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.
Thursday, March 24, 2011
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.
Friday, January 21, 2011
Riley is doing absolutely wonderful. We had a playdate today (that I actually arranged for his 3 year old brother before I knew Riley didn't have school this afternoon) It was so awesome. He was talking with her, playing with her, interacting. He also interacted with my friend, her mom, in a very typical way. I see it all emerging. I cannot wait. I cannot WAIT to see what these next few months have in store.
And with that, I wanted to go back and see what the diagnostic criteria for autistic disorder is and see how Riley is doing.
A. A total of six (or more) items from (1), (2), and (3), with at least two from (1), and one each from (2) and (3):
(1) qualitative impairment in social interaction, as manifested by at least two of the following:
a. marked impairment in the use of multiple nonverbal behaviors such as eye-to-eye gaze, facial expression, body postures, and gestures to regulate social interaction
(I think Riley is doing well with this. His eye contact is great, he seems to respond well to my body language, and he is great at identifying emotions.)
b.failure to develop peer relationships appropriate to developmental level
(This is emerging. I'd say he's close to his 3 year old brother's level with this one.)
c. a lack of spontaneous seeking to share enjoyment, interests, or achievements with other people (e.g., by a lack of showing, bringing, or pointing out objects of interest)
(I don't think we have a problem with that at all anymore)
d. lack of social or emotional reciprocity
(Also emerging.)
(2) qualitative impairments in communication as manifested by at least one of the following:
a. delay in, or total lack of, the development of spoken language (not accompanied by an attempt to compensate through alternative modes of communication such as gesture or mime)
(Never had a speech delay.)
b. in individuals with adequate speech, marked impairment in the ability to initiate or sustain a conversation with others
(He is having conversations now, though not quite at 5 year old level)
c. stereotyped and repetitive use of language or idiosyncratic language
(This is something that's changed quite a bit, but he does still perseverate on topics)
d. lack of varied, spontaneous make-believe play or social imitative play appropriate to developmental level
(Totally emerging!! He's doing great with it, and I think it will be right at age appropriate soon.)
(3) restricted repetitive and stereotyped patterns of behavior, interests, and activities, as manifested by at least one of the following:
a. encompassing preoccupation with one or more stereotyped and restricted patterns of interest that is abnormal either in intensity or focus
(Yes. Still present.)
b. apparently inflexible adherence to specific, nonfunctional routines or rituals
(Nope, he's doing great with this.)
c. stereotyped and repetitive motor manners (e.g., hand or finger flapping or twisting, or complex whole-body movements)
(Rarely hand flaps now.)
d. persistent preoccupation with parts of objects
(Occasional.)
B. Delays or abnormal functioning in at least one of the following areas, with onset prior to age 3 years: (1) social interaction, (2) language as used in social communication, or (3) symbolic or imaginative play.
C. The disturbance is not better accounted for by Rett’s Disorder or Childhood Disintegrative Disorder.
And with that, I wanted to go back and see what the diagnostic criteria for autistic disorder is and see how Riley is doing.
A. A total of six (or more) items from (1), (2), and (3), with at least two from (1), and one each from (2) and (3):
(1) qualitative impairment in social interaction, as manifested by at least two of the following:
a. marked impairment in the use of multiple nonverbal behaviors such as eye-to-eye gaze, facial expression, body postures, and gestures to regulate social interaction
(I think Riley is doing well with this. His eye contact is great, he seems to respond well to my body language, and he is great at identifying emotions.)
b.failure to develop peer relationships appropriate to developmental level
(This is emerging. I'd say he's close to his 3 year old brother's level with this one.)
c. a lack of spontaneous seeking to share enjoyment, interests, or achievements with other people (e.g., by a lack of showing, bringing, or pointing out objects of interest)
(I don't think we have a problem with that at all anymore)
d. lack of social or emotional reciprocity
(Also emerging.)
(2) qualitative impairments in communication as manifested by at least one of the following:
a. delay in, or total lack of, the development of spoken language (not accompanied by an attempt to compensate through alternative modes of communication such as gesture or mime)
(Never had a speech delay.)
b. in individuals with adequate speech, marked impairment in the ability to initiate or sustain a conversation with others
(He is having conversations now, though not quite at 5 year old level)
c. stereotyped and repetitive use of language or idiosyncratic language
(This is something that's changed quite a bit, but he does still perseverate on topics)
d. lack of varied, spontaneous make-believe play or social imitative play appropriate to developmental level
(Totally emerging!! He's doing great with it, and I think it will be right at age appropriate soon.)
(3) restricted repetitive and stereotyped patterns of behavior, interests, and activities, as manifested by at least one of the following:
a. encompassing preoccupation with one or more stereotyped and restricted patterns of interest that is abnormal either in intensity or focus
(Yes. Still present.)
b. apparently inflexible adherence to specific, nonfunctional routines or rituals
(Nope, he's doing great with this.)
c. stereotyped and repetitive motor manners (e.g., hand or finger flapping or twisting, or complex whole-body movements)
(Rarely hand flaps now.)
d. persistent preoccupation with parts of objects
(Occasional.)
B. Delays or abnormal functioning in at least one of the following areas, with onset prior to age 3 years: (1) social interaction, (2) language as used in social communication, or (3) symbolic or imaginative play.
C. The disturbance is not better accounted for by Rett’s Disorder or Childhood Disintegrative Disorder.
Monday, December 13, 2010
Doing well.
It's been a few months since I've blogged. Mostly, I think, because I haven't had much of a need to vent things in a while. I think as time goes on, I am more and more comfortable with approaching Riley's treatment, accepting our reality, and taking things day by day.
Riley's been getting 20+ hours a week of ABA therapy since May. We have had a lot of issues with it, lots of new staff at the agencies we work with, a therapist that ended up getting fired for being consistently late and not showing up, and just the general stress of having to deal with having people coming in and out of our home every day. It is also a challenge now that my middle son is in preschool just to balance out being there for everyone's needs. I am sad to have to miss out on events at his preschool because they are during therapy time. We hired a new sitter recently but we cannot afford to have her come much at all.
I can say one thing for sure: I am really glad he is getting this therapy. It has made a huge difference. I'm not sure that if we started two and a half years ago when he was initially diagnosed that it would have had as much of an impact. I think that handling the physical issues was the right thing to do.
He is zipping through treatment plans. The last one was about two months ago, and he's met everything except a small piece of one literacy goal. Everything else he's gone above and beyond. We're moving at a fast pace, and our lead therapist tells me each time what a bright kid Riley is and that he's going to do very well in life. I'm starting to realize when people say that, they are being honest, not just blowing smoke up my butt. ;)
We have stopped doing most of the biomedical treatment. The last few things we've done have either made things worse or had no effect. We have instead focused on optimizing his nutrition and basic nutrition supplementation. Still GFCFSF. We still spend more than we can afford on groceries, and it's worth it.
Riley's social interaction and conversations have gone through the roof. He is talking in a way that sometimes makes me stop in my tracks. It's just so... normal. He even recently began talking on the phone- something he was terrified of for a long time. He has conversations with his Grandma now.
His daily routines such as getting himself dressed, brushing teeth, potty, bathing, going to sleep (he 'reads' before bed now and tells us when he's ready to turn off the light) getting on the bus, putting a coat on, etc are all great and I'd say right at age level.
The challenges of autism continue, though. He still has trouble relating to peers and doesn't play a ton with them. He misses social cues and doesn't make an effort to engage. Sleep disruption is still happening, although he's doing great with bedtime routine. He still wakes in the night and wants one of us with him. He's also still struggling with communication at times, though that's also improved by leaps and bounds. Perseveration also continues to be an issue for him. We are over appliances for the most part, but he had moved on to smoke alarms (since they had fire drills at school) and now has moved on to talking about the weather and seasons a ton. He's also been having some trouble with being able to feed himself without making a huge mess. And hands are constantly in his mouth.
My husband and I talk about how our stress is different, of course, mostly because we've had toddlers for so long. Toddlers meaning that Riley's maturity level was stuck in a rut for so long. As his brother (now 3.5) gets older, he will no doubt catch up with things just by example. It's just unusual how long we have had children who are utterly helpless. It's nice to see it start to turn around. I see things changing with him almost daily, and I'm thankful for that.
Riley's been getting 20+ hours a week of ABA therapy since May. We have had a lot of issues with it, lots of new staff at the agencies we work with, a therapist that ended up getting fired for being consistently late and not showing up, and just the general stress of having to deal with having people coming in and out of our home every day. It is also a challenge now that my middle son is in preschool just to balance out being there for everyone's needs. I am sad to have to miss out on events at his preschool because they are during therapy time. We hired a new sitter recently but we cannot afford to have her come much at all.
I can say one thing for sure: I am really glad he is getting this therapy. It has made a huge difference. I'm not sure that if we started two and a half years ago when he was initially diagnosed that it would have had as much of an impact. I think that handling the physical issues was the right thing to do.
He is zipping through treatment plans. The last one was about two months ago, and he's met everything except a small piece of one literacy goal. Everything else he's gone above and beyond. We're moving at a fast pace, and our lead therapist tells me each time what a bright kid Riley is and that he's going to do very well in life. I'm starting to realize when people say that, they are being honest, not just blowing smoke up my butt. ;)
We have stopped doing most of the biomedical treatment. The last few things we've done have either made things worse or had no effect. We have instead focused on optimizing his nutrition and basic nutrition supplementation. Still GFCFSF. We still spend more than we can afford on groceries, and it's worth it.
Riley's social interaction and conversations have gone through the roof. He is talking in a way that sometimes makes me stop in my tracks. It's just so... normal. He even recently began talking on the phone- something he was terrified of for a long time. He has conversations with his Grandma now.
His daily routines such as getting himself dressed, brushing teeth, potty, bathing, going to sleep (he 'reads' before bed now and tells us when he's ready to turn off the light) getting on the bus, putting a coat on, etc are all great and I'd say right at age level.
The challenges of autism continue, though. He still has trouble relating to peers and doesn't play a ton with them. He misses social cues and doesn't make an effort to engage. Sleep disruption is still happening, although he's doing great with bedtime routine. He still wakes in the night and wants one of us with him. He's also still struggling with communication at times, though that's also improved by leaps and bounds. Perseveration also continues to be an issue for him. We are over appliances for the most part, but he had moved on to smoke alarms (since they had fire drills at school) and now has moved on to talking about the weather and seasons a ton. He's also been having some trouble with being able to feed himself without making a huge mess. And hands are constantly in his mouth.
My husband and I talk about how our stress is different, of course, mostly because we've had toddlers for so long. Toddlers meaning that Riley's maturity level was stuck in a rut for so long. As his brother (now 3.5) gets older, he will no doubt catch up with things just by example. It's just unusual how long we have had children who are utterly helpless. It's nice to see it start to turn around. I see things changing with him almost daily, and I'm thankful for that.
Sunday, September 19, 2010
In the past few weeks, we have had a number of very positive things happen. First, Riley had his second non-event haircut. We went to Supercuts, and I stood near my two older boys as they both did completely fine having their haircuts. Riley even let the stylist use a trimmer on the back of his neck. Unheard of for him. Unheard of. Pretty awesome.
We also turned a corner with two doctor's appointments. I decided to take him for conventional allergy testing. I was so stressed out about it, I almost didn't take him. I foreshadowed a bit, and came prepared with his favorite books. To my surprise, he let us do the skin testing (on his back) and was really laid back the whole time. I talked him through a few things but for the most part, he had no issues.
I took him last week for his five year check up with our fabulous Dr (who I'm now happy to call a friend, as we've talked and spent time together outside of my kids' health care, can't beat that!) It was also uneventful. And side note- no one even mentioned immunizations. :) I asked her to order a Vitamin D level, and thought to myself "If he freaks out, we'll just forget it." Once again I was surprised... he was absolutely fine. In fact I think he did better than most typical five year old's would.
His birthday was last week. His party was fun. Small, not overwhelming. Very good for him. When the other kids got crazy with their gluten free brownie highs, Riley came inside and started coloring with his new coloring book and colored pencils. He's getting better about just giving himself a time out.
As far as school goes, his teacher gave me a wonderful report from the first few days, saying she couldn't believe how much he'd changed over the summer. She says he's just "on" with the other kids, not missing a beat. Engaged. It's so good to hear.
He's had some really hard days, though. I got a call once because they couldn't figure out what was wrong with him, he was crying and anxious. Turns out they had a fire drill the day before, and he was worried about it happening again. His teacher and I have been in close communication, and it seems to have resolved at this point. He had a few tears getting on the bus on Friday, though. Tugged at mama's heart strings. His anxiety has been so awful lately. This whole new world has opened up for him, and it's scaring him, I think.
The new schedule has been tough to get used to, too. I decided on the afternoon class because of the ages of the kids that would be in it. I didn't want him to have kids younger than him. His class is actually some pretty high functioning kids this year, which is good news. I think that was the right decision. It's hard to have therapy in the mornings, though. We've had to bump the sessions up to three hours four mornings a week, and it's just so long for him. He also has sessions three days a week after school, and it runs into our family dinner time. I am sure we'll get into a rhythm soon, but it is taking a little longer than I anticipated.
Our middle son will probably be starting preschool in a few weeks (potty training, ugh) and that will definitely change things. I feel like we have to constantly reevaluate what's working and what's not, and right now the schedule isn't working too well. So we'll see.
Biomedical... we're taking a break. The MB12 made Riley go nuts with stimming and odd behaviors. Once we removed it, he got better. So, just probiotics right now, and probably Vit D once we get those levels back. Of course the diet, too. That's a given. We're just giving his body a break right now. I think we'll probably do a neurotransmitter test soon, because sleep and anxiety is still the biggest issue.
We also turned a corner with two doctor's appointments. I decided to take him for conventional allergy testing. I was so stressed out about it, I almost didn't take him. I foreshadowed a bit, and came prepared with his favorite books. To my surprise, he let us do the skin testing (on his back) and was really laid back the whole time. I talked him through a few things but for the most part, he had no issues.
I took him last week for his five year check up with our fabulous Dr (who I'm now happy to call a friend, as we've talked and spent time together outside of my kids' health care, can't beat that!) It was also uneventful. And side note- no one even mentioned immunizations. :) I asked her to order a Vitamin D level, and thought to myself "If he freaks out, we'll just forget it." Once again I was surprised... he was absolutely fine. In fact I think he did better than most typical five year old's would.
His birthday was last week. His party was fun. Small, not overwhelming. Very good for him. When the other kids got crazy with their gluten free brownie highs, Riley came inside and started coloring with his new coloring book and colored pencils. He's getting better about just giving himself a time out.
As far as school goes, his teacher gave me a wonderful report from the first few days, saying she couldn't believe how much he'd changed over the summer. She says he's just "on" with the other kids, not missing a beat. Engaged. It's so good to hear.
He's had some really hard days, though. I got a call once because they couldn't figure out what was wrong with him, he was crying and anxious. Turns out they had a fire drill the day before, and he was worried about it happening again. His teacher and I have been in close communication, and it seems to have resolved at this point. He had a few tears getting on the bus on Friday, though. Tugged at mama's heart strings. His anxiety has been so awful lately. This whole new world has opened up for him, and it's scaring him, I think.
The new schedule has been tough to get used to, too. I decided on the afternoon class because of the ages of the kids that would be in it. I didn't want him to have kids younger than him. His class is actually some pretty high functioning kids this year, which is good news. I think that was the right decision. It's hard to have therapy in the mornings, though. We've had to bump the sessions up to three hours four mornings a week, and it's just so long for him. He also has sessions three days a week after school, and it runs into our family dinner time. I am sure we'll get into a rhythm soon, but it is taking a little longer than I anticipated.
Our middle son will probably be starting preschool in a few weeks (potty training, ugh) and that will definitely change things. I feel like we have to constantly reevaluate what's working and what's not, and right now the schedule isn't working too well. So we'll see.
Biomedical... we're taking a break. The MB12 made Riley go nuts with stimming and odd behaviors. Once we removed it, he got better. So, just probiotics right now, and probably Vit D once we get those levels back. Of course the diet, too. That's a given. We're just giving his body a break right now. I think we'll probably do a neurotransmitter test soon, because sleep and anxiety is still the biggest issue.
Monday, July 26, 2010
Cliff's notes:
- MB12 shots=sleeping through the night
- My kid is "approachable" and "not a sensory kid."
- I'm tired.
Yes, the MB12 (methylcobalamin) shots are worth it so far. He had a shot the afternoon of our appointment and took a long nap that afternoon. The second shot came last Wed, and he slept through the night for the first time in months. Thurs and Fri he was up a few times. Saturday, we gave him one and he slept through again. Last night, no shot. Up a few times. Tonight, we gave one. We'll see. Sleep can work miracles for healing and learning, so I have a lot of hope that getting him sleeping again will really do some good. The great news is he isn't bothered by them. He was a little nervous the first time, but understands now. I explained to him that it would help him sleep and to be less nervous. He actually told me tonight he wanted one. He really gets it. I'm glad we gave them a try again. He's been off of them over a year now, but we are in a position to see if they are REALLY working or not.
Two weeks ago, at Riley's team meeting, our case manager was talking about therapy supplies and getting funding. We were talking about a therapy room, etc and realizing that wasn't really a need for Riley. He said (and I quote!) "He's not a sensory kid." I jumped on that one and asked my mom (who was standing next to me) if she'd heard what he just said. My kid, who used to have major sensory issues, isn't a sensory kid anymore.
We went to a parade yesterday that was a challenge for us. Suprisingly, it wasn't Riley that was tough. It was again our 3 year old that was scared! The only moment of being overwhelmed came with a very loud steam engine tractor. Honestly the thing bothered ME! So, it wasn't exactly an out of the box reaction either. He did great once he realized he could get candy, etc. He really blended in after a while. The people around us were really kind, got him a bag and everything. I think they could tell that he was a little different, but it's gotten to the point now where I'm not sure if they are causing a fuss over him because of his autism, or because he's a cute, innocent little kid. I think it's the latter. In fact just the other day a woman came up to me at the grocery store and commented on how sweet and (again, I quote!) "approachable" Riley was. She said it was refreshing to see that in a child. This sweet woman had no idea what those words mean to me.
Therapy really is a full time job, but now that we're in the swing of things, it's really helping. We had a team meeting this morning where we decided to start integrating Jack (our three year old) into the play. It's so cool, because they are playing together so much now and Riley is learning a lot from his play. I can't wait to see how he does with school in the fall.
He's just doing so well. Our DAN Dr appointment was great, too. Seems that we just have a few things to try tweaking one at a time to get him where he needs to be.
- MB12 shots=sleeping through the night
- My kid is "approachable" and "not a sensory kid."
- I'm tired.
Yes, the MB12 (methylcobalamin) shots are worth it so far. He had a shot the afternoon of our appointment and took a long nap that afternoon. The second shot came last Wed, and he slept through the night for the first time in months. Thurs and Fri he was up a few times. Saturday, we gave him one and he slept through again. Last night, no shot. Up a few times. Tonight, we gave one. We'll see. Sleep can work miracles for healing and learning, so I have a lot of hope that getting him sleeping again will really do some good. The great news is he isn't bothered by them. He was a little nervous the first time, but understands now. I explained to him that it would help him sleep and to be less nervous. He actually told me tonight he wanted one. He really gets it. I'm glad we gave them a try again. He's been off of them over a year now, but we are in a position to see if they are REALLY working or not.
Two weeks ago, at Riley's team meeting, our case manager was talking about therapy supplies and getting funding. We were talking about a therapy room, etc and realizing that wasn't really a need for Riley. He said (and I quote!) "He's not a sensory kid." I jumped on that one and asked my mom (who was standing next to me) if she'd heard what he just said. My kid, who used to have major sensory issues, isn't a sensory kid anymore.
We went to a parade yesterday that was a challenge for us. Suprisingly, it wasn't Riley that was tough. It was again our 3 year old that was scared! The only moment of being overwhelmed came with a very loud steam engine tractor. Honestly the thing bothered ME! So, it wasn't exactly an out of the box reaction either. He did great once he realized he could get candy, etc. He really blended in after a while. The people around us were really kind, got him a bag and everything. I think they could tell that he was a little different, but it's gotten to the point now where I'm not sure if they are causing a fuss over him because of his autism, or because he's a cute, innocent little kid. I think it's the latter. In fact just the other day a woman came up to me at the grocery store and commented on how sweet and (again, I quote!) "approachable" Riley was. She said it was refreshing to see that in a child. This sweet woman had no idea what those words mean to me.
Therapy really is a full time job, but now that we're in the swing of things, it's really helping. We had a team meeting this morning where we decided to start integrating Jack (our three year old) into the play. It's so cool, because they are playing together so much now and Riley is learning a lot from his play. I can't wait to see how he does with school in the fall.
He's just doing so well. Our DAN Dr appointment was great, too. Seems that we just have a few things to try tweaking one at a time to get him where he needs to be.
Wednesday, July 14, 2010
Results are back from the metabolic testing we had done. Still fighting yeast, now fighting bacteria (really?! UGH!) and a need for B12/folic acid is still present. The good thing is that all of the nutritional co-factors are fine! So, nutritionally we've really been doing the right things.
I think this means we're going to need to start methyl B12 shots again. Sigh. I really didn't enjoy doing them. But I think this is what Riley needs now. We're seeing our DAN again-- hopefully he'll have some ideas about the bacterial stuff as well as what we can do about the yeast at this point. I'm not sure Nystatin did a whole lot- but it certainly didn't get any worse.
Sleep has been awful. So I'm hoping that maybe the B vitamins will help with that. We're all SO tired.
The good news is that my older two kids are now playing together, and coming up with play schemes together. This morning, Riley was riding on a broom and pretending to land somewhere. They are coming up with ideas together. It's really cool that my three year old is helping facilitate playing! In fact yesterday when one of Riley's therapists came, he asked if Jack could play, too.
I think this means we're going to need to start methyl B12 shots again. Sigh. I really didn't enjoy doing them. But I think this is what Riley needs now. We're seeing our DAN again-- hopefully he'll have some ideas about the bacterial stuff as well as what we can do about the yeast at this point. I'm not sure Nystatin did a whole lot- but it certainly didn't get any worse.
Sleep has been awful. So I'm hoping that maybe the B vitamins will help with that. We're all SO tired.
The good news is that my older two kids are now playing together, and coming up with play schemes together. This morning, Riley was riding on a broom and pretending to land somewhere. They are coming up with ideas together. It's really cool that my three year old is helping facilitate playing! In fact yesterday when one of Riley's therapists came, he asked if Jack could play, too.
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