On Fighting And Letting Go

I just realized it’s nearly been a year since I last put up a post.  I’d say I don’t have enough energy to blog while I’m pregnant, except our little Caleb is now 6 months old, so I’m not sure that’s a valid excuse anymore.

It’s been an interesting year.  We’re constantly riding out ups and downs.  Very high ups and very low downs.  Everything happens in extremes around here.

I want to share something that I learned earlier this year, just before Caleb was born.  Spring was a very dark time for me.  I was in my final trimester, huge, pregnant, and in a lot of pain.  Psychologically I was a mess as well.  Not only did the end of my pregnancy seem so very far away, but Michael was not in a good place.  He had lost all of his self-control and had zero self-regulation whatsoever.  The result was a child who screamed, kicked, punched, and had meltdown after meltdown ALL DAY, EVERY DAY.  I would be down on the floor with my gigantic belly, wrestling with him to keep him from hurting someone, carrying him kicking and screaming to his bed so he could calm down.

It was hell.  I was so miserable, I just wanted everything to be different.  I wanted a child who wasn’t violent.  I wanted to not be pregnant, to not be in pain every moment of the day.  I wanted to not have to care for three very demanding boys.  It didn’t help that my husband was at the climax of a major project at work and was required to work several weekends in a row.  I felt like we didn’t see him for almost my entire 8th month of pregnancy.  I was really desperate for a change.  I researched and researched and tried to find answers for Michael’s behavior.  I spent hours in front of the computer, hours fighting with him, hours struggling emotionally and mentally.  I began to despair when potential problems were ruled out by his doctor.  I really began to sink into a depression.

At that time, I was so busy trying to fix our home life that I just couldn’t be still and wait on the Lord.  Every time a problem cropped up, I didn’t turn it into a prayer, I turned it into a research project.  I was going to find a problem that I could fix!  I just needed to be able to make things better.  God had been gently reminding me through various means that I needed to put Him first, but I just couldn’t figure out what that looked like when it seemed like my little guys were tearing the house down right on top of us.

In my mothers’ Bible study and support group, a mom spoke about how she had searched for two years for a cure for her daughter’s condition and things didn’t get better until she just told the Lord she was done searching and would leave her daughter in His hands.  At first, I just disregarded her story.  It sounded like the attitude of someone who had given up.  How could a mother stop fighting, stop pushing for the well-being of her child?  I couldn’t see how I was being consumed by the fight for my children’s health, that it was actually an idol in my life.  It was pulling me away from God.

I hit rock bottom a few weeks later.  I had exhausted all my avenues of research.  I had hit a dead end everywhere I looked.  Michael was just as out of control as he ever was, and I had burnt myself out in my search to help him.  I finally threw myself at God.  I told Him I was done.  I was done struggling and fighting because I just couldn’t do it anymore.  I was too tired.  I repented for not turning to Him first in my time of trouble.  I asked Him to show me what putting Him first in my life looked like.  And I asked Him to give me the grace to accept Michael’s health, no matter what it was.

I spent the next few weeks focusing on God instead of on my kids’ issues.  I tried to put Him first in my day and keep Him in the forefront of my mind at all times.  It was hard, it was discipline.  It was new to me, but I prayed and asked God to give me the strength and show me how.

And then it happened.  Michael calmed down.  For no earthly explainable reason.  Weeks before Caleb was born, Michael became a different child.  He found his self-regulation again.  The violence was over.  I didn’t have to wrestle and restrain him or shield my belly from his attacks.  It really blew my mind.  God had used the situation to draw me to Him, and it was only my own blindness that made the trial last as long as it did.

I still get distracted.  Discipline is hard, it’s not very much fun.  But I’ve learned.  I sometimes fall back, but I’m quicker to recover and run back to Jesus now.  I’m learning to walk the fine line of fighting for my children, doing the hard work but still putting the final result in the Lord’s hands.

The holiday season is always a test for me.  There’s a lot more going on that usual, and it is my prayer that I keep my focus where it belongs.  And then let God handle the rest.

Since it’s been a year, I clearly owe everyone some pictures!

Me and my crew.  They’re why I do what I do.

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Nate has just been the most incredible, supportive husband.  He’s wonderful with the kids, and more importantly, he’s never stops patiently loving me, no matter how crazy my drama gets.  The boys just LOVE him.

Our little Caleb joined us in May.  I will admit I was terrified at first that we’d see some of the same issues we had with our other boys, but this little guy has just been terrific.  He has the sweetest disposition, and HE SLEEPS!!  He’s seriously the first baby we had that sleeps.  He’s healthy so far, and super fun.  The older boys love him.  I haven’t seen any jealousy at all, for which I am grateful.  It seems like he’s going to fit in just fine.

I’m still figuring out what life with four kids and homeschooling looks like, so I don’t know how often I will update my blog, but I like to think it’ll be more than once a year.  We’ll see! 🙂

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How We Survived The Holidays

Like many parents of special needs children, I found myself starting to worry about and even dread the holiday season this year.  If last year’s disaster was any indication of how December 2014 was going to be, I knew I was going to be in for an awful ride.  Just to make things more interesting, in addition to Thanksgiving and Christmas, our family has five birthdays (including Michael’s) in the last six weeks of the calendar year.  Because, you know, breaking routine and adding lots of excitement and parties to life is just what every autistic kid needs to remain stable.

Last year was the first time Michael was really aware of his birthday, so we built up the anticipation and went all out.  He got an Iron Man/Avengers themed affair and dictated what kind of cake and presents he wanted.  He was SO excited about it that he was sick for two months afterwards.  Then we went away for three days at Christmas where he was up all night in families’ homes and hotels.  January was hell.  It took him weeks to return to normal.

Then I’m a wild card too.  I love my family’s traditions, and I try to hang on to them as best as I can.  I love Christmas and the special family times and memories.  I really do enjoy it.  But hosting Thanksgiving and three birthday parties, taking the family away for Christmas, and thinking about purchasing presents for nineteen immediate family members (let’s not forget those birthdays too!) can really make my ADD go into overdrive.  I find myself running around without a plan and not in a good frame of mind to provide Michael with the stable environment and routine that he needs.

I was determined that this year was going to be different.  I learned a few lessons from last year and was ready to make some changes while keeping as much as I could about what I loved from the holidays.  Here are the changes we implemented.

  • We did not talk about Michael’s birthday at all unless he brought it up.  I did not mention a party or presents or anything.  He knew the day was coming up because he has a calendar on his wall with special events written on it.  (He’s been doggedly crossing off all 280 days on it so he knows when the new baby is coming.)  He requested some presents but I made no promises and downplayed everything.
  • The day of his birthday we did not throw a party.  Members of the family came and visited in groups of twos and threes, staggered throughout the day, and did not stay more than 20 or 30 minutes, which is Michael’s limit.  We had the whole day planned out, kept him busy, transitioned him from activity to activity, but kept things calm and low key as well.  There was no huge excitement, cake event, or momentous occasions.  He turned down offers of singing happy birthday and hugs and was very happy with all his new birthday presents.  He never got overly stimulated and the whole day was a happy and stress free affair for him.  Again, we did not talk about birthdays or parties afterward.

The birthday boy gets some cake.

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Icing cupcakes he made himself to give to his guests.

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Receiving a toy NASA shuttle that once belonged to his mommy and uncle.

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Getting help from Daddy to assemble a Lego shuttle and launch pad (see a pattern?).

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Getting a Toothless action figure at bed time (the one gift he had been begging for).

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  • Michael had very limited access to the other birthday parties we hosted at our home.  With six adults and nine children celebrating, the place gets pretty full and noisy, and Michael finds it hard getting alone time in his usual escape places.  Instead, he got to go out and have one on one time with a grandparent from the other side of the family for several hours while the party was going on at our place, and he would join us just for the last 30 minutes or so.  He wasn’t deprived of celebrating with the birthday person, but he wasn’t forced to deal with more than he could handle either.  He would usually come back in time to give his birthday present, eat some cake, and see the family for a few minutes.  It really worked out for him, and he wasn’t totally wired when everyone left either.  This was a really big win for us, something we are definitely going to repeat.
  • I kept up my routine for as long as I could.  Michael had lots of new toys, particularly Legos from his birthday, that kept him busy.  We did our morning homeschooling and afternoon movies.  I didn’t talk about upcoming events until the day of and tried to keep things normal and boring as much as possible.  He totally thrived.  I lost it the week before Christmas as I went nuts with last minute preparations, mostly leaving the children to their own devices, and I noticed his behavior declined in that time, but all in all, I gave him as much stability as I could, and he really rose to the occasion and kept it together.
  • We ended up not traveling this year.  The decision was mostly made by Nate’s job that required him to be local, and I was really bummed about missing out on my annual visit with extended family, but I could not deny that it was really the best move for the kids.  They just don’t sleep away from home and their behavior quickly spirals out of control as their sleep deprivation increases.  We spent a few hours visiting with family on Christmas day and quickly took the kids home as soon as they crashed around nap time.  They’ve been home in their beds every night and getting afternoon naps and it’s really kept things even keeled.

My only major slip up this year was I left a broken bottle of red food dye on the back of my counter on THE DAY OF CHRISTMAS EVE NO LESS and Michael got into it while I was out doing errands and he was home with a sitter.  The stuff leaked into his skin and he got a bad reaction, the same as if he ate some, and got out of control with his sensory seeking behavior (we got NO sleep that night).  Usually stuff like that lasts 48 to 72 hours, but with the use of some of our alternative medicine treatments, the reaction was substantially minimized and only lasted about a day.  I really considered myself lucky there.  He did very well Christmas Day while we were out visiting (again, new Lego set kept him quiet, happy, and busy).

Now I’m trying to catch my breath from the whole month of December (and catch up with the laundry, the dishes, the routine, etc.), but Michael has coasted through beautifully.  I’m so pleased.  It’s like the opposite of last year.  It was very hard work for me and Nate, trying to anticipate and plan for every little event that might upset his equilibrium but it was totally worth it.  We definitely learned what worked for us in terms of keeping things calm and easy for the kids to handle.  And we were still able to enjoy Thanksgiving and Christmas and spend time with family as well, which was very important to me and my years of tradition.

I’m so grateful for how things went, and hopeful about having enjoyable, peaceful holiday seasons in the future.  Here’s hoping you all had wonderful Christmases yourselves, and may you enjoy a fantastic New Year!

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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

Hustling Project

Good morning!  Just wanted to let you all know we’re doing fine over here.  It’s been quite busy the last few days, but good stuff for the most part.

I’ve stopped writing in the mornings temporarily because I’ve taken up a new project.  Michael’s had trouble sleeping at night.  The heavy quilt he sleeps under is too hot for the summer time.  He takes off the quilt because he’s hot, but then he can’t sleep because there’s no pressure on his body either.  So we’ve determined that he needs a non-hot weighted blanket, which I am now making him.  A few months ago, I had purchased material to make him a quilt, but now instead of putting quilt batting between the layers, I’m filling it with poly beads.  It will make the blanket heavy, but not really all that hot.  I’m excited, I hope it works, and he’s excited because it has Lightning McQueens all over it. 🙂

Here’s a peak.

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Anyway, I’m spending about an hour every morning on it before the kids wake up.  I’m trying to knock it off as fast as I can, I’m hoping it’ll help him sleep better.  He’s still not falling asleep till after 10PM at nights.  I’m keeping my fingers crossed that this blanket will help.

I”ll keep you posted!  Have a fabulous week!

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! 🙂

I Hope This Doesn’t Make Me a Bad Mom

Disclaimer: I’m having a pretty rough couple of days emotionally.  So much so that I’ve had to invoke the 24 hour rule (I get one day where I don’t have to do anything but feed the children so I can cry, complain to God, and just sit there and sort through all my messy feelings).

There’s been a lot going on the last two days that I’ve had to feel and think about.  My emotional pile was teetering pretty precariously, and then it finally fell over this morning with one of those blog posts.  The one that my timeline is just cluttered with.  Another parent of a special needs child that can see past the needs to all the potential that their child has.  A parent who says their child is better off because of the way they are.

I just can’t do it.

I don’t have that in me.  I always look at those posts and wonder if the people who write them really mean it, or if it’s just something they say to encourage themselves, to keep them going.  Or maybe they really do mean it, and I haven’t gotten there yet, but either way they usually leave me feeling worse, not  better.  Don’t get me wrong, that kind of thing is good, it helps people know and understand, particularly if they don’t have a special needs person in their life.  I just haven’t been able to find it encouraging myself.

I think I know what the problem is.  I haven’t found my silver lining.  I totally and completely believe that my life and my children’s lives were lovingly crafted and ordained by God and are full of purpose and destiny, but today is the day when I’m feeling all the dark things.  That when I look at my children I don’t see kids enjoying life but disabilities that need managing.  I see the therapies and the schedules and the changes in communication and all the hard work.  I see children I invest enormous amounts of physical and emotional energy into who are unable to reciprocate.  I see a lot the dreams and expectations I had when I was all excited about parenting now heaped into the pile of things I have to let go of and mourn.

Maybe it’s my Asperger’s, the fact that when I feel one way about something it becomes the rule, the way I always feel about something, but that’s how I feel about my kids all the time.  I see them this way every day.  Most days I’m more optimistic about our prospects, and days like today when it all comes crashing down on me are few and far apart, but it’s still how I see my children on a daily basis, and it makes me sad.  I don’t know if it makes me a bad mom.  I hope not, maybe it just means I’m human, but I’m going to admit something here that I’m afraid to say out loud.  I don’t really enjoy my kids most of the time.  I love them, I truly do, and I treasure the rare moments when there’s a snuggle that doesn’t involve physical pain from being too close to a restless, SPD body and the few times I’ve written about recently when we seem to have a normal experiences, but even those are bittersweet.  And then my mourning process starts all over again.  The tremendous amount of effort it’s going to take to help my children achieve their potential scares me.  Again, I know it’s a good thing because it brings me closer to God, but let’s be honest, it’s still pretty scary and overwhelming.

I know this is a messy, dark, rambling post that doesn’t sound like my usual self.  I’m not even going to edit it all that much.  I will be back to myself tomorrow.  The 24 hour rule ends tonight.  But this is the underbelly of being a special needs mom, and sometimes it’s really ugly.  I’ve been crying the entire time as I write this because it really hurts today.

I believe that God has plans that promise me a future and a hope, but I also believe in being real with people, and today this is my reality.

 

P.S. I have to thank Nate who is an amazing person.  He has stepped up to the plate and taken charge of the kids and everything since all I can do this morning is sit and cry.  I appreciate you, Honey, and I promise I’ll be back soon.

 

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.