank bubble, smelling my hot tea, and thinking over the day. Days like today are the kind of days that make even the really great parents feel like they're missing something. Today was one of those count down to bedtime, wonder how you're going to make it through, begging for mercy kind of days.
It all started innocently enough, Thomas woke up too early, was sent back to his room until the "bunny clock" told him he could get up (turns out it wasn't set right,) only to return a few minutes later to announce that the numbers said 6:53 and that should be late enough to be awake. He of course was right, so I let him take his iPad to his room, his favorite "big boy weekend" thing to do, and he let me sleep until 9am. Unheard of!! I thought, what a wonderful start to the day!!
We went downstairs for breakfast, to watch Saturday cartoons (on Netflix) and snuggle on the couch. Josh got up and ran out for coffee and pastries, and we seemed to settle into our usual Saturday routine.
I did, however, notice that Thomas was a bit over stimulated. So we decided to turn off the cartoons for a bit before his swimming lesson. At noon-ish, after his pastry and apple juice we headed for the swim club. This is where our day took a 180, and we all spent the next 7 hours on the verge of crying, panic, or just plain melting down. Thomas decided that his swimming goggles didn't fit, were broken, and just plain were the world's largest torture device EVER. Of course he wouldn't get into the pool without them either, so his first meltdown of the day ensued...Full blast, tears, hitting, pulling, screaming, fighting meltdown. It was painful as his parent to watch, and I'm sure confusing for his swim teacher since Thomas is usually so excited about his lesson. We decided to take Thomas home, and try again later since his wonderful teacher offered us a spot later in the afternoon.
As we were leaving the swim club Thomas said he was hungry and wanted to go to get breakfast, so we headed to the small community center near home. The have a nice little cafe that has hash-browns that Thomas loves. He ate, and asked if we could go look for new goggles to replace the ones that were "broken." (they aren't, I assure you.) We agreed since we thought it would help give him the reassurance that he needed for his second try at swimming later in the afternoon.
We went to the sporting goods store and Thomas tried on EVERY SINGLE pair of goggles for kids/youth that the place had in stock, and several models he tried on twice. None of them lived up to Thomas' expectations, or particular sensory needs. In hindsight, I should have realized that Thomas was practically wearing a neon sign that read, "Not Going to Happen Today!!" since he was hiding in racks, seeking a quiet place and cringing and crying with goggles that just didn't "feel right." I don't know if it was my stubbornness, my own anxiety, or what, but I couldn't read him today.
I called and cancelled the "second chance" swim lesson and we headed home to just try to relax for the rest of the day.
I must have lost my mind, but 2 hours later I got the "brilliant" idea to take Thomas out again. This time to the game store and comic store. He again was all over the place, running, not listening, touching everything. And again, I found myself on the the edge of my own meltdown. My heart was racing, I was sweating and basically entering panic attack zone. So I made the decision that it was time to go home. On the way, we decided to stop for take out for dinner. We sent Josh in to get the food, and Thomas lost it! He wanted to go in too, but I knew that for my sanity, and his safety that it would be a bad idea. Do I sat in the car while he told me how much he hated me, how much of a bad mom I am, etc. Thankfully it was short lived, though a bit painful since he was kicking me in the back through the seat throughout his meltdown.
We spent the rest of the evening eating dinner and encouraging quiet independent play. He did well at bedtime routine, and fell asleep quickly. I think the day was as exhausting for him as it was for us. I'm glad that he's finally resting, that the day is at a close. As a very good friend told me today, "tomorrow is another day." I hope tomorrow brings 10 times more joy and 100 times more laughter. After today we could all use it.
It all started innocently enough, Thomas woke up too early, was sent back to his room until the "bunny clock" told him he could get up (turns out it wasn't set right,) only to return a few minutes later to announce that the numbers said 6:53 and that should be late enough to be awake. He of course was right, so I let him take his iPad to his room, his favorite "big boy weekend" thing to do, and he let me sleep until 9am. Unheard of!! I thought, what a wonderful start to the day!!
We went downstairs for breakfast, to watch Saturday cartoons (on Netflix) and snuggle on the couch. Josh got up and ran out for coffee and pastries, and we seemed to settle into our usual Saturday routine.
I did, however, notice that Thomas was a bit over stimulated. So we decided to turn off the cartoons for a bit before his swimming lesson. At noon-ish, after his pastry and apple juice we headed for the swim club. This is where our day took a 180, and we all spent the next 7 hours on the verge of crying, panic, or just plain melting down. Thomas decided that his swimming goggles didn't fit, were broken, and just plain were the world's largest torture device EVER. Of course he wouldn't get into the pool without them either, so his first meltdown of the day ensued...Full blast, tears, hitting, pulling, screaming, fighting meltdown. It was painful as his parent to watch, and I'm sure confusing for his swim teacher since Thomas is usually so excited about his lesson. We decided to take Thomas home, and try again later since his wonderful teacher offered us a spot later in the afternoon.
As we were leaving the swim club Thomas said he was hungry and wanted to go to get breakfast, so we headed to the small community center near home. The have a nice little cafe that has hash-browns that Thomas loves. He ate, and asked if we could go look for new goggles to replace the ones that were "broken." (they aren't, I assure you.) We agreed since we thought it would help give him the reassurance that he needed for his second try at swimming later in the afternoon.
We went to the sporting goods store and Thomas tried on EVERY SINGLE pair of goggles for kids/youth that the place had in stock, and several models he tried on twice. None of them lived up to Thomas' expectations, or particular sensory needs. In hindsight, I should have realized that Thomas was practically wearing a neon sign that read, "Not Going to Happen Today!!" since he was hiding in racks, seeking a quiet place and cringing and crying with goggles that just didn't "feel right." I don't know if it was my stubbornness, my own anxiety, or what, but I couldn't read him today.
I called and cancelled the "second chance" swim lesson and we headed home to just try to relax for the rest of the day.
I must have lost my mind, but 2 hours later I got the "brilliant" idea to take Thomas out again. This time to the game store and comic store. He again was all over the place, running, not listening, touching everything. And again, I found myself on the the edge of my own meltdown. My heart was racing, I was sweating and basically entering panic attack zone. So I made the decision that it was time to go home. On the way, we decided to stop for take out for dinner. We sent Josh in to get the food, and Thomas lost it! He wanted to go in too, but I knew that for my sanity, and his safety that it would be a bad idea. Do I sat in the car while he told me how much he hated me, how much of a bad mom I am, etc. Thankfully it was short lived, though a bit painful since he was kicking me in the back through the seat throughout his meltdown.
We spent the rest of the evening eating dinner and encouraging quiet independent play. He did well at bedtime routine, and fell asleep quickly. I think the day was as exhausting for him as it was for us. I'm glad that he's finally resting, that the day is at a close. As a very good friend told me today, "tomorrow is another day." I hope tomorrow brings 10 times more joy and 100 times more laughter. After today we could all use it.
Monday, March 4, 2013
Social Group
Now that we have had a few days to process and absorb the new letters in Thomas' alphabet soup, we are starting to move forward. First step, Social Group.
This isn't Thomas' first venture into the world of social group, he did a 12 week social group program at his OT's office last fall. It ended with mixed results. He liked the kids well enough, but I don't think that he actually learned much in the group. He didn't come out of it more able to deal with his social shortcomings, or more able to use his strengths. He had fun, so it wasn't a complete waste of 3 months.
This time I hope will be different. I feel that the clinic he will be doing his group in is more equipped to help Thomas find his positives and build off of them. He will also, most likely, be in a group of kids who are slightly older that he is. This is good for two main reasons. First, Thomas is huge! He is 4 feet tall and weighs 67 pounds. He is as big as most 8 year old boys, and he plays hard. So he can be very intimidating to kids his own age. The second reason is that he is very smart, and his vocabulary use alone can separate him from his peers. He uses big words, and other kids his age just think he "talks weird." So between being intimidated, and not understanding him when he talks, Thomas often finds himself left out when he's with other 6 year-olds.
Next Monday will be Thomas' first group, and it will be an observation to see which group of kids he'll fit in best with. Which one he will both be accepted in, but also challenged by. This part of the process is also very different from our last attempt at social group. It won't be a case of, "we have enough kids of the same age," but instead, we have the right group for Thomas.
It's an amazing feeling to be moving towards finding the tools Thomas needs to succeed. I know he has a great future, and it's my job to make sure that he has all of the support he needs to make his dreams come true. He WILL be the engineer/inventor/father/man he wants to be!
This isn't Thomas' first venture into the world of social group, he did a 12 week social group program at his OT's office last fall. It ended with mixed results. He liked the kids well enough, but I don't think that he actually learned much in the group. He didn't come out of it more able to deal with his social shortcomings, or more able to use his strengths. He had fun, so it wasn't a complete waste of 3 months.
This time I hope will be different. I feel that the clinic he will be doing his group in is more equipped to help Thomas find his positives and build off of them. He will also, most likely, be in a group of kids who are slightly older that he is. This is good for two main reasons. First, Thomas is huge! He is 4 feet tall and weighs 67 pounds. He is as big as most 8 year old boys, and he plays hard. So he can be very intimidating to kids his own age. The second reason is that he is very smart, and his vocabulary use alone can separate him from his peers. He uses big words, and other kids his age just think he "talks weird." So between being intimidated, and not understanding him when he talks, Thomas often finds himself left out when he's with other 6 year-olds.
Next Monday will be Thomas' first group, and it will be an observation to see which group of kids he'll fit in best with. Which one he will both be accepted in, but also challenged by. This part of the process is also very different from our last attempt at social group. It won't be a case of, "we have enough kids of the same age," but instead, we have the right group for Thomas.
It's an amazing feeling to be moving towards finding the tools Thomas needs to succeed. I know he has a great future, and it's my job to make sure that he has all of the support he needs to make his dreams come true. He WILL be the engineer/inventor/father/man he wants to be!
Thursday, February 28, 2013
Alphabet Soup
Well today was the "review of findings" for all the testing that Thomas went through last week. (He was being tested for Autism Spectrum Disorder.) It turns out that he is a mystery wrapped in an enigma. The doctor even presented Thomas' case to the diagnostic board at the autism clinic because he falls into an unusual diagnostic category. He falls under "has ASD and doesn't have ASD" so he shows some strong characteristics, but he shows enough non-ASD characteristics that they cancel each other out. It's very confusing. Thomas will need to be reevaluated in 12 months.
All of this might have left us right where we were, but it hasn't. Thomas did indeed have his alphabet soup added to. Not only does my sweet kid have SPD, but today we added ADHD and Anxiety Disorder NOS. (not otherwise specified)
The part of this that is so reassuring is that the doctor we've been working with has been so great! He is knowledgable, helpful, fantastic with Thomas, and amazingly receptive to anything My husband or I have to say. Included in the 30 page report on all the evaluation results is a road map of where we go from here, suggestions for treatment, suggestions for Thomas' IEP and specific ideas on how to help Thomas meet his treatment goals both in school and at home. He has even offered to attend Thomas' IEP meeting if needed.
The first step will be enrolling Thomas in a social skills class at the ASD clinic since besides attention span, social skills is where he struggles the most. Because his vocabulary skills are so advanced, he will be put into a social skills class with slightly older kids. I think this will be great.
We will also be discussing therapy for Thomas to help him deal with his anxiety problems, and possible medications if needed for the ADHD (though we plan on trying behavior modification first.)
Also, there is another possible round of testing to go through, but we are waiting to hear about that.
All in all, I think Josh and I are comfortable with the information that we have, and the help that Thomas will receive because of it. We find ourselves back at the beginning in terms of new diagnoses, but one look at my kiddo reminded me that he is the same boy, no matter what his alphabet soup says.
Thursday, February 21, 2013
Evals are done, now we wait
Like the title says, the evaluations are done and now we wait. There were two appointments, one for cognitive testing and one for diagnostic testing. There was a ton of paperwork: forms, questionnaires, and observations. And now we wait. The doctor still has a few phone calls to make (to Thomas' school, and to his OT) and has to tally scores, and write the report, but we should have some answer next Thursday.
Here's where I admit that I have no idea which way I want this to go. On one hand, and ASD diagnosis would open a ton of doors for help at school, and therapies that we hadn't thought of. On the other, it would mean that our son has Autism.
Now, don't get me wrong. An ASD diagnosis isn't the end of the world. If Thomas qualifies for diagnosis, he is very high functioning, and a diagnosis doesn't change who our son is. But it's still scary.
I'm equally scared that he doesn't qualify for a diagnosis, and we will be back where we were last month, with our son struggling more than ever and we still have no answers. No additional help.
At the diagnosis evaluation today the doctor tried to explain a few of his preliminary findings, and I literally only heard about every third word. Well, that's how many I understood anyway. It's not that he was using a lot of big words that I don't know or anything like that, it was that my brain had shut down because of panic. Will he, won't he? Does he, doesn't he? I heard "Thomas is extremely bright, no Thomas is exceptionally bright." When I was asked if I though that Thomas had trouble making friends because he didn't understand the social cues of the other kids, or was it more that he didn't have the attention span to wait around to get answers to questions, etc, my answer was "yes." Both are accurate. But every question I answered, I had the thought in the back of my mind "don't screw this up...you want/don't want this diagnosis." it's no wonder that the past two days Thomas and I are both mentally exhausted!
The next week is going to be very, very long as we wait for our review of findings appointment. In the meantime, I am trying to think of questions, or additional observations to share with the doctor. I love that he encouraged me and Josh to email him over the next few days with additional comments and/or questions. It will give me a chance to calm my brain, and think clearly about any important information I left out.
Here's where I admit that I have no idea which way I want this to go. On one hand, and ASD diagnosis would open a ton of doors for help at school, and therapies that we hadn't thought of. On the other, it would mean that our son has Autism.
Now, don't get me wrong. An ASD diagnosis isn't the end of the world. If Thomas qualifies for diagnosis, he is very high functioning, and a diagnosis doesn't change who our son is. But it's still scary.
I'm equally scared that he doesn't qualify for a diagnosis, and we will be back where we were last month, with our son struggling more than ever and we still have no answers. No additional help.
At the diagnosis evaluation today the doctor tried to explain a few of his preliminary findings, and I literally only heard about every third word. Well, that's how many I understood anyway. It's not that he was using a lot of big words that I don't know or anything like that, it was that my brain had shut down because of panic. Will he, won't he? Does he, doesn't he? I heard "Thomas is extremely bright, no Thomas is exceptionally bright." When I was asked if I though that Thomas had trouble making friends because he didn't understand the social cues of the other kids, or was it more that he didn't have the attention span to wait around to get answers to questions, etc, my answer was "yes." Both are accurate. But every question I answered, I had the thought in the back of my mind "don't screw this up...you want/don't want this diagnosis." it's no wonder that the past two days Thomas and I are both mentally exhausted!
The next week is going to be very, very long as we wait for our review of findings appointment. In the meantime, I am trying to think of questions, or additional observations to share with the doctor. I love that he encouraged me and Josh to email him over the next few days with additional comments and/or questions. It will give me a chance to calm my brain, and think clearly about any important information I left out.
Tuesday, February 19, 2013
home again, jiggity jig.
Thomas and I just returned from a weekend getaway, just the two of us. We went to visit both sets of grandparents, and it was wonderful... Mostly.
I am 9.5 weeks post op from a major surgery, so I am not back to my full energy level, and still feel some pain if I overdo it. The pain wasn't a problem, but holy cow, I forget just how much energy it takes to solo parent Thomas. I must remember to bring scotch and flowers to my husband after my next momcation!
Thomas did pretty well actually. His stimming behaviors picked up a lot during our visit, and by this morning his impulse control was pretty shot. His verbal stimming (a quiet click at the back of his throat) returned the moment we walked into his grandparents house, and I think it was mostly a self soothing technique. He was pretty unsure of the dogs when he walked in and they were barking, but he quickly warmed up to them. The clicking continued all through the visit, and when I asked him about it he just told me that it felt nice.
He did fairly well with looking at people, momentarily, when talking to them, but he did avoid eye contact. He is becoming really good at faking it. I'm not sure if that's a good thing or a bad thing.
Thomas blew his grandpa away while they were playing a puzzle game together. Thomas is an excellent problem solver, and so does really well at those types of games. He reached Master level before he really needed much help at all.
We then spent 1/2 a day at OMSI with my parents. It was wonderful to watch Thomas experiment with things there, though he was very impulsive, and didn't spend more than 20-30 seconds per exhibit, save for a select few. The Mythbusters exhibit was his favorite, and it's where he spent most of his time.
All in all, I think it was a great trip. I'm so glad that he and I got to spend some one on one time together. I look forward to our next adventure over Spring Break... Maybe we'll try hiking again.
I am 9.5 weeks post op from a major surgery, so I am not back to my full energy level, and still feel some pain if I overdo it. The pain wasn't a problem, but holy cow, I forget just how much energy it takes to solo parent Thomas. I must remember to bring scotch and flowers to my husband after my next momcation!
Thomas did pretty well actually. His stimming behaviors picked up a lot during our visit, and by this morning his impulse control was pretty shot. His verbal stimming (a quiet click at the back of his throat) returned the moment we walked into his grandparents house, and I think it was mostly a self soothing technique. He was pretty unsure of the dogs when he walked in and they were barking, but he quickly warmed up to them. The clicking continued all through the visit, and when I asked him about it he just told me that it felt nice.
He did fairly well with looking at people, momentarily, when talking to them, but he did avoid eye contact. He is becoming really good at faking it. I'm not sure if that's a good thing or a bad thing.
Thomas blew his grandpa away while they were playing a puzzle game together. Thomas is an excellent problem solver, and so does really well at those types of games. He reached Master level before he really needed much help at all.
We then spent 1/2 a day at OMSI with my parents. It was wonderful to watch Thomas experiment with things there, though he was very impulsive, and didn't spend more than 20-30 seconds per exhibit, save for a select few. The Mythbusters exhibit was his favorite, and it's where he spent most of his time.
All in all, I think it was a great trip. I'm so glad that he and I got to spend some one on one time together. I look forward to our next adventure over Spring Break... Maybe we'll try hiking again.
Monday, February 11, 2013
First Meeting with the Autism Center
Today was our first meeting with the Autism Center that will be doing Thomas' ASD evaluation. The meeting was for Josh and myself to meet the doctor, go over our questionnaires, and discuss out main concerns. The doctor was so warm and receptive, and we felt really comfortable with him, and with our decision to go with that center.
The next part of the evaluation starts next Wednesday. Thomas will have two 1-hour appointments over two days, one for cognitive evaluation, and the second for diagnostic evaluation. After those are done, Josh and I will meet with the doctor again to go over the results. A diagnosis for Thomas will be contingent on at least one other set of testing that we will have done elsewhere, but we will be heading in some direction within the next couple of weeks.
It is both an exciting and scary time in our home right now. Adding to Thomas' alphabet soup wasn't something I wanted to do, but in order to get the help he needs we have to have the correct diagnosis. I hate the idea that he will be labelled for the rest of his childhood, at least, but it is necessary.
The next part of the evaluation starts next Wednesday. Thomas will have two 1-hour appointments over two days, one for cognitive evaluation, and the second for diagnostic evaluation. After those are done, Josh and I will meet with the doctor again to go over the results. A diagnosis for Thomas will be contingent on at least one other set of testing that we will have done elsewhere, but we will be heading in some direction within the next couple of weeks.
It is both an exciting and scary time in our home right now. Adding to Thomas' alphabet soup wasn't something I wanted to do, but in order to get the help he needs we have to have the correct diagnosis. I hate the idea that he will be labelled for the rest of his childhood, at least, but it is necessary.
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