On this World Autism Awareness Day, here's a great post about why churches need to be prepared to welcome children with special needs and do what's within their resources to accommodate them.
http://theinclusivechurch.wordpress.com/2014/04/02/autism-and-the-church/
As Ben has gotten older, it's become increasingly difficult to be involved at church, especially when there are all-church activities without childcare. He just can't sit in a church service, so our options are to attend the activity and spend time out in the lobby or another area trying to keep him busy and entertained, to keep him with us and be disruptive and not get a chance to really participate, or to stay home.
Guess which one we choose?
Ben has also had difficulty in the past with being in the nursery for both services, so we've had to start splitting our time depending on who is doing what at church that week. I'm usually singing with the choir and/or the worship team, and on the Sundays when I'm not, James usually is running sound. So one of us goes early to volunteer and stays for both services, and the other one takes the kids to, usually, the early service because it's less crowded and the volunteers during that hour seem to have a special place in their hearts for Ben.
I'm thankful that our church is preparing a classroom for special needs children. I'm anxious for it to open because Ben really is too big for the toddler nursery these days. I appreciate that we've been able to keep him there because it's more secure than the other classrooms and there are fewer places where he can get hurt. But he's not able to transition into the Kindergarten-level class and the nursery isn't working.
I don't know when the classroom will be ready and how long it will take to get enough volunteers to staff it, but I hope that it's soon and that there are lots of people with big hearts and a desire to help. I would love to see a full special-needs ministry bloom at our church, with a monthly night out for parents, activities for siblings to help them connect with others in the same situation, and more. There are some churches out there that are doing really great things to serve families who have special needs.
It's so important for families with special needs children to know that there is a safe place for their children, where they will be cared for and loved and not just tolerated, where someone will be a godly influence on their children and where they will be exposed to the teachings of the Bible while their families are receiving the same kind of teaching. There are so many families out there - maybe they're not at your church currently. But maybe they would be if there was a place for them.
Wednesday, April 2, 2014
Thursday, March 6, 2014
It's Almost Gardening Time Again!
I started this as a Facebook status update, then realized it was getting kind of wordy. So, blog post!
I bought some seed packets yesterday and am starting to get excited about gardening this year. I am not, however, excited about clearing out the garden area. I wish I had cleared out the old stuff last year and covered over the ground. But I didn't, so now I have more work ahead of me.
Still, it should be easier than last year, when I hadn't touched the area for a few years and the weeds were 2 feet high in some spots of the planter.
This year, I'm planting in a larger area and giving more room to the squash and pumpkin plants in hopes that I will get some good results from them and will avoid the mildew that was such a problem last year. And I'm going to do more intentional planting in containers, rather than transplanting a ton of stuff because the garden gets too crowded.
AND I'm starting earlier to give things like tomatoes time to actually ripen. I had so many nice-looking tomato plants with many tomatoes growing on them, but they were all still green when the weather turned cold again, and none ripened. The first year or two that I tried gardening, I got a number of tomatoes, so I know it's possible. I just didn't plant until late June last year, which didn't give them enough time.
So far, I've gotten:
I bought some seed packets yesterday and am starting to get excited about gardening this year. I am not, however, excited about clearing out the garden area. I wish I had cleared out the old stuff last year and covered over the ground. But I didn't, so now I have more work ahead of me.
Still, it should be easier than last year, when I hadn't touched the area for a few years and the weeds were 2 feet high in some spots of the planter.
This year, I'm planting in a larger area and giving more room to the squash and pumpkin plants in hopes that I will get some good results from them and will avoid the mildew that was such a problem last year. And I'm going to do more intentional planting in containers, rather than transplanting a ton of stuff because the garden gets too crowded.
AND I'm starting earlier to give things like tomatoes time to actually ripen. I had so many nice-looking tomato plants with many tomatoes growing on them, but they were all still green when the weather turned cold again, and none ripened. The first year or two that I tried gardening, I got a number of tomatoes, so I know it's possible. I just didn't plant until late June last year, which didn't give them enough time.
So far, I've gotten:
- Herbs (sage, sweet basil and oregano)
- Multicolored mixes of carrots and sweet peppers
- Sugar snap peas (a huge favorite of Ben's last year)
- Green beans
- Cucumbers
- Orange Slice Hybrid Tomatoes (excited to try these - their color is awesome)
- Green onions
- and Spinach
I also bought a packet of Marigold seeds to sow around the edges to help cut down on garden pests.
I want to buy butternut and spaghetti squash, zucchini, pumpkins, grape tomatoes, Roma or another type of red tomato (and/or maybe purple heirloom?)...and I think that's it. Possibly asparagus, but I need to see if that will grow well here. Oh, and lettuce. And maybe another herb or two.
I have not gotten to a nursery yet to check out dwarf apple trees, but that is another thing I'd like to plant, this year if I can. I will probably get 2 trees of different varieties for cross-pollination purposes.
Really hoping that I can get a higher yield this year from the garden, and I think that by planting earlier and giving more room for things to grow, I will.
Tuesday, March 4, 2014
Iowa Stubbornness
This morning, I was able to sit in on Circle Time in Ben's classroom. I was already planning to observe while he worked with his teacher and the speech therapist on PECS (Picture Exchange Communication System) cards, but I had gone in earlier to help out Rachel's teacher, and she didn't have anything for me to do. Ben's teacher saw me in the hallway and said I was welcome to come in sooner, so I did.
Ben did awesome during Circle Time, paying attention to the activities that they were doing (days of the week, weather, letter of the day, etc.) and enjoying the songs that were playing on the iPad as the teachers and some children sang along. He sat for the entire time and didn't try getting up once. Then Circle Time was over and it was time for PECS.
And I tell you what, he would not sit for anything. He didn't want crackers, he didn't want Bugles, and he didn't want to sit. Mostly he wanted to stare at his own reflection in the microwave and tell himself how awesome he looked, but then he wanted to just move around the room and do his own thing. Finally he went into the quiet room (a small alcove-type room with a comfy chair that's often kept dark so that kids who have sensory overload can go in there for a break) and sat.
The speech therapist wondered if maybe he needed a break after sitting for so long during Circle Time. They went ahead and worked with another student, and when they were done, Ben was still in the quiet room. So the three of us moved in there with him to try again.
Cut to about a minute and a half later, and he left us in the room to go back into the classroom and again do his own thing. Two more minutes and one brief return on his part, only to be a tease and result in him leaving once more, and I said "I wonder if I'm just too much of a distraction to him?" I went out in the hallway and moved out of sight of the window, then waited for a minute.
Wouldn't you know it? I peek in the window, and he's sitting at the table with his teacher and speech therapist. They're using his fish toy as incentive, and he's picking up the card and handing it back to the speech therapist and getting back his fish. They repeated it a number of times while I watched. He ended up doing it 8 out of 10 times without any prompting, which was a 10% improvement from last week.
He just didn't want to work while Mom was in the classroom.
Stubborn little stinker.
Ben did awesome during Circle Time, paying attention to the activities that they were doing (days of the week, weather, letter of the day, etc.) and enjoying the songs that were playing on the iPad as the teachers and some children sang along. He sat for the entire time and didn't try getting up once. Then Circle Time was over and it was time for PECS.
And I tell you what, he would not sit for anything. He didn't want crackers, he didn't want Bugles, and he didn't want to sit. Mostly he wanted to stare at his own reflection in the microwave and tell himself how awesome he looked, but then he wanted to just move around the room and do his own thing. Finally he went into the quiet room (a small alcove-type room with a comfy chair that's often kept dark so that kids who have sensory overload can go in there for a break) and sat.
The speech therapist wondered if maybe he needed a break after sitting for so long during Circle Time. They went ahead and worked with another student, and when they were done, Ben was still in the quiet room. So the three of us moved in there with him to try again.
Cut to about a minute and a half later, and he left us in the room to go back into the classroom and again do his own thing. Two more minutes and one brief return on his part, only to be a tease and result in him leaving once more, and I said "I wonder if I'm just too much of a distraction to him?" I went out in the hallway and moved out of sight of the window, then waited for a minute.
Wouldn't you know it? I peek in the window, and he's sitting at the table with his teacher and speech therapist. They're using his fish toy as incentive, and he's picking up the card and handing it back to the speech therapist and getting back his fish. They repeated it a number of times while I watched. He ended up doing it 8 out of 10 times without any prompting, which was a 10% improvement from last week.
He just didn't want to work while Mom was in the classroom.
Stubborn little stinker.
Saturday, February 15, 2014
The Stupidest Thing I've Ever Done
It's awful when you have to see your child in a hospital bed. But it's worse when it was your own carelessness that put them there.
Thursday was a good day. I was working on components for cupcakes that I was going to make for a family birthday party that would take place 2 days later. I had lunch with James mid-day, then went home to get in some exercise and work on box tops for the kids' school before picking them up. I went to get the kids and got a great report from the teacher who had subbed in for Ben's teacher, who had an unexpected absence that day. We came home and were doing our normal post-school routine.
Then I got out Ben's new medication, prescribed to help treat aggression and hopefully help him attain better focus and some calmness so that he can make more progress in school and at home. He's starting with a small dosage that requires splitting the tablets into fourths, something that's hard to do with a knife and those tablets, so I had bought a pill splitter that morning and had washed it and let it dry.
I started splitting up the tablets at the counter while Rachel and Ben were having snacks at the table Then Ben asked for something and as I took it to him, I realized he had a poopy diaper.
Poopy diapers can't wait at our house. Not only do they often get removed if we don't get to them quickly, they sometimes get smeared and can even be a source for snack material. Gross, I know, but it's the reality of our lives with a child with autism. Sometimes they're looking for sensory input when they do this, and sometimes it's the strong smell and texture that appeal to his need for the input. The eating happens pretty infrequently these days but we still jump to it when we have a poopy diaper so as to keep him comfortable and keep messes from happening.
So I dropped everything and took him upstairs to change him. As I followed him up the stairs, I thought "Should I put up the baby gate to block the kitchen?" And then I thought "Nah, I'm sure it's fine," completing forgetting that there was medication out on the counter. I got him changed and wrapped up his diaper in disposal bags, and as I threw it in the Diaper Champ, I hear my daughter call out "Mom, Ben grabbed a bottle and is running with it! I don't know what he got!"
I still hadn't recalled that the medication was out on the counter (out of sight, out of mind) but went tearing down the stairs, anyway, because if Ben is running with something, it's usually something he knows he's not supposed to have, like a bottle of juice that he's about to open and dump on the floor. I reached him seconds later and saw him with the prescription bottle, then I realized that he was chewing. I tried to get my fingers into his mouth to get out any medicine that might still be in there, but he clamped down with the force of a moray eel. Let me tell, the boy has STRONG jaws.
I still hadn't recalled that the medication was out on the counter (out of sight, out of mind) but went tearing down the stairs, anyway, because if Ben is running with something, it's usually something he knows he's not supposed to have, like a bottle of juice that he's about to open and dump on the floor. I reached him seconds later and saw him with the prescription bottle, then I realized that he was chewing. I tried to get my fingers into his mouth to get out any medicine that might still be in there, but he clamped down with the force of a moray eel. Let me tell, the boy has STRONG jaws.
I knew I wouldn't be getting anything out of his mouth, so I ran to the kitchen to see how many pills were there. Thankfully he had grabbed the bottle that only had a few pills left in it and not the pills and pill portions that were out on the counter for splitting. I tallied what was remaining and what we'd given to him so far and counted 5 missing pills. Then I got on the phone with the Poison Control Center, who advised me to get him to an ER, possibly by ambulance.
I called 911 and paramedics from our local fire station arrived in about 3 minutes. One of them was a friend of ours from church, and it was immensely comforting to see a familiar face. It also worked well for him to sit with Ben and take a look at him, because Ben felt more comfortable with him than with a stranger. They were very kind and understanding and did some checking of him and of information about the medication, and didn't feel that Ben needed to be transported by ambulance. They advised that I call the doctor who had prescribed the medication to see what she thought about a hospital visit, and she concurred that he should be taken in since that amount was a lot for his size.
Long story short, we got him to the ER at our local children's hospital, and they admitted him for overnight monitoring and observation. He had a urine test (via catheter, poor guy), a blood test, regular checking of his vitals, a heart EKG and was given an anti-narcotic medication to see if that might get his other medication to "bind" to it and leave his body faster. The medication caused his heart rate and blood pressure to be lower than normal, but not in a range that caused concern for the medical staff, thankfully. It made him very sleepy, and he slept from around 5pm on Thursday until a little after 9am on Friday, with fitful wakings, then he dozed off and on until early afternoon.
We got him to rouse and go for a walk with us at about 1pm, and then he started eating and drinking and reviving some more. The doctors were pleased with his progress and decided to discharge us a few hours later. He was weepy for much of the rest of the late afternoon and went to bed early. He didn't sleep for several more hours but seemed much more content to be in his darkened room by himself. And then when he did fall asleep, he slept well until 9am this morning, Saturday.
Today he is back to his happy little self. He's had a good appetite and he enjoyed a nice long bath, and then he's been grooving to his favorite music videos and watching Jack's Big Music Show. He's been in a great mood, even doing the hand-flapping that he seems to do when he's feeling especially happy.
I've been filled with crushing guilt and self-judgment. I can't believe I could so quickly forget that I had medication sitting out. It was a stupid mistake to make, and we won't be getting out medication when Ben is home and awake anymore, except to take out a bottle to get his regular dosage, then put it away immediately.
Ben is a smart cookie, and he remembers things. He has no awareness of danger and safety, which makes it really tough to stay one step ahead of him at times. Sometimes we're racing to head him off or to get something from he that he shouldn't have, like a soda can. Yes, even soda cans are dangers, which we found out after he put his thumb into the hole of one and got a cut that I couldn't get to stop bleeding. Everything that fits into his mouth is a potential danger, because he's very oral and will put things right in there. Favorites include marker pens, erasers and small lids of bottles.
It's hard to stay vigilant all the time, and the nighttime wakings of him and his sister do not help with that because we're always tired. But having the medicine out in his presence in the first place was just plain dumb, and it's difficult to stop kicking myself over that. I am thankful that he didn't take more of it or get into something that would have had long-lasting effects, caused permanent damage or been fatal.
I don't think of myself as a stupid person or a bad parent in a general sense, but I certainly feel like one after this. It's so easy to be distracted, and it can be disastrous.
As a side note, I am so thankful for the "village" of people who have been there for us with our children. I've appreciated all of those who pray for us, either in particular circumstances or on an ongoing basis. I appreciate our friend Jen, who is a teacher at Rachel's school and has kept Rachel with her on several occasions when we've had an emergency and couldn't get back in time to pick her up from school. My mom came and stayed with Rachel while I packed up things for James and Ben's overnight stay at the hospital and took them to him, and she got Rachel put to bed so that I could just come home and decompress and get to bed. Rachel has been a champ throughout the last couple of days and we are grateful that she spotted Ben grabbing the bottle and quickly sounded the alarm. She's had to learn to be more responsible and to give in more often than kids with typical siblings do. And she's had to deal with having less of our attention, too, because Ben requires more of us.
We've been to the hospital before (onset of seizures, eating a portion of decorative glass from a friend's garden, and our daughter getting a massive cut on her forehead after running into someone at school) and I've posted about it on Facebook and asked for prayer. I didn't do that this time because I was just mortified and ashamed. But I felt like I needed to share our story so that people know that situations like this don't just happen to parents who are being neglectful. And if this helps serve as a reminder to people to be careful with medications or to make sure that other dangers are out of reach, so much the better.
Saturday, January 4, 2014
One of Those Moments That Make It All Worth It
We had a rough night last night, with Rachel and Ben both being awake in the middle of the night. James moved Ben to his crib, where he continued to whoop it up for a while. Rachel was upset because she was caught with her light on and was cranky and felt cold, so she started banging her head and other parts of her body on her bedroom wall. So we were all up for a while and felt tired today. Thankfully, everyone was able to go back to sleep at one point or another.
We had a pretty good day today, but I was really ready when the kids' bedtime rolled around. Ben was emotional but we could tell he was tired and just needed to be in bed. Rachel dawdled (as per usual), and finally we got her all tucked in and prayed with her and gave hugs and kisses just before 8.
I headed downstairs to the kitchen to chill out for a little while and read some online news. I was there for about 5 minutes where I heard "Mom? Hey, Mom?" Gritting my teeth, I said "I'll be up there in a minute." And then I shook off my irritation and went to her room, where I asked "What's up?"
"Can I have a drink of water, and can you sit with me for a while?" I didn't feel like sitting in her room because I just wanted to be by myself (I'm an introvert, so I need that alone time to recharge). But it didn't take much for me to do that, and I know she likes it, so I stayed.
She made a few quiet comments to me while I was there, and just before I left, she said "I love you, and I love spending time with you, too."
I'm so glad I said yes.
We had a pretty good day today, but I was really ready when the kids' bedtime rolled around. Ben was emotional but we could tell he was tired and just needed to be in bed. Rachel dawdled (as per usual), and finally we got her all tucked in and prayed with her and gave hugs and kisses just before 8.
I headed downstairs to the kitchen to chill out for a little while and read some online news. I was there for about 5 minutes where I heard "Mom? Hey, Mom?" Gritting my teeth, I said "I'll be up there in a minute." And then I shook off my irritation and went to her room, where I asked "What's up?"
"Can I have a drink of water, and can you sit with me for a while?" I didn't feel like sitting in her room because I just wanted to be by myself (I'm an introvert, so I need that alone time to recharge). But it didn't take much for me to do that, and I know she likes it, so I stayed.
She made a few quiet comments to me while I was there, and just before I left, she said "I love you, and I love spending time with you, too."
I'm so glad I said yes.
Wednesday, November 13, 2013
One Year Ago
One year ago today was the worst day of my life. It was the day that I walked in to Ben's bedroom to get him up for school and found him unconscious on the floor after vomiting during the seizure he was still experiencing. We didn't know at the time what was happening, but rushed him to the ER in town (he had another seizure during the drive), where they stabilized him, ran a CT scan (during which he had 2 more seizures), then made arrangements to transport him by ambulance to the Children's Hospital in nearby Tacoma.
Here he is in the ambulance:
I'm sure it was very disorienting for him. The last thing he remembered was probably being in his room that morning before the seizure started. I had heard him chattering a little shortly before I had gone in there and found him, so it hadn't been long. But then it was probably really strange to wake up in a hospital room with a tube in his arm and machines all around and people staring at him, some of whom he knew, some of whom he didn't.
He stayed awake for about half an hour before he crashed again for several more hours. We had ordered pizza from the menu for him in case he woke up hungry. He woke up again a little before 7, and we were able to get him to eat, first with some persuading, then with more enthusiasm.
Not too long after dinner, a tech came by to do an EEG on Ben's brain so that they could try to determine if Ben was still experiencing unseen seizures or if there was anything else they needed to see in his brain activity. We were skeptical that he would be able to attach roughly 2 dozen electrodes to Ben's head at all, much less in a way that they would stay adhered long enough for him to run the test. And we didn't think Ben would stay still long enough for the test, either.
Much to our surprise, the EEG tech got every single one of those electrodes on. He had such patience, and when Ben would start to move around, he'd just wait until Ben settled back down. He reapplied a few that Ben loosened, but when all was said and done, everything was on that needed to be. They were hoping to do both waking and sleeping EEGs during that time. I sang to Ben and played some videos on my phone to keep him still during the waking part, then he fell asleep partway through, so it worked out perfectly to do the sleeping EEG, too. We were thankful to God for helping Ben through that.
It was shortly after 10pm when the pediatric neurologist came to go over the results of Ben's EEG. They had had 4 other children with the onset of seizures in the hospital that day, so she was quite busy. It turns out that he was still having little seizures in his left and right frontal cortexes. That, coupled with the lack of a fever or anything else preceding his seizures, indicated that he had epilepsy.
Interestingly, this neurologist started out as an autism specialist before moving into neurology, so in addition to treating Ben's epilepsy, she also performed a more thorough evaluation on him, and his diagnosis was changed from PDD-NOS to Autism. Both are on the autism spectrum, but Autism is a clearer diagnosis.
We've had to make adjustments in Ben's seizure medication, changing to a different one that caused less behavioral issues. His sleeping patterns have not settled back into the regular good nights of sleep that he was getting before his seizures started. His focus at school was totally shot for a while, which is why he was assigned a one-on-one paraeducator. He's doing much better now in school. We're hopng to figure out the puzzle of sleep and get him back into good nights of sleep on a more frequent basis.
Above all, we are thankful that Ben has not had any more seizures since that day a year ago. About 40% of people do not have any more seizures once starting medication. We are so grateful that Ben is in that group.
And I'm glad that a day that started in a such a terrible, horrible, no good very bad way was able to end on a mostly positive note with a little boy who was doing much better.
One more picture - here he is back at home the next evening. You'd think he would have been exhausted and would have crashed rather rapidly for the night.
You would be wrong.
Here he is in the ambulance:
I still vividly remember how terrified I was to find him on the floor, stiff and whimpering, unable to get any kind of response from him. I tried to sing to him in the car on the way to the ER but could hardly get the words out because my throat was thick with tears. I was so afraid that he was dying, or that he would survive but that something happened that would affect him permanently and change who he was. I got out of the car at the ER drive-up to take Ben in while James and Rachel parked the car. Rachel said to me "Mommy, your face is all wet." She didn't seem to take in the seriousness of what was happening. And in a way, that was a big blessing.
We waited and watched while the medical team got him hooked up to tubes and machines and checked out his vitals. He tried to pull away when they went to put the IV into his arm, and it was good to see a little fight in him. They took him for his CT scan, and brought him back to wait until the ambulance was ready to take him to Mary Bridge Children's Hospital. While we were still in our local ER, the wife of James' former boss, who worked at our local hospital, came down with a nurse friend, and they asked if they could pray with us. I appreciated their calm presence and their ability to pray when it was hard to form words in my own mind.
My mom came to pick up Rachel and take her to school for us. The ambulance arrived, they fastened Ben's carseat onto a gurney and got him buckled in, and I rode with him to Mary Bridge while James followed in our car. Ben cried out when we went out into the cold air to load him into the ambulance, and it was like balm to our souls to hear.
We traveled to Tacoma, then we waited in a room in their children's ER until a regular hospital room was ready for him. We had several people come in to check on him and ask us questions, and some of them would say "He's going to be just fine!"
I was not going to trust and believe that until I saw Ben's eyes open and could see him interact with us and know that he was really still in there. I just needed to see it for myself to feel better.
The medicine that they gave him at the first ER to stop his seizures worked, but it also made him extremely sleepy. So it became a waiting game to see when he would wake up.
After taking Rachel to school, my mom had stopped by our house to get a few things for us, then picked up breakfast and brought it to us. She waited with us at the hospital after that. James' parents came over from Bremerton and waited with us, too. The hospital chaplain stopped by. I wanted to ask him "Are you new here?", because although he was well-meaning, he didn't quite seem to know what to do. It was strange. Ben stirred in the noon hour when the nurses came to mess with his IV, even giving a protest, then he went back to sleep.
Our friend and music pastor, Patrick, came over to be with us, too. By that time, it was mid-afternoon, and I was on the phone with my friend Jennifer, asking her to take Rachel home with her from school (her boys go to the same school). And while I was in the hallway, Patrick stepped out of the room and gestured to me, and I knew my little man had finally woken up. I walked back in to see such a beautiful sight:
He stayed awake for about half an hour before he crashed again for several more hours. We had ordered pizza from the menu for him in case he woke up hungry. He woke up again a little before 7, and we were able to get him to eat, first with some persuading, then with more enthusiasm.
Not too long after dinner, a tech came by to do an EEG on Ben's brain so that they could try to determine if Ben was still experiencing unseen seizures or if there was anything else they needed to see in his brain activity. We were skeptical that he would be able to attach roughly 2 dozen electrodes to Ben's head at all, much less in a way that they would stay adhered long enough for him to run the test. And we didn't think Ben would stay still long enough for the test, either.
Much to our surprise, the EEG tech got every single one of those electrodes on. He had such patience, and when Ben would start to move around, he'd just wait until Ben settled back down. He reapplied a few that Ben loosened, but when all was said and done, everything was on that needed to be. They were hoping to do both waking and sleeping EEGs during that time. I sang to Ben and played some videos on my phone to keep him still during the waking part, then he fell asleep partway through, so it worked out perfectly to do the sleeping EEG, too. We were thankful to God for helping Ben through that.
It was shortly after 10pm when the pediatric neurologist came to go over the results of Ben's EEG. They had had 4 other children with the onset of seizures in the hospital that day, so she was quite busy. It turns out that he was still having little seizures in his left and right frontal cortexes. That, coupled with the lack of a fever or anything else preceding his seizures, indicated that he had epilepsy.
Interestingly, this neurologist started out as an autism specialist before moving into neurology, so in addition to treating Ben's epilepsy, she also performed a more thorough evaluation on him, and his diagnosis was changed from PDD-NOS to Autism. Both are on the autism spectrum, but Autism is a clearer diagnosis.
We've had to make adjustments in Ben's seizure medication, changing to a different one that caused less behavioral issues. His sleeping patterns have not settled back into the regular good nights of sleep that he was getting before his seizures started. His focus at school was totally shot for a while, which is why he was assigned a one-on-one paraeducator. He's doing much better now in school. We're hopng to figure out the puzzle of sleep and get him back into good nights of sleep on a more frequent basis.
Above all, we are thankful that Ben has not had any more seizures since that day a year ago. About 40% of people do not have any more seizures once starting medication. We are so grateful that Ben is in that group.
And I'm glad that a day that started in a such a terrible, horrible, no good very bad way was able to end on a mostly positive note with a little boy who was doing much better.
One more picture - here he is back at home the next evening. You'd think he would have been exhausted and would have crashed rather rapidly for the night.
You would be wrong.
Wednesday, November 6, 2013
Unforeseen Dangers
I'm blogging a lot about our children lately. I guess that's because they're a big part of my day, and my emotion is often driven by what's going on with them. Blogging is a way to process events and, sometimes, unburden myself from things that are swirling around in my mind, or share about our life to help people understand what it's like.
Last night, I was upstairs helping Rachel with something when I heard the worst kind of shriek from Ben, followed by scared crying. If you're a parent, you probably (unfortunately) know that shriek - the "I hurt myself and it's still hurting, and I don't know what to do about it" panicky cry. I ran down the stairs and found him in the living room with a block hanging off of his lip.
It was one of those big Megabloks, the chunky kind that are for younger children. He likes taking 2 of the blocks and putting them together, then pulling them apart, or taking a stack that I've been putting together and taking ALL of them apart. He sometimes uses them in the bathtub, too.
Neither James nor I had anticipated that there would be danger inherent in these blocks, since they're too large to get all the way into his mouth and become choking hazards. But Ben likes to chew and bite on the blocks, which weakens them, and he had caused one of the pegs to get a crack around part of its base. It opened enough to take in his lip, then clamped down.
I managed to get it off of his lip, but his lip was cut either from the block itself or the processing of removing it. Blood ALL OVER, holy cow. It took about an hour, during which we debated going to Urgent Care or seeing if we could stop the bleeding at home, before we got it to come to a stop. The advice to put direct pressure on a lip wound for 10 minutes would not work with Ben, but I was able to do it in short spurts and also got him to suck on an Outshine popsicle, which helped the bleeding to slow down. He also chewed and bit on a cool wet washcloth, which helped to slow things down and absorbed some of the copious amounts of blood. And eventually, we left it alone and watched, and the blood clotted and he stopped actively bleeding.
YIKES.
Sometimes we just can't anticipate the things that he can turn into a danger for himself or others. He got ahold of a glass from the kitchen counter while I was following him downstairs to the kitchen after a diaper change, then dropped it when he saw me, sending glass shards all across the kitchen floor. He took an aluminum can out of the recycling bin last year and cut his thumb so badly that I took him to the ER because I couldn't get it to stop bleeding. I now have a medical superglue to fix a cut at home if someone gets a cut like that happens again, but I couldn't put it on his lip. He'll eat candles, deodorizer beads, pencil erasers, tips of marker pens and all sorts of things.
It's so hard to try to keep one step ahead of him, and sometimes we're not. And then we feel bad when he hurts himself, but we also realize that there's only so much we can anticipate and try to protect him. And we continue to pray that he'll develop a sense of safety so that his environment isn't so hazardous for him and we can one day take down baby gates and remove child-safety locks and stop having to lock all the interior doors of the house so that he doesn't get into our rooms and get into something he shouldn't.
Last night, I was upstairs helping Rachel with something when I heard the worst kind of shriek from Ben, followed by scared crying. If you're a parent, you probably (unfortunately) know that shriek - the "I hurt myself and it's still hurting, and I don't know what to do about it" panicky cry. I ran down the stairs and found him in the living room with a block hanging off of his lip.
It was one of those big Megabloks, the chunky kind that are for younger children. He likes taking 2 of the blocks and putting them together, then pulling them apart, or taking a stack that I've been putting together and taking ALL of them apart. He sometimes uses them in the bathtub, too.
Neither James nor I had anticipated that there would be danger inherent in these blocks, since they're too large to get all the way into his mouth and become choking hazards. But Ben likes to chew and bite on the blocks, which weakens them, and he had caused one of the pegs to get a crack around part of its base. It opened enough to take in his lip, then clamped down.
I managed to get it off of his lip, but his lip was cut either from the block itself or the processing of removing it. Blood ALL OVER, holy cow. It took about an hour, during which we debated going to Urgent Care or seeing if we could stop the bleeding at home, before we got it to come to a stop. The advice to put direct pressure on a lip wound for 10 minutes would not work with Ben, but I was able to do it in short spurts and also got him to suck on an Outshine popsicle, which helped the bleeding to slow down. He also chewed and bit on a cool wet washcloth, which helped to slow things down and absorbed some of the copious amounts of blood. And eventually, we left it alone and watched, and the blood clotted and he stopped actively bleeding.
YIKES.
Sometimes we just can't anticipate the things that he can turn into a danger for himself or others. He got ahold of a glass from the kitchen counter while I was following him downstairs to the kitchen after a diaper change, then dropped it when he saw me, sending glass shards all across the kitchen floor. He took an aluminum can out of the recycling bin last year and cut his thumb so badly that I took him to the ER because I couldn't get it to stop bleeding. I now have a medical superglue to fix a cut at home if someone gets a cut like that happens again, but I couldn't put it on his lip. He'll eat candles, deodorizer beads, pencil erasers, tips of marker pens and all sorts of things.
It's so hard to try to keep one step ahead of him, and sometimes we're not. And then we feel bad when he hurts himself, but we also realize that there's only so much we can anticipate and try to protect him. And we continue to pray that he'll develop a sense of safety so that his environment isn't so hazardous for him and we can one day take down baby gates and remove child-safety locks and stop having to lock all the interior doors of the house so that he doesn't get into our rooms and get into something he shouldn't.
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