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.
Saturday, March 16, 2013
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.
Wednesday, February 6, 2013
Scouring the Interwebs
This morning has been full of me preparing to really buckle down with this whole "writing a blog" thing. I've been wanting to do it for over a year, and I have, sporadically. I think I finally have the time and ambition to realize that goal.
So, I have spent my morning looking at all the blogging conferences happening this year, reading other blogs, looking at styles and ways women have gone before me have done all this. What I'm seeing is both daunting and exciting.
Much like in my parenting, I have so many doubts about my ability to write well. Add to that my chosen subject, my special needs child, and I am very nervous. From my previous entries you know that Thomas (T) has SPD and we are now seeking an Autism diagnosis. Much like the journey to parenting him well, writing this blog well is scary, and at the same time exciting, and satisfying. It is definitely a labor of love, and one that I am so excited to embrace as I have being the best mom I can to my special needs son.
There is going to be a whole lot of stumbles, lots of trying and failing, and hopefully some successes along the way.
I suppose I am starting a new journey in more ways than one. A new journey to better help my son. A new journey to educate my friends, family and a few strangers about Thomas' life. Maybe the most exciting journey of all, the one where I do something for me. Where I write about all of these things instead of keeping them bottled up.
Wish us luck!
So, I have spent my morning looking at all the blogging conferences happening this year, reading other blogs, looking at styles and ways women have gone before me have done all this. What I'm seeing is both daunting and exciting.
Much like in my parenting, I have so many doubts about my ability to write well. Add to that my chosen subject, my special needs child, and I am very nervous. From my previous entries you know that Thomas (T) has SPD and we are now seeking an Autism diagnosis. Much like the journey to parenting him well, writing this blog well is scary, and at the same time exciting, and satisfying. It is definitely a labor of love, and one that I am so excited to embrace as I have being the best mom I can to my special needs son.
There is going to be a whole lot of stumbles, lots of trying and failing, and hopefully some successes along the way.
I suppose I am starting a new journey in more ways than one. A new journey to better help my son. A new journey to educate my friends, family and a few strangers about Thomas' life. Maybe the most exciting journey of all, the one where I do something for me. Where I write about all of these things instead of keeping them bottled up.
Wish us luck!
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