Losing to Autism
Where do I start?
It's been a few weeks since I last blogged. The night I took down his McQueen images, he was up very early, asking where the mini Thomas sticker that had been next to the "T" on his wall was placed. He had searched everywhere for it and couldn't find it. Well, that's because I threw it away. I forgot about his photographic memory and couldn't bear to tell him it ripped in the process.
The next night, he slept through the night- and he hasn't woken in the middle of the night since then. However, playing the role of an ABA therapist, we have had several external variables.
1) Spring break was approaching. He had a little trip anxiety as we went away with some friends for a few days.
2) We bought him a new bed which we put him exactly a week after his first wakeless night. His bed was from when we transitioned him to a big boy bed, and it was not a high quality mattress- Peter and I have been saying for months that the poor 75 pound boy needed a new mattress, as it creaked with every movement.
3) We stopped the Melatonin. It is only helpful in getting a child to fall asleep, which wasn't his issue- it was staying asleep that was the problem.
So whatever the reason, I am happy to not be woken in the middle of the night anymore. There was one more variable that I'll write about in a minute.
The week before spring break, we were called into an IEP meeting for Hunter. I knew his annual wasn't for a couple more months, so I dreaded seeing the notice.
I knew we were regressing.
I can't say enough positive things about the team of ladies that lead him daily in this battle. But I am sure they are just as tired as we are, and confused as to how to exactly help a child that functioned in the classroom months before.
We added resource to Hunter's daily schedule, where he will be leaving the classroom for 90 minutes/ day for direct instruction.
One-on-one help.
I should be throwing my hands in the air, excited for him to have one-on-one attention (which will be incredible for him).
But instead, I find myself shaking my fists in anger. Wiping my tears in sadness.
We are losing the battle.
He is an intelligent child, but the gap has started to widen again. We saw the same type of regression when he was a younger boy, except related to socialization. In the early days after he got sick, he could pass as a typical kid with an arm flap. He played with other kids, smiled, played tag...but as he started to get a little older, and the other kids continued to develop socially, he started to shy away from others. He didn't know how to play with kids who were excited to run and jump, play hide and seek, and didn't mind losing games now and then.
The gap continued to widen, until we were left with a child who swings by himself daily.
Now that the fundamentals of first grade and kindergarten have been established (reading, decoding, basic math), the curriculum has started to change and become more difficult. He was ahead of his peers starting kinder, but now he is falling behind in the second semester of first grade.
I have called Dr. G and his nurse multiple times over the past few weeks. The week prior to spring break, Dr. G gave me a recommendation that I never would have considered in the past.
He wanted us to start an anti-psychotic with Hunter.
He wasn't as concerned with the attention difficulties as he was with the rage that followed the attention issues. When Hunter didn't understand a concept at school, he would rage until the special ed staff took him out of the room or the teacher calmed him down. Since started IVIG, these rages had dissipated...but now with the inability to maintain attention and the frustration of the coursework, they were back in full force. He thought prescribing a stimulant for attention could ramp him up even more, so he wanted to start with an anti-psychotic (typically used for bipolar disorder) off-label to assist with his sleep and take the edge off a bit.
If you think picking up a script for an anti-psychotic for your 7 year old is an easy task, it's not.
If you think administering it to him is any easier, it's not.
But we did it.
We started the week of spring break, so that we could have our eyes on him during the day, since it is given before bedtime. And honestly, I haven't seen incredible differences. He did get 4 purple days at school this week, but so did the whole class.
I had a breakdown that week similar to the week he was diagnosed for the first time. I have written about this multiple times, but grief is so incredibly cyclic. You come to the stage of acceptance, where you aren't excited about this diagnosis, but you have learned to live with it. However, when things start to go backwards, and you're crushing pills in hopes to stop your 7 year old from raging at school, you start completely over.
I am back to anger . Denial isn't even an option at this point.
We have had some great moments. We have tried to maintain our normalcy, but we all feel it. Paige's anxiety is higher than ever- I had her meet with the counselor for an extra session. Peyton has made several comments about Hunter being angry all the time. Peter and I feel it as we try to parent with a foggy head from lack of sleep, stress, and sadness.
I haven't written for awhile because I didn't know if I could tell y'all that we started the meds. It is against everything I have preached, everything I have held close to my heart in regards to natural remedies. But there comes a point when you just have to trust the advice of a physician.
I called desperate for an antibiotic a few weeks ago, because I really, truly believe we would see a change if he started a medication. Is it horrible that I hoped he would catch Peyton's cold and an ear infection would develop so that we could get a script? Dr. G won't give us one and doesn't want to go that route.
I am nervous to go into this next round of IVIG with things the way they are. We didn't see any relief from IVIG #15, and I am praying that we haven't gone too far. A year ago I was singing happy tunes and couldn't believe how "lucky" I felt with the course of action at that time.
I know I ask you all to pray for us ALL.THE.TIME but we could use a little intervention. I have been prepping all week for my first parent support group I am leading at our church this next Friday. I want to be able to speak freely, with passion, but with optimism for all of the parents who struggle daily like we do.
Here's a few pics from our recent adventures:
Peyton turns 5
Then a party with his friends...
The birthday boy got to break a board...
Hunter helping with dinner...
And then a little Easter mini-party- a few "egg-ercises" in eggs...
And then an egg/spoon race... (Hunter wouldn't take part in any games)
And baseball with confetti eggs!
It's been a few weeks since I last blogged. The night I took down his McQueen images, he was up very early, asking where the mini Thomas sticker that had been next to the "T" on his wall was placed. He had searched everywhere for it and couldn't find it. Well, that's because I threw it away. I forgot about his photographic memory and couldn't bear to tell him it ripped in the process.
The next night, he slept through the night- and he hasn't woken in the middle of the night since then. However, playing the role of an ABA therapist, we have had several external variables.
1) Spring break was approaching. He had a little trip anxiety as we went away with some friends for a few days.
2) We bought him a new bed which we put him exactly a week after his first wakeless night. His bed was from when we transitioned him to a big boy bed, and it was not a high quality mattress- Peter and I have been saying for months that the poor 75 pound boy needed a new mattress, as it creaked with every movement.
3) We stopped the Melatonin. It is only helpful in getting a child to fall asleep, which wasn't his issue- it was staying asleep that was the problem.
So whatever the reason, I am happy to not be woken in the middle of the night anymore. There was one more variable that I'll write about in a minute.
The week before spring break, we were called into an IEP meeting for Hunter. I knew his annual wasn't for a couple more months, so I dreaded seeing the notice.
I knew we were regressing.
I can't say enough positive things about the team of ladies that lead him daily in this battle. But I am sure they are just as tired as we are, and confused as to how to exactly help a child that functioned in the classroom months before.
We added resource to Hunter's daily schedule, where he will be leaving the classroom for 90 minutes/ day for direct instruction.
One-on-one help.
I should be throwing my hands in the air, excited for him to have one-on-one attention (which will be incredible for him).
But instead, I find myself shaking my fists in anger. Wiping my tears in sadness.
We are losing the battle.
He is an intelligent child, but the gap has started to widen again. We saw the same type of regression when he was a younger boy, except related to socialization. In the early days after he got sick, he could pass as a typical kid with an arm flap. He played with other kids, smiled, played tag...but as he started to get a little older, and the other kids continued to develop socially, he started to shy away from others. He didn't know how to play with kids who were excited to run and jump, play hide and seek, and didn't mind losing games now and then.
The gap continued to widen, until we were left with a child who swings by himself daily.
Now that the fundamentals of first grade and kindergarten have been established (reading, decoding, basic math), the curriculum has started to change and become more difficult. He was ahead of his peers starting kinder, but now he is falling behind in the second semester of first grade.
I have called Dr. G and his nurse multiple times over the past few weeks. The week prior to spring break, Dr. G gave me a recommendation that I never would have considered in the past.
He wanted us to start an anti-psychotic with Hunter.
He wasn't as concerned with the attention difficulties as he was with the rage that followed the attention issues. When Hunter didn't understand a concept at school, he would rage until the special ed staff took him out of the room or the teacher calmed him down. Since started IVIG, these rages had dissipated...but now with the inability to maintain attention and the frustration of the coursework, they were back in full force. He thought prescribing a stimulant for attention could ramp him up even more, so he wanted to start with an anti-psychotic (typically used for bipolar disorder) off-label to assist with his sleep and take the edge off a bit.
If you think picking up a script for an anti-psychotic for your 7 year old is an easy task, it's not.
If you think administering it to him is any easier, it's not.
But we did it.
We started the week of spring break, so that we could have our eyes on him during the day, since it is given before bedtime. And honestly, I haven't seen incredible differences. He did get 4 purple days at school this week, but so did the whole class.
I had a breakdown that week similar to the week he was diagnosed for the first time. I have written about this multiple times, but grief is so incredibly cyclic. You come to the stage of acceptance, where you aren't excited about this diagnosis, but you have learned to live with it. However, when things start to go backwards, and you're crushing pills in hopes to stop your 7 year old from raging at school, you start completely over.
I am back to anger . Denial isn't even an option at this point.
We have had some great moments. We have tried to maintain our normalcy, but we all feel it. Paige's anxiety is higher than ever- I had her meet with the counselor for an extra session. Peyton has made several comments about Hunter being angry all the time. Peter and I feel it as we try to parent with a foggy head from lack of sleep, stress, and sadness.
I haven't written for awhile because I didn't know if I could tell y'all that we started the meds. It is against everything I have preached, everything I have held close to my heart in regards to natural remedies. But there comes a point when you just have to trust the advice of a physician.
I called desperate for an antibiotic a few weeks ago, because I really, truly believe we would see a change if he started a medication. Is it horrible that I hoped he would catch Peyton's cold and an ear infection would develop so that we could get a script? Dr. G won't give us one and doesn't want to go that route.
I am nervous to go into this next round of IVIG with things the way they are. We didn't see any relief from IVIG #15, and I am praying that we haven't gone too far. A year ago I was singing happy tunes and couldn't believe how "lucky" I felt with the course of action at that time.
I know I ask you all to pray for us ALL.THE.TIME but we could use a little intervention. I have been prepping all week for my first parent support group I am leading at our church this next Friday. I want to be able to speak freely, with passion, but with optimism for all of the parents who struggle daily like we do.
Here's a few pics from our recent adventures:
Peyton turns 5
 |
| 5 FINGERS FOR 5 YEARS! |
this girl has some ups
He cut the knife with a samurai sword!
he did it!
do those burpees, girls!
Tomorrow, He is risen! Let us rejoice!
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