Doing Life With Nate

Eight years ago today, Nate and I got married. ¬†Boy, that was a fun day! ūüôā

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Elissa took our wedding photos.

It certainly hasn’t been boring since. ¬†We’ve already had plenty of ups and downs, trials and triumphs, and failures and successes to last us quite some time. ¬†If marriage was easy, God wouldn’t ask us to start it with a promise to stick it out, but I’m glad He is always with us, teaching us, supporting us, and reminding us that the work is worth it. ¬†I wouldn’t want to do life with anyone else but Nate.

And we even get to run out for an hour alone together this evening, courtesy of my parents, so that will be a nice treat!  Looking forward to it.

Happy Tuesday!

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I Asked God To Break My Heart With Something That Broke His, And He Did

Yesterday, I spontaneously decided to go to our region’s annual Autism Awareness walk.  I’ve really been thinking and praying a lot lately, and I know that I am dealing with all these special needs for a reason.  I am looking to see how God wants me to use my experiences to help others.  I wanted to see what this community looked like, to see what the needs were, and I was just overwhelmed.

The need is so great and on so many levels.  As I walked around, I could see families everywhere, supporting their handicapped loved ones, out early on a freezing cold Sunday morning because they want to see them get better, to do something to stop a growing epidemic that no one truly understands.  There is great love and great hope, and I commend these families for doing the best they can with the information they have to make life better for those who are on the spectrum.

And yet I was incredibly frustrated.  Here is where we wade into the emotional and controversial and so for now I will keep things vague, but I was saddened to see people who, I felt, were misguided.  There are so many programs out there, and desperate parents are running from thing to thing, searching for an answer, and yet there are many therapies that I feel don’t help, or worse yet, propagate problems.  The place was filled with junk food, vendors handing out candy to children while politicians made promises they couldn’t possibly keep to people who are ready to grab at anything that appears as help.  Two things that can cause terrible damage.  The lack of education was saddening.

The need is so great, so overwhelming, and I could feel my heart breaking over it.  This isn’t the ministry I would have chosen, and yet I feel as though I have been chosen for it.  It’s the work of a lifetime, and it begins with my own family, and yet I know it is never, ever meant to stay confined there.

I am watching, learning, thinking, planning, and praying, always praying.  There is work to be done here, and it will need the hand of God.

God’s Got This

Yesterday was great and a complete washout.  We managed to make it through, Gabriel had all of his therapy sessions and his transitional meeting was a great success.  The kids completely destroyed the house while I was on the phone, but they did it kind of quietly, so at least I was able to finish the meeting before finding them in my room, stripping the bed, jumping on the mattress, and turning over whatever boxes they could find and dumping out the contents.  Let me say, I cannot WAIT until the weather is consistently warmer because I am ready to just toss these little monkeys outside and bring them their meals out there.  They are like a force of nature.

I had been really hoping to cut back on the amount of therapy that my kids receive because it just sort of rules my life and my schedule right now. ¬†Gabriel ended up going from two therapy sessions a week to six, but I know he needs it, so it’s time for me to just suck it up and figure out how to fit it all together. ¬†I can only put it all in God’s hands that there are not going to be that many collisions between Michael’s schedule and Gabriel’s come September. ¬†Gabriel will be receiving special instruction again to help with some of his cognitive delays in addition to an accelerated speech and occupational therapy schedule. ¬†He’s slowly catching up, and I’m hoping after one or two more years of really intense work, he’ll be moving at a pace where we can just drop it altogether.

Thank God for our wonderful homeschooling family who lives around the corner. ¬†They have a fantastic teenage daughter there who likes to come help out with the kids for free (because that’s about what I can afford for help right now). ¬†She came last night to get me through the homestretch of the day. ¬†I was just done. ¬†I had been in therapy sessions and on the phone the entire day. ¬†The kids had taken advantage of that and torn everything apart (William busted through some of the child proof locks and emptied all my kitchen cabinets on the floor while Michael led Gabriel on a merry chase of dumping out every box of toys they could find in the house), and then William cried all afternoon because a tooth was coming in, and he wanted to be held. ¬†Nate came home with a bad two day headache and went straight to bed, so this wonderful girl came and helped us through dinner, baths, and bed.

I am so grateful for how God provides, He knew I just could not make it without an extra pair of hands last night. ¬†He ensured Gabriel would receive all the services he would need. ¬†He’s provided a friend to come today to help me with some management questions. ¬†While I sometimes feel like this is all a bit crazy, He’s caring for and providing for us every step of the way. ¬†When I see that, I can feel some peace and security, knowing He’s got this even if I don’t.

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?? ūüôā

Happy Thursday!!

A Blessed Special Easter

Holidays are a little tricky for Michael. ¬†You can never tell how they’re going to go down. ¬†There’s too much change in the routine, too much excitement, and sometimes he can navigate it OK, but at some point there’s usually a repercussion. ¬†After all of his major upheavals on Friday, we let him be on Saturday. ¬†Nate and I focused on the exciting task of moving William out of our room and into his own bedroom next door to Michael and Gabriel. ¬†He’s spent two nights in there like a champ now, which is very exciting! ¬†There’s still a little crying at bedtime, but he was doing that in our room as well. ¬†Michael handled Saturday fine, and then of course we changed our routine on Sunday morning for Easter, and that made him a little tenuous for the rest of the day.

He didn’t want to go to Sunday School, which is typical, but when we tried to register him anyway, he fell on the floor crying, so we just brought him back to the service with us, which was louder and more crowded than usual. ¬†He did well and sat for about 20 minutes, but then needed to go for a walk. ¬†While we were walking in the lobby (Michael just LOVES the new fountain they put in), we were introduced to another mom who was giving her own daughter a break from the service as well. ¬†She was new to our church and was there with her beautiful daughter who also had some special needs. ¬†We spent a lot of time talking and it was just wonderful to connect. ¬†It was totally a divine appointment, and I’m so glad it happened. ¬†I always remember our journey is worth it when I am able to take all the things I’ve learned with our boys and use it to bless someone else.

Afterwards, we had lunch with Grandma and Grandpa followed by an Easter egg hunt with Grannieannie and Grandbob.  It was a lot in one day for the little guy, and he did have one meltdown at one point, but we all muscled through, and I think all in all he did have a nice time.  Bedtime was a little rough, there was a lot of restlessness and calls for hugs, but he was eventually able to settle down, and today we will try to keep it a nice quiet day so we can all transition back to normal.

He REALLY enjoyed the egg hunt. ¬†And who wouldn’t when Grannieannie and Grandbob fill the eggs with delicious, spectrum-friendly treats???

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Gabriel enjoyed checking out his loot as well and ate his weight in grapes, strawberries, and trail mix before leaving the site of the hunt. ¬†He loves the idea of opening his eggs and reaching in the little bags for treats, but his fingers still can’t quite manage it, so I helped him, though not quite at the speed he was expecting at times. ūüôā

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William was too little to appreciate his egg hunt last year, but this year he was quite tickled that the colorful eggs rattled when he shook them.  He was completely thrilled at eating pretzels for the first time, and that kept him bouncing for quite awhile!

 

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Michael was able to rally one more time after supper at the end of the day and managed to go outside and try playing with his cousins. ¬†A lot of times when he is overwhelmed, I see him withdraw from the crowd and just go off and be by himself, so it’s extra special to see him try to participate in something with everyone else.

 

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I took all these photos from my husband’s Facebook page, he’s a great photographer, thank you Honey! ūüôā ūüôā ūüôā

I hope you all had a blessed Easter. ¬†It’s always good to remember that it’s the day that makes all the other days worth it. ¬†I am incredibly blessed and loved by my Lord and the amazing family He has given me.

Happy Monday to you all!

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!!

Praying for Vision

I don’t know if it’s the fluctuating weather, the time of year, or the boys’ cabin fever, but we’re sort of aimless right now. ¬†I’m trying to plan out days a little, and we’re certainly getting through life, however, it feels as though we’re kind of drifting rudderless. ¬†I have been thinking about a lot of things lately regarding our family’s future, and I know it’s time to identify and specify our vision.

“Where there is no vision, the people perish” Proverbs 29:18

I don’t want our family to spend years and years just doing life and have nothing to show for it. ¬†It has always been our prayer that God uses our family to bring glory to Him, but that’s not enough. ¬†Now I need something a little more specific to aim for. ¬†These are the formative years for our boys, and this is the time when we can choose which direction we want to go.

It’s time to start praying for a clearer vision. ¬†I’m pretty excited to see what adventures He has in store!!