Why Churches Need a Place for Children with Special Needs

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.

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:

• 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.

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.

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 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.

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.