Here is the link: Lessons from Jack
Saturday, March 12, 2011
Generosity: Lessons from Jack
Last week, Kim and I were invited to share part of our story at church. Adey gave the teaching and we both spoke as well. It details much of our journey. It was amazing and heart wrenching all at once.
Thursday, March 10, 2011
update #3
Update on Title 19 waiver application:
It is now physically in the right building. However, it is not actually the title 19 waiver. It is something else we were given that doesn't apply to us at all. Great. Stay tuned...
It is now physically in the right building. However, it is not actually the title 19 waiver. It is something else we were given that doesn't apply to us at all. Great. Stay tuned...
Monday, March 7, 2011
wretches and jabberers
Only a few moments before off to bed but AJ and I just got back from viewing Wretches and Jabberers at a screening in Iowa City with friends Tom and Adey. We are completely undone. If my life stops right now then it will have been well-lived just for seeing this film.
I have so many thoughts swirling about it but here's the most insistent:
"God chooses the foolish things of the world to shame the wise, the weak things to shame the strong, the lowly things and the despised things - and the things that are not - to nullify the things that are..."
The marginalized. The oppressed. The outcast. The wretches and the jabberers. I am humbled beyond words and want to soak it up deep into my soul...
Friday, February 25, 2011
Update #2
Well crap.
The funding agency to whom we turned in our grant application and supplementary income waiver (several months ago), for money to reimburse Jack's upcoming therapy costs, lost our paperwork. And we thought we were on the waiting list all this time.
!*&@#&*!
Starting over.
The funding agency to whom we turned in our grant application and supplementary income waiver (several months ago), for money to reimburse Jack's upcoming therapy costs, lost our paperwork. And we thought we were on the waiting list all this time.
!*&@#&*!
Starting over.
Saturday, February 19, 2011
finally an update
Air. Surface. Light. Finally coming up! It has been a long time since my last post, I apologize. This is a tough time of year for us with school and endless cold and being stuck indoors. I feel that even when I sit down to write or be productive, it takes 100 times the effort to get something out. Everything moves in slow motion in Iowa in February. But...
Jack is doing great. First the difficult stuff: last I posted we were in need of a bio-miracle. I wish I could say that over the course of the last 8 weeks we conquered the hat and gloves issue, but we did not. Now we are just hanging in there until March, when we can at least count on more 50 degree days that require fewer layers and more general ease being outside! We had a stormy couple of weeks in January while we battled an ear infection and an endless chest cold. The other night when we were brushing Jack's teeth we noticed he finally got one of his back molars. Poor little guy. I had a difficult awareness recently of how hard it must be for him, that because his communication abilities are so delayed there's just no way he or we can explain anything. He can't tell us that his ear hurts or that his throat is sore and he needs a drink of water. Or that when he woke up and it was dark he felt scared because he didn't know where he was for a minute. Or when he walks out of his room crying and rubbing his neck, and it seems like he probably slept on it funny, I say, "Oh honey, does your neck hurt? Let me rub it and it will feel better in a minute." But he doesn't want me to touch it. I know he doesn't know what I'm saying. Or that it will feel better in a few minutes. If his arm falls asleep while he lays on it, he doesn't know that terrible awful tingly feeling is going to go away and he can't receive comfort from me. I just pray in those moments that God would put his arms around my boy and bring comfort. It seems like a bunch of little things - after all, the tingly feeling will go away, the ear infection will eventually subside, awareness that he is still in his familiar bedroom will come and everything will be normal again. But while his mind and his body keep growing, those little things stack up over the course of the day and I know they affect the way he is experiencing life. So we need some more improvement in that receptive-expressive language area and covet your prayers for increased comprehension.
Now the good stuff!
When he is free from an ear infection and nasty coughing that keeps him up all night, and pain from his big boy teeth coming in, he is just a delight. He has been giggly and interactive and playful. He's doing awesome in his ABA sessions and is picking up all kinds of new stuff, particularly making great strides in imitating and matching pictures with their objects. He loves his train set, jumping on the bed, tackling us, splashing in the tub, reading his books at night and bashing around the Children's Museum. He is forming a bond with Livvie who has declared that she is going to marry her brother Jack. (It nearly brings me to tears as I type that, it is so wonderful.) He is copying our word games. I say, "Jack - who do I love? I....Love...." and he gets a big grin, points at me and says, "DOO!". We do itsy bitsy spider at night, he loves the motions and tries to say a few of the words. I can tell how hard he is trying to get them out and we try to acknowledge his attempts at over-the-top level and make him feel confident about using language. We've suffered some setbacks in food. He is having a lot of trouble using his spoon and is getting picky about what we give him (not so unusual for a not yet 3-year-old, I know). He actually eats better in a high chair. I think he feels comfy and secure in one. But we're trying to treat him like a big boy even if it means less food consumed, more on the floor, and lots of verbal reminders to stay in his chair. We are thinking about trying to get him into a booster seat again, and maybe bringing Livvie into the plan for influence. He seems curious about the things she's doing and she likes being the big sister setting the tone. Win win.
We're having a lot of difficulty with our insurance company. They won't cover any speech therapy, even though recommendations abound from the clinicians we've seen, because his "disability" is developmental and not the result of some sort of accident (like a head injury or a stroke). That is frustrating. We've called numerous times, had various care providers submit claims, tried going through different organizations, and still no luck. Until we can get our state insurance waiver approved (probably not for another year) we might be out of luck. They will however cover occupational therapy up to 80%. Which is timely, since we've recently run into some new sensory issues and have called on our trusted early education agency for help once again. An occupational therapist from Grantwood AEA, Patty, paid us a visit and spent two hours going over the results of Jack's initial evaluation with me. Where Jack tests out on their assessment tool is exceptionally 'high needs' in both the sensation seeking and sensation sensitive categories. Seems contra, I know. What it means is what we already know about him - he needs intense "punched-up" sensory experiences with high physical input (jumping, climbing, wrestling, swinging, spinning, turning upside down, being pushed, pulled, squished, squeezed) and also lots of structure. Bleck. Wasn't excited to hear that. It's exceptionally hard to provide that at home right now because of lots of factors, not the least of which is two other kids doing completely different things, work, school, etc. But she gave us some really great ideas for ways we can incorporate those kinds of experiences into our daily routine and recommended occupational therapy (specifically, Sensory Integration Therapy) for him a couple of times a week. There's a bunch of info unpacked there but here's the summation - it's Disney World for Jack. I think I also want sensory integration therapy.
We notice at night time after we've played and wrestled for an hour and he has exerted himself and been bumped and tossed and turned all over, he is much more receptive. His word attempts are clearer. He can much more easily engage in a story or a song or a snuggle game. He is just so happy. In my novel understanding, the principle behind sensory integration therapy in a case like Jack's is that when we feed the proprioceptive "sense of locomotion" need in a child that is understimulated by their environment, he/she can engage more readily in other activities, ie, listen to a story, put together a puzzle, participate in word play. All children have this need to a degree. Some kiddos with autism experience it to a great extent and it can interfere with their ability to concentrate, play, comprehend, follow instructions, solve problems, etc. It's also not something they're likely to just get over. We're beginning to understand it as a physiologic need that has to be met and trying to figure out ways to incorporate more of it during the transitions of the day.
And the biggest update is that Jack Jack will begin preschool in May, and continue into the summer. I am beyond excited about all the structure of the classroom and the learning opportunities that await. I think it will be so good for him. We just need to get through our IEP meeting in March and start laying out the logistics for what the day is going to look like. I would love your prayers for wisdom for us as we start that process. I'm nervous about it. It feels overwhelming and we don't know what we don't know yet. I do feel confident that God has given us so many wonderful people in our lives who love Jack and are looking out for his very best, and we are leaning on all of you.
And finally, thanks for your continued support. Thanks for asking about him. Thanks for all the ways you give us practical help when things are rough. Every time we are at a low you come to our rescue and we see a reflection of Jesus. I could never say just how grateful and how indebted we are to you. Because of the ways you extend your love into our lives, I find the prayers that spill out lately sounding a lot less like: "Oh God, when when is it going to get better?" to a lot more like: "Oh God, if it never gets better than this, thank you." What a gift we have in our son, all the things he is teaching us (elaborate blog post on this topic by AJ to follow), and what a gift we have in the friends and family around us. Jesus, we are more aware than ever that everything we have has you in it.
Jack is doing great. First the difficult stuff: last I posted we were in need of a bio-miracle. I wish I could say that over the course of the last 8 weeks we conquered the hat and gloves issue, but we did not. Now we are just hanging in there until March, when we can at least count on more 50 degree days that require fewer layers and more general ease being outside! We had a stormy couple of weeks in January while we battled an ear infection and an endless chest cold. The other night when we were brushing Jack's teeth we noticed he finally got one of his back molars. Poor little guy. I had a difficult awareness recently of how hard it must be for him, that because his communication abilities are so delayed there's just no way he or we can explain anything. He can't tell us that his ear hurts or that his throat is sore and he needs a drink of water. Or that when he woke up and it was dark he felt scared because he didn't know where he was for a minute. Or when he walks out of his room crying and rubbing his neck, and it seems like he probably slept on it funny, I say, "Oh honey, does your neck hurt? Let me rub it and it will feel better in a minute." But he doesn't want me to touch it. I know he doesn't know what I'm saying. Or that it will feel better in a few minutes. If his arm falls asleep while he lays on it, he doesn't know that terrible awful tingly feeling is going to go away and he can't receive comfort from me. I just pray in those moments that God would put his arms around my boy and bring comfort. It seems like a bunch of little things - after all, the tingly feeling will go away, the ear infection will eventually subside, awareness that he is still in his familiar bedroom will come and everything will be normal again. But while his mind and his body keep growing, those little things stack up over the course of the day and I know they affect the way he is experiencing life. So we need some more improvement in that receptive-expressive language area and covet your prayers for increased comprehension.
Now the good stuff!
When he is free from an ear infection and nasty coughing that keeps him up all night, and pain from his big boy teeth coming in, he is just a delight. He has been giggly and interactive and playful. He's doing awesome in his ABA sessions and is picking up all kinds of new stuff, particularly making great strides in imitating and matching pictures with their objects. He loves his train set, jumping on the bed, tackling us, splashing in the tub, reading his books at night and bashing around the Children's Museum. He is forming a bond with Livvie who has declared that she is going to marry her brother Jack. (It nearly brings me to tears as I type that, it is so wonderful.) He is copying our word games. I say, "Jack - who do I love? I....Love...." and he gets a big grin, points at me and says, "DOO!". We do itsy bitsy spider at night, he loves the motions and tries to say a few of the words. I can tell how hard he is trying to get them out and we try to acknowledge his attempts at over-the-top level and make him feel confident about using language. We've suffered some setbacks in food. He is having a lot of trouble using his spoon and is getting picky about what we give him (not so unusual for a not yet 3-year-old, I know). He actually eats better in a high chair. I think he feels comfy and secure in one. But we're trying to treat him like a big boy even if it means less food consumed, more on the floor, and lots of verbal reminders to stay in his chair. We are thinking about trying to get him into a booster seat again, and maybe bringing Livvie into the plan for influence. He seems curious about the things she's doing and she likes being the big sister setting the tone. Win win.
We're having a lot of difficulty with our insurance company. They won't cover any speech therapy, even though recommendations abound from the clinicians we've seen, because his "disability" is developmental and not the result of some sort of accident (like a head injury or a stroke). That is frustrating. We've called numerous times, had various care providers submit claims, tried going through different organizations, and still no luck. Until we can get our state insurance waiver approved (probably not for another year) we might be out of luck. They will however cover occupational therapy up to 80%. Which is timely, since we've recently run into some new sensory issues and have called on our trusted early education agency for help once again. An occupational therapist from Grantwood AEA, Patty, paid us a visit and spent two hours going over the results of Jack's initial evaluation with me. Where Jack tests out on their assessment tool is exceptionally 'high needs' in both the sensation seeking and sensation sensitive categories. Seems contra, I know. What it means is what we already know about him - he needs intense "punched-up" sensory experiences with high physical input (jumping, climbing, wrestling, swinging, spinning, turning upside down, being pushed, pulled, squished, squeezed) and also lots of structure. Bleck. Wasn't excited to hear that. It's exceptionally hard to provide that at home right now because of lots of factors, not the least of which is two other kids doing completely different things, work, school, etc. But she gave us some really great ideas for ways we can incorporate those kinds of experiences into our daily routine and recommended occupational therapy (specifically, Sensory Integration Therapy) for him a couple of times a week. There's a bunch of info unpacked there but here's the summation - it's Disney World for Jack. I think I also want sensory integration therapy.
We notice at night time after we've played and wrestled for an hour and he has exerted himself and been bumped and tossed and turned all over, he is much more receptive. His word attempts are clearer. He can much more easily engage in a story or a song or a snuggle game. He is just so happy. In my novel understanding, the principle behind sensory integration therapy in a case like Jack's is that when we feed the proprioceptive "sense of locomotion" need in a child that is understimulated by their environment, he/she can engage more readily in other activities, ie, listen to a story, put together a puzzle, participate in word play. All children have this need to a degree. Some kiddos with autism experience it to a great extent and it can interfere with their ability to concentrate, play, comprehend, follow instructions, solve problems, etc. It's also not something they're likely to just get over. We're beginning to understand it as a physiologic need that has to be met and trying to figure out ways to incorporate more of it during the transitions of the day.
And the biggest update is that Jack Jack will begin preschool in May, and continue into the summer. I am beyond excited about all the structure of the classroom and the learning opportunities that await. I think it will be so good for him. We just need to get through our IEP meeting in March and start laying out the logistics for what the day is going to look like. I would love your prayers for wisdom for us as we start that process. I'm nervous about it. It feels overwhelming and we don't know what we don't know yet. I do feel confident that God has given us so many wonderful people in our lives who love Jack and are looking out for his very best, and we are leaning on all of you.
And finally, thanks for your continued support. Thanks for asking about him. Thanks for all the ways you give us practical help when things are rough. Every time we are at a low you come to our rescue and we see a reflection of Jesus. I could never say just how grateful and how indebted we are to you. Because of the ways you extend your love into our lives, I find the prayers that spill out lately sounding a lot less like: "Oh God, when when is it going to get better?" to a lot more like: "Oh God, if it never gets better than this, thank you." What a gift we have in our son, all the things he is teaching us (elaborate blog post on this topic by AJ to follow), and what a gift we have in the friends and family around us. Jesus, we are more aware than ever that everything we have has you in it.
Thursday, December 16, 2010
bio-miracle needed
For all who have been on depression hiatus, the sun is peeking through again. Things are going much better in the last week! Your prayers are felt on every level. Jack's cold has subsided and his disposition is much more agreeable. His language/communication the last several days has been adorable. He is trying to say lots of things, doing great with imitation, having pretend conversations with his cute babble sounds, and indulging nightly in his favorite bedtime ritual: taking all of his clothes off and running around his bedroom naked with Livvie, while we toss them on the bed. It is night and day difference around here from 4 weeks ago.
And here's a really great update - we have conquered the coat issue (knock on wood)! We have been getting him to wear a coat and boots with less and less drama each time. We do it together - everyone gets their boots and coats on, and he seems motivated enough by the idea that we're all going somewhere together to eventually tolerate wearing his. So yippee for that! But along that vein, here is what is not going so well:
I think I need body armor.
I mentioned in my last post the hat and mittens thing is a big problem right now. He just hates them so much. I can't get them on. I've tried everything - different kinds of hats, different kinds of gloves, candy, cookies, going outside without him...nothing works. I've even let him go outside without them for a bit, so he can see how much fun it is out there, but his fingers get wet and cold and after 5 minutes he's crying to go inside. It seems at this point there just isn't anything that is motivating enough to outweigh how much he hates the way they feel. And however frustrated I get in the moment, it must be ten times worse for him. He resists with such fervor that the psychological distress I could only guess he is experiencing becomes palpable. If he could tell me about it, I think this is what he would say:
"Mom. I HATE this freaking hat. I can't stand these stupid gloves. I want to wiggle my fingers. They are touching my wrists. I want to pick stuff up. This hat is driving me crazy. It makes my head feel itchy. I don't like how it touches my face. It covers my ears and makes things sound funny. Pleeeeease stop making me wear this stuff!"
So this morning I dropped Livvie off at preschool, came home and put Camille down for a nap so we could work on it together, just Jack and me. It did not go well, and every attempt ended with hysteria. Today I surrender, at least until dad gets home! If it were just Jack, I swear, I would stay inside all winter if it would spare him the torment of getting all covered up. But Livvie is in love with the snow, and it's so good for us to get a break from the indoors when we can. She wants to play with her brother and her mom and dad without all this hysteria. So I guess we will keep trying until we get there!
In the meantime, what we need is a biological miracle (thank you Adey, perfectly put!) Here's how we're praying:
Jesus, help Jack! Would you lessen the severity of this specific sensory issue? Help him be able to tolerate a hat/gloves/snow pants so that he can experience how much fun it is to play in the snow. So that he can chase Livvie and build tunnels and ride in the sled and just burn his wonderful insane level of boy-energy in a really enjoyable way. Bring peace to his sensitive little body!
Thanks for your continued prayers, we'll let you know how it's going!
I think I need body armor.
I mentioned in my last post the hat and mittens thing is a big problem right now. He just hates them so much. I can't get them on. I've tried everything - different kinds of hats, different kinds of gloves, candy, cookies, going outside without him...nothing works. I've even let him go outside without them for a bit, so he can see how much fun it is out there, but his fingers get wet and cold and after 5 minutes he's crying to go inside. It seems at this point there just isn't anything that is motivating enough to outweigh how much he hates the way they feel. And however frustrated I get in the moment, it must be ten times worse for him. He resists with such fervor that the psychological distress I could only guess he is experiencing becomes palpable. If he could tell me about it, I think this is what he would say:
"Mom. I HATE this freaking hat. I can't stand these stupid gloves. I want to wiggle my fingers. They are touching my wrists. I want to pick stuff up. This hat is driving me crazy. It makes my head feel itchy. I don't like how it touches my face. It covers my ears and makes things sound funny. Pleeeeease stop making me wear this stuff!"
So this morning I dropped Livvie off at preschool, came home and put Camille down for a nap so we could work on it together, just Jack and me. It did not go well, and every attempt ended with hysteria. Today I surrender, at least until dad gets home! If it were just Jack, I swear, I would stay inside all winter if it would spare him the torment of getting all covered up. But Livvie is in love with the snow, and it's so good for us to get a break from the indoors when we can. She wants to play with her brother and her mom and dad without all this hysteria. So I guess we will keep trying until we get there!
In the meantime, what we need is a biological miracle (thank you Adey, perfectly put!) Here's how we're praying:
Jesus, help Jack! Would you lessen the severity of this specific sensory issue? Help him be able to tolerate a hat/gloves/snow pants so that he can experience how much fun it is to play in the snow. So that he can chase Livvie and build tunnels and ride in the sled and just burn his wonderful insane level of boy-energy in a really enjoyable way. Bring peace to his sensitive little body!
Thanks for your continued prayers, we'll let you know how it's going!
Wednesday, December 8, 2010
ain't no sunshine
Warning
This post contains depressing material that may not be suitable for some enjoyment seekers. Ain't no sunshine here. Move along if that's you and check back in a few weeks.
It's so hard right now. So hard. And that feels like a ridiculous understatement. I've been trying to write this post for over a week but when I sit down, I can't write it. I try to think of how to boil down what makes this so impossible some days, lots of days, and I just cry instead. A couple of weeks ago we had a visit from our parent-child educator, one of the members of the AEA team that sees Jack regularly. We were having a terrible morning of explosive fits. And when she and I sat down on my living room floor, and I began to describe what the days are like, I just lost it and started sobbing. All I could squeak out was, "I'm so tired." And of course it's so much more than that, but in those moments I can't even get it out. I don't know what to say. I just feel overwhelmed and hopeless.
I have tried to describe Jack's diagnosis in a way that I feel makes it the most understandable to an onlooker. I think in my first post I said that in his particular case, PDD-NOS might resemble a "mild" form of autism. And that's the best I can do to make it relatable to something people might know something about. But I feel I've done a grave injustice to perception by using the word "mild". Because "mild" autism is frequently unbearable. Where we feel it the most, apart from the language difficulty, is tantrum behavior. I have had a toddler with normal development - that kind of tantrum is not at all what I'm talking about. I'm talking about extended, explosive, violent, unpredictable meltdowns. The kind that causes injury to his self, or me when I intervene. We both have bruises. He often has scrapes and knots on his head from banging. And over what? Anything and everything. Even though he's two, the bulk of the problem really isn't hearing "no", like it was with Olivia. Often the worst tantrums arise from sensory things he can't talk about that are driving him crazy. One blogging mother I've come across who has a little boy with PDD-NOS talks about her son's sensory issues this way:
"Do you ever have a shirt that has a tag on the back that rubs you the wrong way? Does the sound of nails on a chalkboard raise the hairs on your arms? Imagine sitting in a room wearing a shirt that has 1000 of these tags with everyone around you running their nails down chalkboards. Thats just the tip of iceberg."
So here's what it looks like on a normal day. Take just one example, going outside to play in the season's first snow. I am inside getting all the kids dressed to go out. I save Jack for last because I know it's going to be hell. Putting on boots, gloves, snow pants, hat, coat. Misery. He hates it all. He doesn't want anything on his head or his hands. He doesn't want a coat. He doesn't like the way it feels on his wrists. I know because he often freaks out over putting on a long-sleeve shirt, or a sweatshirt or a jacket (not always, but often) and tugs and pulls at the sleeves until I roll them up. He now hates boots because when we put them on he knows we're going outside. He doesn't want to go outside because he'll be cold. Why will he be cold? Because he won't wear gloves or a hat. He just pulls them off. I have even tried rubber banding the gloves underneath his coat before applying a hat that velcros so he can't pull it off. But he'll rip the gloves off with his teeth and then take his hat off. He did the same thing last winter and it took several weeks acclimating to cold weather gear until he was used to it and would handle it. But last year he weighed less. He's now a 40-pound kicking screaming mass of muscle. I literally have to wrestle him to the ground and sit on him to put on his coat. Every day. And even once we actually accomplish getting outside, it's screaming in the snow for the duration of our outing, or banging his head against the porch steps or the car, while I try to keep him from hurting himself, all while holding an 8-month-old and trying to pull a 4-year-old on a sled. And even after I relent and bring us all back inside, the damage is done. We're now on a short live wire that continues to be set off all day over nothing at all. So what's the alternative? Stay inside all winter where no coats need be worn? That is death by a different method. It's just awful. I have no idea how I'm going to make it through the cold season. This is one example but it could be anything. It could be that I offered the toy train instead of the toy car. It could be that I turned on the wrong movie or pulled the wrong book from the shelf. It could be that I started singing in the kitchen. Or that I gave him the red cup at lunch. Then the blue cup. Then I took both cups back and gave him the green one with a fun twisty straw...still not good enough. It could be that I'm not posed exactly the way he wants when I'm sitting next to him on the floor. It could be that my hair is down and not in a ponytail. It could be his socks. Or his shirt. Or his pants. Or his shoes. And in 10 seconds, we're in a stage 5 meltdown. It's that fast and that furious.
I recently laughed with a friend at how I'm fighting to not always control every interaction between Jack and the world. There is a show called Parenthood that has a subplot involving a family with a little boy with Asperger's. I haven't seen it, but my friend described an episode to me where the mother hovers around the little boy, always intercepting the therapy team that sees him: "Ooo. Don't give him that crayon. He hates the color green. No don't give him the yellow one either, he hates that one too, it'll make him mad. Whoops - he doesn't like the sound of that toy, can you put it away? Fuzzy stuffed animals - no he doesn't like those, don't put it so close to him" and of course we laugh at how ridiculous it sounds. Crazy helicopter mom trying to control every experience her kid is having. And I can laugh too, because I often find myself doing the same sort of things. But here's the striking reality from an inside perspective: as the mom of a child on the autism spectrum, it is 24 hours a day, 7 days a week of standing between your kid and disaster which strikes for no apparent reason. It is never getting a break, doing your damnedest to stay ahead of the tantrum triggers, because when they happen it is all consuming and miserable for every member of the family. It is dealing with the possibility that unlike other two-year-olds, they might not leave this stage behind. I get it.
I would guess that we maybe have 1 day a week where he is really just great and fine about everything. The other days it is the hat and gloves story all day long. I told Jesus in the shower recently that I need it to get easier somehow. Either Jack gets easier, or I need to get better at this. Because I am struggling. AJ and I have hit an awareness that we need him to go to school. And let me tell you how it feels to wonder if you can only be a good parent to this kid if he is gone most of the day: shitty.
All this long narrative to say, I'm not looking for advice or suggestions (I know you wouldn't give it anyway!). Just a place to say how difficult it is. How worn down I feel. And ultimately, how much I need the kind of help I can only get from the Holy Spirit. Pray to this end for me, friends.
This post contains depressing material that may not be suitable for some enjoyment seekers. Ain't no sunshine here. Move along if that's you and check back in a few weeks.
It's so hard right now. So hard. And that feels like a ridiculous understatement. I've been trying to write this post for over a week but when I sit down, I can't write it. I try to think of how to boil down what makes this so impossible some days, lots of days, and I just cry instead. A couple of weeks ago we had a visit from our parent-child educator, one of the members of the AEA team that sees Jack regularly. We were having a terrible morning of explosive fits. And when she and I sat down on my living room floor, and I began to describe what the days are like, I just lost it and started sobbing. All I could squeak out was, "I'm so tired." And of course it's so much more than that, but in those moments I can't even get it out. I don't know what to say. I just feel overwhelmed and hopeless.
I have tried to describe Jack's diagnosis in a way that I feel makes it the most understandable to an onlooker. I think in my first post I said that in his particular case, PDD-NOS might resemble a "mild" form of autism. And that's the best I can do to make it relatable to something people might know something about. But I feel I've done a grave injustice to perception by using the word "mild". Because "mild" autism is frequently unbearable. Where we feel it the most, apart from the language difficulty, is tantrum behavior. I have had a toddler with normal development - that kind of tantrum is not at all what I'm talking about. I'm talking about extended, explosive, violent, unpredictable meltdowns. The kind that causes injury to his self, or me when I intervene. We both have bruises. He often has scrapes and knots on his head from banging. And over what? Anything and everything. Even though he's two, the bulk of the problem really isn't hearing "no", like it was with Olivia. Often the worst tantrums arise from sensory things he can't talk about that are driving him crazy. One blogging mother I've come across who has a little boy with PDD-NOS talks about her son's sensory issues this way:
"Do you ever have a shirt that has a tag on the back that rubs you the wrong way? Does the sound of nails on a chalkboard raise the hairs on your arms? Imagine sitting in a room wearing a shirt that has 1000 of these tags with everyone around you running their nails down chalkboards. Thats just the tip of iceberg."
So here's what it looks like on a normal day. Take just one example, going outside to play in the season's first snow. I am inside getting all the kids dressed to go out. I save Jack for last because I know it's going to be hell. Putting on boots, gloves, snow pants, hat, coat. Misery. He hates it all. He doesn't want anything on his head or his hands. He doesn't want a coat. He doesn't like the way it feels on his wrists. I know because he often freaks out over putting on a long-sleeve shirt, or a sweatshirt or a jacket (not always, but often) and tugs and pulls at the sleeves until I roll them up. He now hates boots because when we put them on he knows we're going outside. He doesn't want to go outside because he'll be cold. Why will he be cold? Because he won't wear gloves or a hat. He just pulls them off. I have even tried rubber banding the gloves underneath his coat before applying a hat that velcros so he can't pull it off. But he'll rip the gloves off with his teeth and then take his hat off. He did the same thing last winter and it took several weeks acclimating to cold weather gear until he was used to it and would handle it. But last year he weighed less. He's now a 40-pound kicking screaming mass of muscle. I literally have to wrestle him to the ground and sit on him to put on his coat. Every day. And even once we actually accomplish getting outside, it's screaming in the snow for the duration of our outing, or banging his head against the porch steps or the car, while I try to keep him from hurting himself, all while holding an 8-month-old and trying to pull a 4-year-old on a sled. And even after I relent and bring us all back inside, the damage is done. We're now on a short live wire that continues to be set off all day over nothing at all. So what's the alternative? Stay inside all winter where no coats need be worn? That is death by a different method. It's just awful. I have no idea how I'm going to make it through the cold season. This is one example but it could be anything. It could be that I offered the toy train instead of the toy car. It could be that I turned on the wrong movie or pulled the wrong book from the shelf. It could be that I started singing in the kitchen. Or that I gave him the red cup at lunch. Then the blue cup. Then I took both cups back and gave him the green one with a fun twisty straw...still not good enough. It could be that I'm not posed exactly the way he wants when I'm sitting next to him on the floor. It could be that my hair is down and not in a ponytail. It could be his socks. Or his shirt. Or his pants. Or his shoes. And in 10 seconds, we're in a stage 5 meltdown. It's that fast and that furious.
I recently laughed with a friend at how I'm fighting to not always control every interaction between Jack and the world. There is a show called Parenthood that has a subplot involving a family with a little boy with Asperger's. I haven't seen it, but my friend described an episode to me where the mother hovers around the little boy, always intercepting the therapy team that sees him: "Ooo. Don't give him that crayon. He hates the color green. No don't give him the yellow one either, he hates that one too, it'll make him mad. Whoops - he doesn't like the sound of that toy, can you put it away? Fuzzy stuffed animals - no he doesn't like those, don't put it so close to him" and of course we laugh at how ridiculous it sounds. Crazy helicopter mom trying to control every experience her kid is having. And I can laugh too, because I often find myself doing the same sort of things. But here's the striking reality from an inside perspective: as the mom of a child on the autism spectrum, it is 24 hours a day, 7 days a week of standing between your kid and disaster which strikes for no apparent reason. It is never getting a break, doing your damnedest to stay ahead of the tantrum triggers, because when they happen it is all consuming and miserable for every member of the family. It is dealing with the possibility that unlike other two-year-olds, they might not leave this stage behind. I get it.
I would guess that we maybe have 1 day a week where he is really just great and fine about everything. The other days it is the hat and gloves story all day long. I told Jesus in the shower recently that I need it to get easier somehow. Either Jack gets easier, or I need to get better at this. Because I am struggling. AJ and I have hit an awareness that we need him to go to school. And let me tell you how it feels to wonder if you can only be a good parent to this kid if he is gone most of the day: shitty.
All this long narrative to say, I'm not looking for advice or suggestions (I know you wouldn't give it anyway!). Just a place to say how difficult it is. How worn down I feel. And ultimately, how much I need the kind of help I can only get from the Holy Spirit. Pray to this end for me, friends.
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