A Change In Plans

Nate and I had ended the summer thinking that we would focus our energies on homeschooling this fall and working Michael’s RDI program.  I was going to learn how to cope with my increased ADD symptoms.  I had very high hopes for lots of change.

Well, it came.  Michael suddenly regressed again, pretty severely.  Oh, and Nate and I got a little surprise.  Turned out I was pregnant.

Soooo, September and October ended up looking very differently than originally intended.  My first trimesters are always fairly brutal, and I spent two months on the sofa watching Michael spiral out of control and barely had the strength to deal with it.  It was a pretty dark time for me.  I felt very helpless to do anything about his situation and a bit like a negligent parent in that I could not provide the structure and routine at home he so obviously needed.  Feeling nauseous and exhausted 24/7 wasn’t really helping my outlook either.

In hindsight, I can see God was still taking good care of us and walking with us.  As usual, our family stepped up to the plate and gave us invaluable assistance.  God also put us on the hearts of some church people as well, and suddenly we had food and help at a time when I could do almost nothing.  He encouraged me along the way through various people and gave me the words I needed to hear to persevere.  We got some answers to Michael’s health picture, and he began to stabilize.  He still has a way to go, but at least we’re moving in the right direction again.

At twelve weeks pregnant, I’m finally starting to feel better.  I can do things!  Michael’s getting a more focused homeschooling program, and my house isn’t a complete disaster.  The kids are eating real food instead of cereal.  Nate and I are totally thrilled at the prospect of another baby joining us soon, we’d been considering another addition in the future anyway.  Things are still tough, but improving, and God’s hand and encouragement has been everything.

It’s been awhile since the last post, so here are some pictures of my beautiful babies!

Gabriel is doing fantastically.  He has a very intense therapy schedule this fall (six sessions a week!), but he’s showing vast improvement.  His speech is intelligible most of the time, and the OT work has improved his coordination by leaps and bounds.  His special instructor is working on his ability to process information and follow directions, and he is showing progress there as well.  I feel like he may not need therapy much longer.

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I absolutely cannot resist this face.  William is the welcome wagon at our house and always runs to the door with enthusiastic greetings for whoever comes.  He is developing by leaps and bounds.  His vocabulary is impressive and his relational skills are just plain fun.  God was good, and after an acupuncture session, his liver issues seem to have been taken care of, and he is no longer in constant abdominal pain.  Of course, he’s making up for that by growing four teeth in right now, but he’s a trooper about it and completely adorable at the same time.

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Michael is into all things rocket science right now.  He can’t really read (I’m beginning to suspect we might be dealing with some sort of visual processing problems) and numbers still seem kind of abstract to him, but he is always happy to lecture on shuttles with rocket boosters and fuel tanks.  We watch lots of documentaries online about NASA (thank God for the internet), and it’s something fun we can do together as rocket science was one of my interests in college.  We do many outer space themed homeschooling lessons, it’s a great way to keep his attention.

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I was just thinking of the chorus to Tindley’s’ hymn “Beams of Heaven”.

“I do not know how long ’twill be,
nor what the future holds for me,
but this I know: if Jesus leads me,
I shall get home someday.”

We’re gonna get there.  Somehow and someway.

I’ll try not to stay away so long this time.  Happy Thursday to you all!

P.S.  Shameless plug here:  Nate started writing a blog recently about what it’s like to be a dad with special needs kids.  It’s aimed at fathers, to encourage them to stay the course.  Here’s the link!  Not A Curse

My Billboard

God either has a sense of humor, or he knows that I can’t pick up on subtle and need a big old billboard sized sign that he’s got things covered.  The day after my big meltdown, I saw this:

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Michael was trying to each Gabriel words from the vocabulary cards!!

I sometimes joke that I live with schizophrenics because of the extreme ups and downs the boys go through in short periods of time, but I needed to see this, a reminder of how far we’ve come.  Michael’s therapist is very pleased at the progress he is making and feels that he may soon be ready to begin the actual therapy, now that he is starting to understand physical control over his own body.  While he still may flail and act out, it’s not as often as it used to be, and he now has times when he can calm himself without any more assistance than a verbal reminder.  He does seem to genuinely try to connect with others every now and then, though it’s still in a very controlling and autistic way.  I’m looking forward to seeing some of the RDI progress, watching him learn to work with and learn from others.

And just to make sure life didn’t get boring, I think Gabriel’s starting to potty-train himself.  Should make for an interesting few weeks!  I’ll just keep repeating my mantra: God is good, and he’s up to something.

Happy Thursday! 🙂

Inventing Games

Michael’s therapist is pleased with the progress he’s been making.  I too have noticed that aside from the sensory issues we’re actually cruising along alright for the moment with just a few bumps in the road here and there.  Being outside a lot this summer has been helping, something we could not do last year.  (Going out alone with a brand new baby, a two year old who could not follow directions, and an impulsive four year old was just not in the cards.)  He’s periodically asking to do school work, and while it’s just busy work he’s doing on his own, it’s getting him ready, his fine motor skills are improving, and I’m happy.

One of the things I have to really apply myself to right now is inventing educational games.  If I try to teach Michael traditionally, it is most definitely going to turn him off to school and we will in no way be able to develop a teacher/student relationship, something he’s not capable of right now.  He just can’t comprehend that someone has a concept that they want him to absorb.  His therapist wants to slowly start teaching him how to work in sync with another person.  This is not just doing something in synchronized motion or even just turn taking, but truly doing an activity with another person in such a way that even if he is just sitting and watching, he is still fully engaged in what the other person is doing.  He absolutely cannot do this even a little right now. This will slowly start training his brain on how to be a student.

While a lot of this stuff is accomplished in our kitchen or laundry room, I’m looking to invent a series of educational games for him so that I can tell the school district he’s learning his letters, numbers, reading, etc.  I’m not great at doing stuff like this in the spur of the moment, so I have to sit down and plan them in advance.  They have to have at least four different kinds of parent/child relationship role playing, probably include some sort of physical activity for some of them, be a topic that he’s actually going to be interested in to stimulate the ADD portion of his brain, and only last 3-5 minutes in length.  I also have to figure out a way to keep him from hyperfocusing on something he really enjoys as well.  Sooooooooooooo….. I’m really curious to see what I come up with!!

I’m starting to have a few regular parenting moments with the kids, and it’s really warming my heart.  We’ve never had these before.  Michael and Gabriel are finally starting to coordinate some of their play together, and they seem to really be getting a kick out of each other.  Of course they fight a lot more now like regular brothers too, but that’s another story.  Gabriel was coloring a picture of some dinosaurs I gave him yesterday, and he announced, “Look, Mommy!  I coloring blue!  See??  The astronaut fighting the dinosaurs!”  (You can totally see the Michael influence there.)  The two little ones seem to be going through growth spurts and are doing some extra napping in really random fashions.  All three of them are as brown as little roasted peanuts from being in the sun nearly every day, and when they’re actively engaged in an activity, they’re adorable.  It’s nice to finally be able to communicate with these little guys after so many years, and I’m slowly learning their triggers and am finally able to preempt some of their crises.  Combining that with me getting some help for my ADD and my ability to run the house a bit more efficiently, things are looking a bit better around here, for which I’m grateful.  It’s still not easy, but at least I don’t feel like I’m just moving from one disaster to another.

I even started the second draft of my novel.  Sure, the boys were splashing in the pool and the baby was crawling all over me when I was writing, but I did it!

Hope you all have a lovely Thursday.

A Day In The Life

The last couple of days have definitely been interesting.  You never know what kind of day you’re going to get with Michael.  Some days his brain and body are in sync and you’d never know he was autistic, but then you have days like today….

We started out OK, but he totally hyper-focused and colored for two hours, and I should have known I’d pay for it later.  He went nuts and overcompensated with the sensory processing disorder kicking in.  He was running everywhere, touching things compulsively, pushing his brothers, screaming, squeaking, and losing his communication and self control.  When his therapist showed up in the early afternoon, he sneaked into the cookie jar and ate six Hershey kisses while she and I were in one of the bedrooms talking.  What followed was a 45 minute meltdown which required physical manhandling.  Thank God the therapist was there, it was the first time she had seen him lose it that badly.  She showed me how to wrap my body around his to keep him from breaking free and punching me.  She also kept the other kids out of the room every time they tried to come in.  Michael really took me for a ride, screaming, crying, writhing, wrestling, and flailing with almost no breaks for three quarters of an hour.  We were finally able to talk him down (I would have never been able to do this if I was alone), but by the time we were finished, I was exhausted, shaking, and nearly crying myself.  Thank God Nate came home this evening in time to handle another meltdown because honestly, I don’t think I have another fight left in me tonight.

As I write this, I’m sitting in Gabriel and William’s room, trying to train Gabriel to stay in his bed.  He’s new to the toddler bed and he seems to enjoy keeping William up till very late and jumping into his crib and squashing him.  It’s been a very long day and there’s still a lot to get through tonight.

I have to say though that it helps to remember that this is all important.  It’s a training ground and the foundation for discipline and growth for all of them.  The hard work and effort is totally worth it, and I look forward to seeing the fruits of all the labor in the hopefully not-too-distant future.  I try to use these opportunities to hold these boys up in prayer and remember that none of this took God by surprise, and none of these experiences is wasted.

Hang tough, all of you.

Self-Regulation

Life has settled into a steady rhythm here, but it’s been one of management, not progress.  We’re making it through the day but not much more at this point, and it’s time for our family to take a breath and hit things head on again.

We had an excellent meeting with Michael’s RDI consultant last night, and we are working hard to find step one in his autism remediation.  Right now that seems to be self-regulation.  Michael is brilliant yet trapped in his own world thanks to the autism and almost completely without windows or doors right now thanks to his sensory processing disorder.  His brain will just not leave his body be, and the last week or so has been marked with his inability to sleep and his body’s sensory seeking behavior (crashing into things, screaming at any type of sensory input, the need for heavy muscle work, the complete lack of personal and physical boundaries).  We did go back to the doctor, and I’m hopeful the current treatment will significantly help but it still has not taken it’s full effect, and in the meantime, his brain seems to be struggling to find balance.

Our goal is to ultimately teach his brain and body to self regulate.  Our first method was a good start, but like with all trial and error methods we didn’t quite hit the mark with our first attempt, and now we’re adjusting our technique.  We’re working on separating problems of compliance from problems of self-regulation and attempting different approaches for each.  Again, it’s hard work that will most likely take a long time, but I’m excited at the prospects of watching him progress again.  I don’t like the plateau we’ve settled on or how long we’ve been there.

Is something in your way?  Does overcoming it seem hard or that it will take too long?  Crash into it anyway!  The prize at the end will be worth it!

 

Birthdays and Sleep

Michael’s been missing his birthday, even though his party was six months ago.  This is something my brain totally doesn’t understand but yet has to deal with.  Just about every morning he wakes up, when I greet him with a cheery “Good morning!”, he responds with “I’m sad.  My birthday’s all gone.”  Sometimes that’s it, but sometimes it escalates into more crying, more anxiety, total withdrawal from what’s going on around him.  It doesn’t sound like a big deal, but now he can’t get dressed.  He can’t pay attention.  He can’t make it to the breakfast table.  And I have two little ones who also need changing and dressing and feeding who are crying because they’re hungry too.  It can be a mess.

I have no idea what this is.  I’ve heard autistic people can sometimes have a delayed emotional reaction.  If this is that, it seems pretty extreme.  It could also be that he has a ton of family members (yes, it’s actually a ton), and they’ve all been having birthdays recently, so maybe it’s just triggering a memory for him.  Or it could be he’s upset about something else and doesn’t have the vocabulary to tell me what it is.  As a fairly concrete person myself who just likes to march in a fix a problem, this whole affair is a bit too nebulous for me.

A lot of family and friends have had some nice ideas about hosting little birthdays, or unbirthdays, and the thought is nice, but it’s made me a little wary.  I have no idea how that will translate into his head.  He would never understand an unbirthday.  In his mind, if there’s a party, cake, or gift, it’s a birthday.  Then I wouldn’t want him used to having “birthdays” more often.  And let’s not forget that he was SO excited about his real birthday last November that it actually made him sick and more autistic for almost a whole month after.  It doesn’t help that it’s right on top of the Christmas season.  He didn’t recover from the all excitement until February.

His RDI therapist had some great ideas about how to cope with this, and they’ve been working!  One time, when we were in the living room, he spontaneously fell into my lap having one of these spells, and I picked up a plastic toy pie from the floor, sang him happy birthday, and had him blow out the pretend candles.  Because we used a toy, he knew it was only make believe, but living the memory seemed to be a temporary holdover for him.  She also recommended we show him pictures of his party, so I did that, and he was thrilled to see his cake again.

*Side note: This cake was a huge deal for him.  He started asking for an Iron Man cake four whole months before his birthday.  He reminded me EVERY SINGLE DAY that he had to have an Iron Man cake for his birthday.  He was SO excited when a friend came over to help me make one (because I had no idea where I was going to find a dairy free Iron Man cake, and I wasn’t paying for a special order).  He went nuts and loved it, and now it’s one of the things he cries that he misses.

The famous cake

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We’ve also been trying to help him sleep better at night.  Despite my effort to keep him outdoors for hours at a time, his body is often quite restless at bedtime, and he won’t fall asleep till hours after he’s been put to bed.  I’ve noticed he’s often much calmer in enclosed spaces, so we pulled the baby’s pack ‘n play out of the attic, filled it with blankets and pillows, and that’s his little man cave for when the world’s a little too overwhelming for him.  He seems to alternate between the pack ‘n play and his bed throughout the night, but he’s not calling out for us or disrupting his brothers quite as often, so this has been a good development.  He’s too big for the pack ‘n play and really needs a larger “sleeping box” at this point, but we’re still in the planning stages of that.

Last night, Nate and I came home very late from church, and my parents had put the children to bed.  True to form, Gabriel and William were totally asleep, and Michael was still energetically bouncing about, unable to relax.  When the birthday talk started again, I printed out a little page with his party pictures on it and put him in his pack ‘n play with the page.  He was so happy just looking at everything and narrating each of the pictures that I thought for sure he would be up for at least another hour.

Five minutes later, I found this.

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And his sleeping partner.

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We do whatever we gotta do to get some sleep, am I right?? 🙂

Happy Thursday!!

Exercise and Sleep

Exercise seems to be emerging as another piece to Michael’s puzzle.  We always knew that it was very important for him to move around, but it amazed me this week to see how strongly the lack of exercise affected him.  With the gorgeous weather last week, we spent hours and hours outside.  The boys would run around, help with clearing the brush, Michael would climb our tree and jump off his playhouse.  With the rain we had Monday and Tuesday we had to stay inside, and immediately by Monday night he could not sleep.  Tuesday was absolutely horrible.  The kids were grouchy, tired, and hyper, which is pretty much their worst combination ever.

We visited with our RDI consultant again Wednesday.  We are still trying to walk Michael through his self control training.  It’s very hard right now.  He doesn’t want to cooperate, and I have to carry him a lot, but when I can run preventative interference for him, he does well.  Now we have to figure out how to weave the exercise factor into this.

I worked at it very hard yesterday.  We spent an hour at the park in the afternoon and another hour outside after dinner.  The boys had a lot of fun and burnt a lot of energy but were clearly tired at the end of the day.  It was the first time I saw Michael VOLUNTEER to go to bed!  I was so excited, but then in his usual fashion, as soon as he was in bed, he went from sleepy to wide awake and could not pass out.  He bounced around in bed for two hours, though I guess I should be grateful it was not his typical three hour stretch to sleep.  It didn’t seem like a good trade-off though, two hours of outside time for one less hour of sleeplessness.  We’re gonna keep up with the outside thing, and I’m really hoping there’s a good cumulative effect.  At the very least, he didn’t wake up in the middle of the night, and that’s a really big deal.  I do hope we find a good exercise/sleep rhythm for him.

May you all have a very blessed Easter!!

Trial and Error

It’s been a week of trial and error, for me and the kids.  A lot of the week has been spent in Michael’s physical boundaries training.  We’ve had to check in daily with our consultant and we met with her again on Wednesday.  This is a refine-as-you-go kind of process, so we are visiting with her a little more often to discuss things, which is very good because we found what we were doing was not working.  Now that we’ve tweaked our approach a little, it seems to be going better.  A lot of time has been spent on this, because it requires me to stop whatever I’m doing and physically walk Michael through something.  Then I usually forget what I was doing and start something new. 🙂

It’s been nice to see the progress the children are making.  Michael is a little calmer and Gabriel is trying to speak more.  His new sentences are hysterical!  We eliminated something that William appeared to be allergic to, and now his liver seems to be functioning much better, and he is back to his busy self again, emptying drawers as I just follow and clean up behind him.  I turned the TV off about two weeks ago when the weather turned nice and have been trying to take the three of them outside as often as possible.  The leap in their mental development has been astounding!

I know a lot of my stress and craziness is due to the fact that I tear into my day without much of a plan.  I’ve struggled balancing the need for a plan with not holding onto the plan that tightly because the children usually blow it to pieces pretty quickly.  I keep striving for that 1 Peter description of a gentle and quiet spirit.  I seem to get anxious and upset more than gentle and quiet, and I know the chaos around me has a lot to do with that.  I’m still trying to find the right rhythm for our family life and chores right now.  There’s been a lot of trial and error, but I hope we’re getting close.  I still want to be the person, wife, and mother God wants me to be, and I know how I run my house has a lot to do with that.  Here’s praying for answers!

Learning Boundaries

Nate and I had another incredibly informative session with our family’s RDI consultant last night.  After being congratulated on looking more awake this time around (woot!), we started discussing our successes and difficulties with regards to communicating and working with Michael.  There have been very extreme steps forward and backward depending on how he is feeling, but overall, Michael has made excellent progress since we have implemented the program several months ago.  He is slowly and painfully modifying his speech, he is truly trying to communicate original thought, though it is still often wrapped in pre-programmed packages.

One area that we still struggle with are his outbursts.  Michael has no filter, no ability to temper himself in cases of extreme emotion, whether happy or angry.  This often results in him hurting those around him, usually a defenseless younger brother.  We discussed what happens in these cases, and our consultant recommended a plan for us to try and physically walk Michael through transitioning him in and out of these moments.  She called it being his “boundary holder” as he is unable to stay within one by himself right now.  It’s going to be like conditioning him to learn to control his body.  I am very excited about this process because if Michael can gain some ground in this area, it will make family life incredibly better for all of us.

The RDI consultant did warn us that this will be a LONG and DIFFICULT process.  (Two words we all love hearing, yes?)  For days, if not weeks, for each outburst, we will have to physically walk him through.  Every.  Single.  Time.  She’s teaching us the words to use, the message to reach him with, techniques to use to avoid physical injury (he’s getting very strong).  Believe it or not, I’m actually looking forward to this a little, not the challenge so much, but I know we have to walk through it to get to the very tantalizing reward at the other end.  And learning techniques that actually work is always morale boosting.  My one concern in all this is the very grounding thought that we have two other children.  Dropping everything dozens of times a day for indefinite periods of times is definitely going to make life more interesting (because it was so boring to begin with).  Our consultant did remind us that working through this is going to benefit them too in the long run, and I have to remember that.  My prayer is that God gives us a lot of grace, wisdom, and patience, and that this process goes miraculously quickly and smoothly.

We were advised not to start until this weekend so there would be two parents on deck for the first few days, so that’s what we’re going to do.  However, just for laughs, Nate tried it last night when Michael fell apart after we returned home, and he was very impressed as to how well Michael responded.  Training Michael to contain himself and not to cross personal, physical boundaries as often is going to be something that benefits us all, and I pray that this is something we can accomplish.

Here’s hoping we have good reports in a week or two!

Despite the Setbacks

I know my posting here has become very inconsistent.  So have been the workings of my brain.  It seems so silly to say this, but all the activity from the past few weeks really threw me for a loop, and I’ve struggled to maintain my sense of order and routine.  I started staying up late to compensate for the stressful daytime hours, and things really went downhill from there.  I’ve been in catch-up mode for most of the household chores and ended up letting a lot of important things go.  While the mental break felt good, it’s time to get things marching along again.

I have missed that close one-on-one dependence on the Lord for getting through the tough days.  I know that there will be seasons in life, and that my relationship with God will change often, but I do hope that I at least keep moving forward.  I’ve been praying that I grow closer to the Lord and also that He would give me more love and compassion for my children.  I’m not as nice to them as I should be when I’m stressed.

Soooooo, in answer to my prayers, we got the stomach bug in our house. 🙂  God always knows what I need.  It was a good time to practice being loving under stress, and by God’s grace and going to sleep early again, I think I managed alright for the most part.  Nothing irks me more than having to clean up poop and puke, and we all know how those come in abundance with the stomach bug.  It was also a good opportunity to practice some RDI communication techniques.  I learned how to communicate much more gently and approach Michael more slowly when he is not feeling well.  Usually in times like these, he will have lots of meltdowns because he’s not feeling well and can’t respond to my long list of questions and instructions, but this time, I changed my approach, and he did SO much better.

The boys seem to be recovering (they’re well enough to chase the cat around the house anyway), and I hope to keep moving forward myself, to keep working more on becoming the person God wants me to be, despite all the setbacks.