I can't believe I forgot to blog about Riley's birthday!
It was so wonderful. As I mentioned in my previous post, we are broke. That combined with school starting made me avoid planning a party until the last minute.
Riley's brother Jack had his birthday party in June. We reserved a park shelter, got favors and decorations, the whole nine. It wasn't over-the-top, but it was more than I've ever done for a birthday. Since Jack's birthday falls during the start of warm weather, weddings, graduations, picnics, etc... not many people came. So when I put out a Facebook invitation less than a week before Riley's party, I wasn't expecting much.
To my surprise, it was HUGE. I want to say there were 13 kids? Plus parents and members of extended family.
But it was simple and wonderful!
The kids played, we had brownie "cake," and it was overall laid back. I told everyone gifts were optional, but Riley ended up with a huddle of kids around him, steadily opening gifts for at least 20 minutes. It was awesome.
Riley had his day, and we had another "typical" experience that we could not have had with the child we had three years ago.
It made my heart happy.
A young mother of three sons (including one on the autism spectrum) journaling experiences with biomedical treatment, gut healing, and diet restrictions. Therapies, family stress and joyful accomplishments. This blog is meant to educate and inspire, as well as connect with other families seeking recovery.
Friday, October 14, 2011
Tuesday, October 11, 2011
Kindergarten!
Riley started school on September 1.
The very first day, I had him line up with the other kids without me. I have two younger children, and with Riley when you give him the independence he will take off and run with it. Within a few seconds he had turned around and started talking with another child in line behind him.
By the fourth day of school, he was dropping his backpack off on his line, going to play, and coming in with the bell independently. We are about 6 weeks in and though I still stay to make sure he's okay, he does fine with it. We had a few mornings where he was upset by another child (a neighbor girl who pushes his buttons) but other than that it's been seamless. This morning he said "When the bell rings, I will say goodbye, and you will go home." So I did. :)
He is doing remarkably well with the new environment. The noises, the kids, everything. I don't think his adjustment has been any different than the average kindergartener. In fact I think in some ways he's doing better. (I'm far more nervous about our typical four year old going next year!) He loves school and is doing fine with the mainstream classroom. He talks about the kids and his day.
Speech services have started. I don't know much about what she's doing so far with him. I know he likes going. I have seen his social speech change so rapidly lately, just from being around other kids. Just simple things like using people's names when he's talking to them "Do you like that, Mom?" and asking for things politely "Can I have some water?" It has been very cool. He's been picking up on a lot of five year old language, which is the most fun for me to hear.
Socially he's doing okay. We had a playdate a few weeks ago with a child he played soccer with. I've been trying to set up other playdates and have found it difficult. I guess part of me wants so badly for him to make friends. I have to remember that even though it doesn't come naturally to him, he still will. There is a little girl who just loves him at school. She hugs him everytime she sees him in the morning. Riley talks about her and that he likes those hugs.
The grant we received for respite is gone, so we are not having our sitter come anymore. Obviously the money was for Riley so it was starting to wind down anyway with him being in school all day. It is bittersweet to realize that she started with us when Riley was 2 1/2, before diagnosis, and his brother was just 8 months old. They are now 6 and 4, and have an almost two year old brother. She's been with us through all of it!
Also winding down is the money we had for free therapy hours at our old provider's clinic. I believe we have enough for three more Saturdays. It's really just fun for Riley at this point. It's hard to believe that's all over. He's just going to school. Which is strange, because I didn't expect our lives to look like this at this point. We had committed ourselves to three years of intensive therapy. We had no idea he'd get less than a year. There's a part of it that feels very good, very typical. We are not a typical family by any means, but we have more and more moments of typical.
One such moment was the night before school started, we all had dinner at Red Robin. They have gluten free options now, and we gave it a go. It was such fun taking our kids out to dinner for the first time. Although Riley wasn't over the moon, his four year old brother was. And it was pretty cool.
But as I said, we are not typical. Lest I forget it.
I have had a hard time figuring out my own place in the parenting world. I decided before school started that I was going to take a "don't tell them unless asked" approach to the autism subject with other parents at Riley's school. Really just other people in general. There is a family in particular that I have spent a lot of time talking with that have slowly figured out Riley has some special needs, but still does not know he has autism. This in contrast to people we've known via the neighborhood for a while, that already knew and treat us somewhat differently because of it. When a playdate got cancelled with the family that doesn't know recently paranoia set in. Did they know? Who told them? What had they heard? It just screwed with my emotions so much.
My middle son also started 4K this year, and I basically had to spill my guts to his teacher to get her to understand what our family, and Jack, have been through. After that conversation, I felt so much better. I honestly don't know how to handle a typical child sometimes, and because I have an older son people think I know the ropes. I don't. Help me.
~
Money has been a very bad subject. We are hurting. We spent much of our tax return on therapy for Riley over the summer and we have no savings.
We did the cerebral folate autoantibody testing, and Riley tested low positive for the blocking antibodies. I believe we sent the testing in July, and we still haven't seen our DAN! Dr for the prescription for Leucovorin. We cannot afford the visit, we cannot afford the medication. I am thinking about just sticking it on a credit card.. screw it, right? But at the same time, I just can't do it. There is something telling me to wait, and I'm not sure what. Riley is doing so well right now, but he is still very behind with social language. I do want to help him. But I also have to think about the rest of the family, and our ability to keep our home and our health.
I recently found out I need to be gluten free for life, which hasn't been hard at all so far. But the odds of our grocery bill going down just totally tanked. It is what it is.
One of the best things that's been happening lately is that I've been seeing my kids interact so much. Even our youngest, Oliver, who turns two next month, has been joining in. I can see the potential for such beautiful things as they get older.
The very first day, I had him line up with the other kids without me. I have two younger children, and with Riley when you give him the independence he will take off and run with it. Within a few seconds he had turned around and started talking with another child in line behind him.
By the fourth day of school, he was dropping his backpack off on his line, going to play, and coming in with the bell independently. We are about 6 weeks in and though I still stay to make sure he's okay, he does fine with it. We had a few mornings where he was upset by another child (a neighbor girl who pushes his buttons) but other than that it's been seamless. This morning he said "When the bell rings, I will say goodbye, and you will go home." So I did. :)
He is doing remarkably well with the new environment. The noises, the kids, everything. I don't think his adjustment has been any different than the average kindergartener. In fact I think in some ways he's doing better. (I'm far more nervous about our typical four year old going next year!) He loves school and is doing fine with the mainstream classroom. He talks about the kids and his day.
Speech services have started. I don't know much about what she's doing so far with him. I know he likes going. I have seen his social speech change so rapidly lately, just from being around other kids. Just simple things like using people's names when he's talking to them "Do you like that, Mom?" and asking for things politely "Can I have some water?" It has been very cool. He's been picking up on a lot of five year old language, which is the most fun for me to hear.
Socially he's doing okay. We had a playdate a few weeks ago with a child he played soccer with. I've been trying to set up other playdates and have found it difficult. I guess part of me wants so badly for him to make friends. I have to remember that even though it doesn't come naturally to him, he still will. There is a little girl who just loves him at school. She hugs him everytime she sees him in the morning. Riley talks about her and that he likes those hugs.
The grant we received for respite is gone, so we are not having our sitter come anymore. Obviously the money was for Riley so it was starting to wind down anyway with him being in school all day. It is bittersweet to realize that she started with us when Riley was 2 1/2, before diagnosis, and his brother was just 8 months old. They are now 6 and 4, and have an almost two year old brother. She's been with us through all of it!
Also winding down is the money we had for free therapy hours at our old provider's clinic. I believe we have enough for three more Saturdays. It's really just fun for Riley at this point. It's hard to believe that's all over. He's just going to school. Which is strange, because I didn't expect our lives to look like this at this point. We had committed ourselves to three years of intensive therapy. We had no idea he'd get less than a year. There's a part of it that feels very good, very typical. We are not a typical family by any means, but we have more and more moments of typical.
One such moment was the night before school started, we all had dinner at Red Robin. They have gluten free options now, and we gave it a go. It was such fun taking our kids out to dinner for the first time. Although Riley wasn't over the moon, his four year old brother was. And it was pretty cool.
But as I said, we are not typical. Lest I forget it.
I have had a hard time figuring out my own place in the parenting world. I decided before school started that I was going to take a "don't tell them unless asked" approach to the autism subject with other parents at Riley's school. Really just other people in general. There is a family in particular that I have spent a lot of time talking with that have slowly figured out Riley has some special needs, but still does not know he has autism. This in contrast to people we've known via the neighborhood for a while, that already knew and treat us somewhat differently because of it. When a playdate got cancelled with the family that doesn't know recently paranoia set in. Did they know? Who told them? What had they heard? It just screwed with my emotions so much.
My middle son also started 4K this year, and I basically had to spill my guts to his teacher to get her to understand what our family, and Jack, have been through. After that conversation, I felt so much better. I honestly don't know how to handle a typical child sometimes, and because I have an older son people think I know the ropes. I don't. Help me.
~
Money has been a very bad subject. We are hurting. We spent much of our tax return on therapy for Riley over the summer and we have no savings.
We did the cerebral folate autoantibody testing, and Riley tested low positive for the blocking antibodies. I believe we sent the testing in July, and we still haven't seen our DAN! Dr for the prescription for Leucovorin. We cannot afford the visit, we cannot afford the medication. I am thinking about just sticking it on a credit card.. screw it, right? But at the same time, I just can't do it. There is something telling me to wait, and I'm not sure what. Riley is doing so well right now, but he is still very behind with social language. I do want to help him. But I also have to think about the rest of the family, and our ability to keep our home and our health.
I recently found out I need to be gluten free for life, which hasn't been hard at all so far. But the odds of our grocery bill going down just totally tanked. It is what it is.
One of the best things that's been happening lately is that I've been seeing my kids interact so much. Even our youngest, Oliver, who turns two next month, has been joining in. I can see the potential for such beautiful things as they get older.
Thursday, July 14, 2011
It's been a few months, just thought I'd update quick.
We have recently stopped doing the social group Riley was going to weekly. It was a crap drive at rush hour, and though the hour away was nice for me (I could leave him and go to a coffee shop, no complaints) it was a lot of stress. He went for I think 6 weeks, and I didn't see a ton come out of it. I don't know that the peers in the group were a great match for him. He's often put with children that are younger and/or lower functioning and the truth is he just needs to be with typical peers. That said, we are utilizing the free hours we received due to my complaint with our former therapy provider against our last senior therapist. He's doing 3 1/2 hours a week in their clinic. We arranged it to be with one of the line therapists we used to have in home, so it was pretty seamless. He gets excited to go and I think it's a good break for him.
We are also still having the line therapist we hired out of pocket come two mornings a week, three hours a piece. That's going okay. She has been taking him out to a friend's farm to play with another child around his age. I think if anything it gives him a break, and she really helps with conversations.
Not doing anything with biomedical right now, just restricted diet. I've been thinking about trying Enhansa again, because he has some skin rashes going on as well as some stimming behaviors we hadn't seen in a while. Overall though, I don't see a lot of reason to add anything in.
The one thing that I'd like to get him tested for are the cerebral folate antibodies. I have quite a few friends (including our DAN! Dr's family) who have done the testing and treatment, with amazing results. B vitamins in general seem to be something that Riley needs, so this is a treatment I've researched a lot. We have the letter all ready from our family doc and just need to do it. It's $100 plus the blood draw and shipping, so I just haven't made it a priority. We have been struggling a lot since we're paying out of pocket for so much.
Some things that have been great lately... Riley has been very independent, wanting to do things on his own. He is now nearly independent with showering (just needs help with the knobs, but washes his own hair and everything) He is also helping out with small chores. His conversations have been very good lately, and he is using expressions (tonight said "Holy crap!" in context) Just overall doing pretty well in all areas. No major things lately, but steady improvement, and such a pleasant child. He and his now 20 month old brother are playing a lot lately, which has been fun to watch. His siblings really are a gift, and vice versa.
Speaking of, that 20 month old, very typical toddler wants to nurse.
We have recently stopped doing the social group Riley was going to weekly. It was a crap drive at rush hour, and though the hour away was nice for me (I could leave him and go to a coffee shop, no complaints) it was a lot of stress. He went for I think 6 weeks, and I didn't see a ton come out of it. I don't know that the peers in the group were a great match for him. He's often put with children that are younger and/or lower functioning and the truth is he just needs to be with typical peers. That said, we are utilizing the free hours we received due to my complaint with our former therapy provider against our last senior therapist. He's doing 3 1/2 hours a week in their clinic. We arranged it to be with one of the line therapists we used to have in home, so it was pretty seamless. He gets excited to go and I think it's a good break for him.
We are also still having the line therapist we hired out of pocket come two mornings a week, three hours a piece. That's going okay. She has been taking him out to a friend's farm to play with another child around his age. I think if anything it gives him a break, and she really helps with conversations.
Not doing anything with biomedical right now, just restricted diet. I've been thinking about trying Enhansa again, because he has some skin rashes going on as well as some stimming behaviors we hadn't seen in a while. Overall though, I don't see a lot of reason to add anything in.
The one thing that I'd like to get him tested for are the cerebral folate antibodies. I have quite a few friends (including our DAN! Dr's family) who have done the testing and treatment, with amazing results. B vitamins in general seem to be something that Riley needs, so this is a treatment I've researched a lot. We have the letter all ready from our family doc and just need to do it. It's $100 plus the blood draw and shipping, so I just haven't made it a priority. We have been struggling a lot since we're paying out of pocket for so much.
Some things that have been great lately... Riley has been very independent, wanting to do things on his own. He is now nearly independent with showering (just needs help with the knobs, but washes his own hair and everything) He is also helping out with small chores. His conversations have been very good lately, and he is using expressions (tonight said "Holy crap!" in context) Just overall doing pretty well in all areas. No major things lately, but steady improvement, and such a pleasant child. He and his now 20 month old brother are playing a lot lately, which has been fun to watch. His siblings really are a gift, and vice versa.
Speaking of, that 20 month old, very typical toddler wants to nurse.
Thursday, April 21, 2011
Neuropsych Eval: 27 months later
Sitting down to write this post, my kids are running around in the next room and I am thinking it is going to take me several shifts to get out what I want to. This post is that important.
This is the post that I wanted to write in the summer of 2008. I wrote many letters to myself back then (that I've since lost when my old laptop burned out) I don't remember what the wording was, but it was essentially that Riley had made massive improvements and that we expected him to be in a mainstream kindergarten classroom.
Guess what? It happened.
The last time Riley was "formally" evaluated was January 29, 2009. It was about nine months after the initial visit to see Dr W... 5 months in to GFCFSF diet and biomedical treatment. About a month after we'd finished a 40 dive stint of hyperbaric oxygen therapy (HBOT)
So let's just say it frankly: it was bad, but it wasn't quite as bad as it was prior. Let's just say that he was 40 months old at the time, and his socialization score on the Vineland-II was at a range between 4 months and 8 months.
To bring it up to speed, here. Riley lost intensive therapy funding as of last week. His medicaid waiver based their criteria largely on self-help skills, safety concerns, and areas of development that we've seen massive gains in. I can't say it was a surprise, but yea... it was a surprise. Thinking back to that visit in my living room with our case worker, I can't believe the tidal wave of change that can come with one single set of paperwork.
We did attempt to have my husband's union add autism coverage to their yearly insurance updating. We even attended a meeting and wrote what they called "an eloquent letter." It fell on dead ears and within just a few days we received the letter in the mail telling us it was a no-go.
With all that in mind, and the likely hood of an appeal being unsuccessful, I decided to approach this already-scheduled neuropsych visit as a chance to get honest answers. It was nice not to need a report written in a way to "get" something. It was just written as it was. A big plus to seeing this Dr is that he doesn't know we've done biomedical treatment. He really is an objective evaluator.
I was nervous as hell for this evaluation, though. They are stressful, and awful, and I probably have more trauma attached to that man's face than I'd ever want to admit publicly. He is the guy who told me something extremely devastating and life changing, after all. And I was the mother who freaked out. I was the one who was so full of snot and tears you'd think someone had died. I was the one who didn't want to hear any of it, and didn't hear any of it for weeks... maybe a month.
Riley and I made it up to the third floor. It was hotter than hell in there. The doc came to get us and Riley said "Hi Dr W___." as we walked into the doorway down toward his office. I sat down in a chair near Riley, who was seated at a small child-sized table. Yep, that was the same table, alright.
He looked at me with that same, blank look I remember too well.
"So, what are we doing today?"
"Well, I'm hoping we can do an evaluation and see where Riley is at... how he's doing."
"Well, we've got the diagnosis of autism already. So..."
(Explain Medicaid situation, et al)
Very quickly, his demeanor changed from "oh, great, this woman is coming in here with some false assumption that her kid is better." to him sitting back in his chair, with a very surprised look on his face,
"Huh. I see why we're in this pickle."
He began doing the testing pretty much right away. My heart started to pound. I felt tingly in my ears. I felt anxiety roll over me. I thought I was going to have a panic attack.
So again I became the mother who freaks out. I asked to go to the bathroom, and he walked me down. Riley became confused and started following us. They actually did some of the first few exercises in the hall way. I went into the bathroom, where I chugged a little Rescue Remedy, splashed some water on my face, took a deep breath, and within 90 seconds was able to come back out.
This is okay. It's really okay. It's okay if he says he's doing better. It's okay. It's okay.
I knew as he was moving through the testing that he saw what I saw. Riley is a different kid through and through.
The doc and I ran through lots of ways to get funding. We ended up deciding on an honest report that just told us how Riley was functioning. I filled out two of the same assessments he had the last time. So, we had three different ways of looking at his neurological functioning. This gave a really clear picture.
There was more than a few moments at the appointment that made me chuckle to myself, though.
When I took Riley in January 2009, he told me that there were "two types of autism." One type would have a low IQ, not learn much of anything. The other, would make steady progress and would "look autistic even when getting their PhD."
Well, guess what, my friends? There are now three types of autism, according to this Dr. Yes, you heard me right. Three types. The third type?
"Kids like Riley, these rapid learners. They just set their own curve."
He also mentioned in the report that rapid learners were "most likely to normalize" with intensive therapy. News to me! No one told me my kid could "normalize," and I doubt he thought that was a real possibility.
So it leaves the question-- what has changed in his practice the last two years? I would be willing to bet a lot of people are trying, and having success, with biomedical.
I was nervous to get the report. It took about a week to come. When it finally came I sat in my living room and read it.
So much has changed. I try not to get too caught up on numbers, but on the PDBBI he was in the 60-70 range the first time (I don't have the paper in front of me) and now is at 44 for the autism composite. Most everything has decreased dramatically.
On the Vineland II he is right in the age range for everything... except, surprising to me, daily living skills, which he is about a year behind. Motor skills? Right where he's supposed to be. Everything else is around 80% or above. This was not the case previously. He was behind everywhere.
The best part of the report is the language that he used. Things like "impressive progress" and "rapid progress." It was just wonderful to read.
So, what do we do with this information?
We are not continuing out of pocket with our previous ABA/intensive therapy provider. We have not been happy there. Riley had tried a few in-clinic sessions, but they are so expensive for what they are. He really is so far beyond much of what they do with the other kids. We did apply for a few grants, and now we may be getting a little bit of therapy due to my complaint against one of our therapists. We'll see. We may do some in-clinic hours there if we are able to get them and not having to pay for them. I just don't think it's worthwhile for him otherwise.
What we've done is hired one of our past therapists under the table. She'll be coming 6 hours per week until school starts. Working mainly on social, communication, regulation. We also still have our respite provider, who works for the same therapy service. She'll still be coming 4 hours a week until school starts as well.
Tonight I took him to a social group that is lead by a speech therapist. It's relatively cheap so we'll be giving that a try for the next few weeks. It's a long drive, and it falls right over our dinner time... but if it helps, it is worth it. That would be 1 hour a week. Very interesting to add to this... one of Riley's old OT's works there now. He was our itinerant OT through the school district. Riley doesn't receive OT anymore, of course, and this guy hadn't seen him in two years. It was really nice to see him, and show him how well Riley is doing.
Riley also was tested after his IEP and will indeed receive speech at school next year. This is really great news. I also am confident he'll do really well in general. His IEP is great and thanks to a visit, the IEP and just recently the Kindergarten visitation day, I am feeling like I have the respect from the principal and teacher that is needed to have a good communication. I feel like if he's not getting something next year, they will help me get it for him.
Last week was our first week without "official" therapy and I have to say, a weight was lifted in many ways. We are moving on to another phase and I cannot be mad about that. It is what it is.
It has made me think a lot about his healing, though. A lot of people have asked me, as I've shared the news of his great progress, what we've done. It's a long list of course, and I never know what to say "did it."
The truth is no one thing did it. His body healed. Healing is not something that happens quickly. We are so used to an immediate fix with medication, etc. True healing is not like that. True healing takes time. There is no pill you can take to make a cut heal, a bruise heal. There is no pill that makes autism heal.
What I can tell you, though, is that gut healing was first and foremost the biggest thing for Riley. Staying the course with the diet helped tremendously. Second to that, treating dysbiosis (Enhansa was the best thing we did, by far, for this) I believe what happened is that the gut healing lead to reduced inflammation and better nutrient absorption, which lead to his cells working well. I believe it was a cumulative effect. Many many things peeled back the layers upon layers of inflammation until suddenly, what seemed like overnight, he was a different kid.
It absolutely wasn't overnight, though. It has been a long 35 months since the initial neuropsych visit, and 33 months on the diet, 32 months on biomedical. We have lived a lot of life in that time. It became part of our life, really.
Part of healing is also who you choose to have in your life to help you. Very early on I was careful about who I kept around, weeding out non-supporters. In doing that, we truly had a huge support network of family and friends. I am at the point now where I don't even associate with people who don't believe in what we are doing for him.
That, I think, has been important. My parents. My friends. Respite. Autism friends. Non-autism friends. Extended family who couldn't do much more than send a check, but had NO IDEA how badly we needed those checks! It was just so important and amazing. We are truly blessed. As much as I can complain about how people don't give a shit about autism, people gave a shit! And continue to.
I know my time is waning down and I should figure out how to end this post. It has been such a rollercoaster the last 6 weeks but a lot has come out of it. For anyone who is just starting this journey, or is in a place of frustration, sadness, anger... keep the faith. I've been there. I have all of those feelings, too, and will probably continue to. As parents we have our own healing to do. The trauma is like combat (really, there was a UW study that proved this) and we have to be gentle with ourselves.
Also, last but not least, we have to be gentle with our partners. Chad has been an amazing supporter in all of this. He may not be up at nearly 10 pm writing a blog post, or carting to and from appointments, or going to school stuff. But he's here, he is present. He's working hard for his family. He understands that I won't ever be satisfied... I want the very best for all three of our sons.
Ah. So, I can finally say I typed "the" post. Here it is. It's beautiful, ain't it?
This is the post that I wanted to write in the summer of 2008. I wrote many letters to myself back then (that I've since lost when my old laptop burned out) I don't remember what the wording was, but it was essentially that Riley had made massive improvements and that we expected him to be in a mainstream kindergarten classroom.
Guess what? It happened.
The last time Riley was "formally" evaluated was January 29, 2009. It was about nine months after the initial visit to see Dr W... 5 months in to GFCFSF diet and biomedical treatment. About a month after we'd finished a 40 dive stint of hyperbaric oxygen therapy (HBOT)
So let's just say it frankly: it was bad, but it wasn't quite as bad as it was prior. Let's just say that he was 40 months old at the time, and his socialization score on the Vineland-II was at a range between 4 months and 8 months.
To bring it up to speed, here. Riley lost intensive therapy funding as of last week. His medicaid waiver based their criteria largely on self-help skills, safety concerns, and areas of development that we've seen massive gains in. I can't say it was a surprise, but yea... it was a surprise. Thinking back to that visit in my living room with our case worker, I can't believe the tidal wave of change that can come with one single set of paperwork.
We did attempt to have my husband's union add autism coverage to their yearly insurance updating. We even attended a meeting and wrote what they called "an eloquent letter." It fell on dead ears and within just a few days we received the letter in the mail telling us it was a no-go.
With all that in mind, and the likely hood of an appeal being unsuccessful, I decided to approach this already-scheduled neuropsych visit as a chance to get honest answers. It was nice not to need a report written in a way to "get" something. It was just written as it was. A big plus to seeing this Dr is that he doesn't know we've done biomedical treatment. He really is an objective evaluator.
I was nervous as hell for this evaluation, though. They are stressful, and awful, and I probably have more trauma attached to that man's face than I'd ever want to admit publicly. He is the guy who told me something extremely devastating and life changing, after all. And I was the mother who freaked out. I was the one who was so full of snot and tears you'd think someone had died. I was the one who didn't want to hear any of it, and didn't hear any of it for weeks... maybe a month.
Riley and I made it up to the third floor. It was hotter than hell in there. The doc came to get us and Riley said "Hi Dr W___." as we walked into the doorway down toward his office. I sat down in a chair near Riley, who was seated at a small child-sized table. Yep, that was the same table, alright.
He looked at me with that same, blank look I remember too well.
"So, what are we doing today?"
"Well, I'm hoping we can do an evaluation and see where Riley is at... how he's doing."
"Well, we've got the diagnosis of autism already. So..."
(Explain Medicaid situation, et al)
Very quickly, his demeanor changed from "oh, great, this woman is coming in here with some false assumption that her kid is better." to him sitting back in his chair, with a very surprised look on his face,
"Huh. I see why we're in this pickle."
He began doing the testing pretty much right away. My heart started to pound. I felt tingly in my ears. I felt anxiety roll over me. I thought I was going to have a panic attack.
So again I became the mother who freaks out. I asked to go to the bathroom, and he walked me down. Riley became confused and started following us. They actually did some of the first few exercises in the hall way. I went into the bathroom, where I chugged a little Rescue Remedy, splashed some water on my face, took a deep breath, and within 90 seconds was able to come back out.
This is okay. It's really okay. It's okay if he says he's doing better. It's okay. It's okay.
I knew as he was moving through the testing that he saw what I saw. Riley is a different kid through and through.
The doc and I ran through lots of ways to get funding. We ended up deciding on an honest report that just told us how Riley was functioning. I filled out two of the same assessments he had the last time. So, we had three different ways of looking at his neurological functioning. This gave a really clear picture.
There was more than a few moments at the appointment that made me chuckle to myself, though.
When I took Riley in January 2009, he told me that there were "two types of autism." One type would have a low IQ, not learn much of anything. The other, would make steady progress and would "look autistic even when getting their PhD."
Well, guess what, my friends? There are now three types of autism, according to this Dr. Yes, you heard me right. Three types. The third type?
"Kids like Riley, these rapid learners. They just set their own curve."
He also mentioned in the report that rapid learners were "most likely to normalize" with intensive therapy. News to me! No one told me my kid could "normalize," and I doubt he thought that was a real possibility.
So it leaves the question-- what has changed in his practice the last two years? I would be willing to bet a lot of people are trying, and having success, with biomedical.
I was nervous to get the report. It took about a week to come. When it finally came I sat in my living room and read it.
So much has changed. I try not to get too caught up on numbers, but on the PDBBI he was in the 60-70 range the first time (I don't have the paper in front of me) and now is at 44 for the autism composite. Most everything has decreased dramatically.
On the Vineland II he is right in the age range for everything... except, surprising to me, daily living skills, which he is about a year behind. Motor skills? Right where he's supposed to be. Everything else is around 80% or above. This was not the case previously. He was behind everywhere.
The best part of the report is the language that he used. Things like "impressive progress" and "rapid progress." It was just wonderful to read.
So, what do we do with this information?
We are not continuing out of pocket with our previous ABA/intensive therapy provider. We have not been happy there. Riley had tried a few in-clinic sessions, but they are so expensive for what they are. He really is so far beyond much of what they do with the other kids. We did apply for a few grants, and now we may be getting a little bit of therapy due to my complaint against one of our therapists. We'll see. We may do some in-clinic hours there if we are able to get them and not having to pay for them. I just don't think it's worthwhile for him otherwise.
What we've done is hired one of our past therapists under the table. She'll be coming 6 hours per week until school starts. Working mainly on social, communication, regulation. We also still have our respite provider, who works for the same therapy service. She'll still be coming 4 hours a week until school starts as well.
Tonight I took him to a social group that is lead by a speech therapist. It's relatively cheap so we'll be giving that a try for the next few weeks. It's a long drive, and it falls right over our dinner time... but if it helps, it is worth it. That would be 1 hour a week. Very interesting to add to this... one of Riley's old OT's works there now. He was our itinerant OT through the school district. Riley doesn't receive OT anymore, of course, and this guy hadn't seen him in two years. It was really nice to see him, and show him how well Riley is doing.
Riley also was tested after his IEP and will indeed receive speech at school next year. This is really great news. I also am confident he'll do really well in general. His IEP is great and thanks to a visit, the IEP and just recently the Kindergarten visitation day, I am feeling like I have the respect from the principal and teacher that is needed to have a good communication. I feel like if he's not getting something next year, they will help me get it for him.
Last week was our first week without "official" therapy and I have to say, a weight was lifted in many ways. We are moving on to another phase and I cannot be mad about that. It is what it is.
It has made me think a lot about his healing, though. A lot of people have asked me, as I've shared the news of his great progress, what we've done. It's a long list of course, and I never know what to say "did it."
The truth is no one thing did it. His body healed. Healing is not something that happens quickly. We are so used to an immediate fix with medication, etc. True healing is not like that. True healing takes time. There is no pill you can take to make a cut heal, a bruise heal. There is no pill that makes autism heal.
What I can tell you, though, is that gut healing was first and foremost the biggest thing for Riley. Staying the course with the diet helped tremendously. Second to that, treating dysbiosis (Enhansa was the best thing we did, by far, for this) I believe what happened is that the gut healing lead to reduced inflammation and better nutrient absorption, which lead to his cells working well. I believe it was a cumulative effect. Many many things peeled back the layers upon layers of inflammation until suddenly, what seemed like overnight, he was a different kid.
It absolutely wasn't overnight, though. It has been a long 35 months since the initial neuropsych visit, and 33 months on the diet, 32 months on biomedical. We have lived a lot of life in that time. It became part of our life, really.
Part of healing is also who you choose to have in your life to help you. Very early on I was careful about who I kept around, weeding out non-supporters. In doing that, we truly had a huge support network of family and friends. I am at the point now where I don't even associate with people who don't believe in what we are doing for him.
That, I think, has been important. My parents. My friends. Respite. Autism friends. Non-autism friends. Extended family who couldn't do much more than send a check, but had NO IDEA how badly we needed those checks! It was just so important and amazing. We are truly blessed. As much as I can complain about how people don't give a shit about autism, people gave a shit! And continue to.
I know my time is waning down and I should figure out how to end this post. It has been such a rollercoaster the last 6 weeks but a lot has come out of it. For anyone who is just starting this journey, or is in a place of frustration, sadness, anger... keep the faith. I've been there. I have all of those feelings, too, and will probably continue to. As parents we have our own healing to do. The trauma is like combat (really, there was a UW study that proved this) and we have to be gentle with ourselves.
Also, last but not least, we have to be gentle with our partners. Chad has been an amazing supporter in all of this. He may not be up at nearly 10 pm writing a blog post, or carting to and from appointments, or going to school stuff. But he's here, he is present. He's working hard for his family. He understands that I won't ever be satisfied... I want the very best for all three of our sons.
Ah. So, I can finally say I typed "the" post. Here it is. It's beautiful, ain't it?
Friday, April 1, 2011
Sometimes I have to read back on this blog (or elsewhere) to help jog my memory of the last three years. It's all such a blur.
What do I remember about three years ago that isn't yet on this blog?
I was riding in the car with a friend of mine, on the way home from a small get together at a friend's house. I remember vaguely her talking about taking Riley to the neuropsych we saw for the initial diagnosis (May 2008) I don't remember if the word autism was used at that point. I remember this was also the friend who had told me to watch the videos made by “Silent Mia” http://www.youtube.com/watch?v=JnylM1hI2jc and realizing that my son did those same hand motions. At the time I didn't know what hand flapping was.
I'm fairly certain this friend knew something more was up with Riley and was gently trying to tell me. I'm so grateful she was gentle, and even more grateful she told me.
I can honestly say that after working in special ed for 2 years, after being a nanny for a boy with autism, having a mother who has worked in special ed for 18 years... I don't think I had a clue what autism was then.
I knew my child was different, that's for sure. Almost four years ago, my mom was the first person to bring up the sensory issue as being a, well... issue. After asking some friends online what I should do, I made the appointment with Birth to Three in August of 2007. The first visit was in October. I remember thinking I must be looking for a label, fishing for a diagnosis. There's no way anything was “wrong” with my kid. In fact I remember a response on the messageboard I posted on left me feeling that way. But when I went online and did the sensory inventories, he definitely had differences. Still, when they did the evaluation and said there would be no question he'd qualify, my heart sank a bit. This was a system I didn't want to go into.
Looking back, autism hit full on right around that time. That's when I remember playdates being hell. Chasing him around. He was fixated on ceiling fans and light switches. He didn't know how to play with toys. He was exhausting. I was exhausted, too, because I had a very young baby (my middle son, Jack, who is now turning 4 in June)
I think that's when flapping started, too. He used to do this dance that was very similar to “FlashDance.”
That is the time that makes me saddest. The time from when that started until we started treating his autism. It was a very hard time for me as a mom. Stressful, but also full of self blame. I was certain that I was doing something wrong to make him act this way.
I had no idea that he was behind with social communication. It was also a few months into OT with Birth to Three before I noticed that he wasn't really playing with his toys, and they started some suggestions with play. It wasn't too long before we had an early childhood teacher added to the team. I think this was prior to diagnosis.
Once Jack hit the age that Riley was around diagnosis, it became very clear what we'd missed out on with Riley. Now we have a third son, who is neurotypical thus far at nearly 17 months. We are definitely already seeing him do things Riley never did. (Example, he “feeds” a baby, he likes to play with Little People, he sings songs, etc)
Where am I going with this?
My beautiful baby boy was lost in there for a while. Now that we are getting further away from it, I see how bad it really was. I am glad we intervened when we did. Although I am upset at the latest things that have gone on with therapy funding, etc I am reminding myself that he is worlds different now from when I started this blog.
I had a conversation on the phone with Riley tonight. He's staying at grandma's for a night. We chatted about what they were doing, about what he was eating for a snack. I think back to when phones upset him, he didn't understand what they were and he hated the way they sounded. And of course a time when he would have never been able to carry on that conversation.
He's just come so far. I'm so amazed by him every single day.
What do I remember about three years ago that isn't yet on this blog?
I was riding in the car with a friend of mine, on the way home from a small get together at a friend's house. I remember vaguely her talking about taking Riley to the neuropsych we saw for the initial diagnosis (May 2008) I don't remember if the word autism was used at that point. I remember this was also the friend who had told me to watch the videos made by “Silent Mia” http://www.youtube.com/watch?v=JnylM1hI2jc and realizing that my son did those same hand motions. At the time I didn't know what hand flapping was.
I'm fairly certain this friend knew something more was up with Riley and was gently trying to tell me. I'm so grateful she was gentle, and even more grateful she told me.
I can honestly say that after working in special ed for 2 years, after being a nanny for a boy with autism, having a mother who has worked in special ed for 18 years... I don't think I had a clue what autism was then.
I knew my child was different, that's for sure. Almost four years ago, my mom was the first person to bring up the sensory issue as being a, well... issue. After asking some friends online what I should do, I made the appointment with Birth to Three in August of 2007. The first visit was in October. I remember thinking I must be looking for a label, fishing for a diagnosis. There's no way anything was “wrong” with my kid. In fact I remember a response on the messageboard I posted on left me feeling that way. But when I went online and did the sensory inventories, he definitely had differences. Still, when they did the evaluation and said there would be no question he'd qualify, my heart sank a bit. This was a system I didn't want to go into.
Looking back, autism hit full on right around that time. That's when I remember playdates being hell. Chasing him around. He was fixated on ceiling fans and light switches. He didn't know how to play with toys. He was exhausting. I was exhausted, too, because I had a very young baby (my middle son, Jack, who is now turning 4 in June)
I think that's when flapping started, too. He used to do this dance that was very similar to “FlashDance.”
That is the time that makes me saddest. The time from when that started until we started treating his autism. It was a very hard time for me as a mom. Stressful, but also full of self blame. I was certain that I was doing something wrong to make him act this way.
I had no idea that he was behind with social communication. It was also a few months into OT with Birth to Three before I noticed that he wasn't really playing with his toys, and they started some suggestions with play. It wasn't too long before we had an early childhood teacher added to the team. I think this was prior to diagnosis.
Once Jack hit the age that Riley was around diagnosis, it became very clear what we'd missed out on with Riley. Now we have a third son, who is neurotypical thus far at nearly 17 months. We are definitely already seeing him do things Riley never did. (Example, he “feeds” a baby, he likes to play with Little People, he sings songs, etc)
Where am I going with this?
My beautiful baby boy was lost in there for a while. Now that we are getting further away from it, I see how bad it really was. I am glad we intervened when we did. Although I am upset at the latest things that have gone on with therapy funding, etc I am reminding myself that he is worlds different now from when I started this blog.
I had a conversation on the phone with Riley tonight. He's staying at grandma's for a night. We chatted about what they were doing, about what he was eating for a snack. I think back to when phones upset him, he didn't understand what they were and he hated the way they sounded. And of course a time when he would have never been able to carry on that conversation.
He's just come so far. I'm so amazed by him every single day.
Thursday, March 24, 2011
Things always seem to come in clumps. So, the latest goings-on...
Yesterday afternoon we attended Riley's annual IEP. There were 9 people there. I can't get over that... 9 people talking about our kid. I have always been pleased with our school district, and last night was no exception. I am really happy with next year's principal... already. I also like the teacher he'll likely have next year. Everyone seemed to be so respectful and took the time to talk things out.
His goals focus on social stuff, as well as self regulation. We will be reevaluating speech soon (it's been three years) to see if he might qualify for services. He has never qualified for speech, so it would be great if he does now, so he can get help at school with some of the communication challenges, and pragmatic speech issues. We will have to update the IEP in May, but it's worth it. If he gets speech, I will feel so much better about the possibility of not having ABA anymore. Communication is such a big challenge for him, still.
This morning was the meeting at my husband's union. They are preparing their new insurance policy for the coming year. We were on the agenda- and I was surprised they copied our letter and put it into the binders that everyone had about the upcoming policy changes. We spoke for about 15 minutes with the trustees. There were about 10 of them. A few questions were asked, but mostly it was a silent reception. I cried a little when talking about it. Then we got a "thank you, we'll send a letter." We won't know for a few weeks.
Right now it's just wait and see.
Yesterday afternoon we attended Riley's annual IEP. There were 9 people there. I can't get over that... 9 people talking about our kid. I have always been pleased with our school district, and last night was no exception. I am really happy with next year's principal... already. I also like the teacher he'll likely have next year. Everyone seemed to be so respectful and took the time to talk things out.
His goals focus on social stuff, as well as self regulation. We will be reevaluating speech soon (it's been three years) to see if he might qualify for services. He has never qualified for speech, so it would be great if he does now, so he can get help at school with some of the communication challenges, and pragmatic speech issues. We will have to update the IEP in May, but it's worth it. If he gets speech, I will feel so much better about the possibility of not having ABA anymore. Communication is such a big challenge for him, still.
This morning was the meeting at my husband's union. They are preparing their new insurance policy for the coming year. We were on the agenda- and I was surprised they copied our letter and put it into the binders that everyone had about the upcoming policy changes. We spoke for about 15 minutes with the trustees. There were about 10 of them. A few questions were asked, but mostly it was a silent reception. I cried a little when talking about it. Then we got a "thank you, we'll send a letter." We won't know for a few weeks.
Right now it's just wait and see.
Saturday, March 19, 2011
Last week, I met with our case worker from the agency that coordinates Riley's Medicaid waiver. I didn't think anything of the visit. I didn't prepare for it, I figured it would be quick and painless and we'd get a stamp for intensive therapy funding for the next year. She came over, we sat in the living room chatting about Riley and then quickly moved through "the annoying paperwork." Even when she was asking me all of the questions on the functional screening, I made a joke about it ("Should I be fudging these? Geez!") I asked if I needed to be worried about him qualifying, and she said she didn't think so. In a later phone call with our senior therapist, I was even more at ease when she told me that "if she thought he wasn't going to qualify, she would have told you right then and there."
So imagine my surprise when I got a call on Tuesday, telling me that Riley no longer qualifies for services. The immediate shock and devastation from that phone call was unbelievable. It caught me off guard, and sent me into sobs that didn't stop for a good hour. While legally we have the right to appeal, I don't see the point. The checklist covers basic life skills (such as dressing, following directions, etc) and the truth is... I think I agree that he does not have deficits in those areas. The only reason we'd appeal would be to buy us more time to figure out what to do. I'm suddenly learning that if I would have lied ("fudged") that screen, we would have gotten another year of therapy. Since I answered those questions honestly, we don't. I am certain there are families that work this system, and I am not sure why I didn't think to be concerned about losing therapy. Sometimes it's hard for me to see just how well he's doing.
I spent most of Tuesday and Wednesday on the phone. Was this a mistake? Nope. I talked to the executive director of the agency. They went over Riley's screen multiple times. Our case worker even talked with Riley's teacher to see if they could get a few more things he was struggling with. Nope. He missed the cut off by a mile.
Our state passed a law in 2009 that insurance companies must cover therapy for children with autism ($50,000 at intensive rate, $25,000 at non intensive rate) Unfortunately we learned that since our insurance was through a self-funded plan, Chad's union health fund had the legal right to decide whether to cover it.
In a very stressful coincidence, I've been dealing with my husband's union with insurance issues. When on the phone with them, I asked about autism coverage. I ended up talking with one of the higher-ups at his union, who told me that the health fund trustees are meeting next week to discuss next year's insurance plan. He said we could write a letter and ask to appear at that meeting to discuss this.
So, that's where we are going next. The letter is sent, we're waiting to hear about the meeting.
If they decide to cover it, there are many benefits for us. First, with the Medicaid waiver, we had to maintain a minimum of 20 hours per week to keep funding. With Riley starting Kindergarten full time in the fall, that would be a challenge. We'd end up with therapists at our house all night and a lot of the weekend. Another benefit is that even if his diagnosis is down graded, he will still receive therapy. The state mandate covers kids as long as they have an ASD diagnosis.
If they don't decide to cover it, we will have to decide what to do. Many things have been going through my head...
We could pay out of pocket for minimal hours (even with the sliding scale fee, the therapy is $40/hr.)
We've talked about taking a therapist or two from our current team and paying them out of pocket to work with us. The line therapists only make something like $10-12/hr out of that $40/hr.
I could get some sort of childcare for the other kids so that I could continue doing the therapy with him myself.
Or... we could just let it be, and move on to the next phase.
I don't really want to do the latter, but it is damn tempting. Intensive therapy is extremely demanding of myself and my family, and there is some aspects of it being over that are very appealing. Riley could be a "regular" kid again. But the fact of the matter is that probably wouldnt' be good for Riley, as he needs the structure and he needs to interaction.
I have been preparing for Riley's IEP for next year. The meeting is next week. I went to visit the school this week (I had the appointment before we knew about the Medicaid situation) I met with the principal and I sat in a classroom, likely to be his classroom next year, for about 20 minutes.
I loved what I saw. I'd venture to say that this is going to be a really great model for Riley. It is a small school in our district, one that has a lot of different families, children, and cultures mixed together. The way they structure the special education is brilliant. They have one classroom where they put all of the children with IEP's together. This allows for the services these children receive to be done in a more streamlined fashion. Of about 15 kids in the class I watched, I believe 3-4 had IEP's.
The coolest thing about it? I couldn't tell which kids they were. Yes, that's definitely where I want my kid.
After the meeting, I have a feeling I'll feel much better about the possibility of not continuing with therapy. If we don't receive insurance coverage, we will probably stop in September regardless. Or, at the very least, just a few hours a week.
We will see what the next weeks bring. I also made an appointment with the neuropsych for April 6. So that is also coming up. I just think it will be helpful if we have an update ADOS and diagnosis for insurance coverage, if that all goes through.
We'll see.
And side note, I did not even go in to what the last month has been here in Madison, WI. I have been at our capitol over and over in protest of the latest budget, which in addition to eliminating collective bargaining for public employee unions, makes huge slashes to Medicaid. At one point Riley and I visited together and I took the bullhorn to rant about it. The whole rotunda chanted "For Riley." This was not even a month ago. It is a little strange that right in the midst of this fight, my kid no longer qualifies. And the next thing on tap for legislation is making the insurance mandates have even more loopholes. It seems there will continue to be things to keep fighting for.
Oh, autism. What a pain in the ass.
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