Extreme Parenting

I read the term "extreme parenting" recently and realized that feels like the perfect way to describe my role right now--parenting in and of itself is rough and taxes even the toughest of men and women, tests us in ways we never thought possible, and rewards us so deeply we cannot explain it.  Parenting Matt feels like parenting on steroids. 

Because of this, I think it is fair to say that I don't always share the details of what is going with everyone.  I tend to give a rather surface answer to typical questions about how I'm doing because I don't know how to explain the struggle.  It has recently gotten to a whole new level and we are facing decisions that no parent should have to face, and so I can't really just share stuff with anyone.  This is the heart stuff....this is the stuff that makes you feel like you might break into a thousand pieces. 

This is going to be a post that I worry will be too vulnerable and hesitated to put here, but realized that part of what helps me to see the lessons in the hard experiences is to know that they might help someone else.  So that's the hope.

The past several months have been a roller-coaster of emotion and we've been trying to figure out how we are going to function in our current reality with Matt.  His behaviors have been so intense, his regression so profound, and our ability to cope seems to be fading.  We ruled out some of the potential physical causes (he does not have a brain tumor), but were literally struggling to keep our heads above water every minute of every day. 

Now, every family has their hard phases, so I know that you will relate to this...but because I study and breath and love and can teach communication, it was very hard for me to watch myself react badly to all of this and struggle to talk about it.  My sister kept reaching out to me, but I couldn't reach back. My parents are on a mission and I just couldn't find the energy to go into all the details (or would cry if I tried). I stopped going to social things (COVID and a busy family makes the excuses pretty easy).  I found that every ounce of patience I possess was sucked up by Matt, leaving none for my other children or Todd.  My ability to engage with the other members of my family was so diminished and then I would finally have a moment where my mind could wrap around their "stuff" and I would panic when I realized they had some pretty big needs that I was not able to meet because I was so depleted. And then I would feel even more exhausted.

After several months of this, doctors started to see the toll it was taking on me and on our family.  They could see things I couldn't, including the fact that my other kids were suffering. They started to recommend that we consider some out-of-home respite or even a residential facility for Matt, both in the short term and in the long term. Mind you, Todd was saying the same things, but I couldn't hear him. I couldn't take it from him. My perspective has always been that having Matt in our family will make all of us better humans.  I still believe that--I see that.  It is true.  However, there comes a point where you lose the ability to find a healthy balance and my other two kiddos were suffering...their needs were not being met.   

This was a devastating blow to me. I felt like a failure as a mother and I clung to Matt even tighter.  I tried to do everything that I could to protect the rest of our family from him so that no one would make me put him in a home.  I couldn't imagine someone else putting my baby to bed, seeing his gigantic smile when he woke up...I couldn't fathom giving him up, which is what it felt like.  So I put myself between him and everyone else and tried to put on a happy face so this wouldn't be real.  I found that it wasn't possible--I couldn't do it. 

In the middle of this phase, we had an experience that put Todd and I profoundly at odds--it was the straw that broke the camels back for him (he had so many other things that were causing him stress), but it had to do with my family and therefore I ended up on "the other side" in all of it.  He had a difficult time talking to me and when he crawled into his hole, I crawled deeper into mine. I tried to protect him more from Matt because he was snappier with him.  When I would get frustrated at how quickly he would get frustrated, it made the chasm between us deeper.  When I would try to put on a happy face and power through with positivity, it depleted me even further.   What I realized is that when we are experiencing loneliness and emotional isolation, we give ourselves permission to act in a way that we wouldn't normally permit ourselves to act and to think thoughts that we wouldn't typically entertain.  I found myself writing stories where I was the victim in our relationship and in our family.  I started to allow my mind to think through scenarios where we didn't have Matt or compare ourselves to other families who appeared to have it so much easier.  When you have a child with special needs, that comparison is one of the most dangerous because it further isolates you in other relationships. You start to believe that no one can understand your life in addition to resenting your own circumstances...and everyone else who appears to have it "so easy."  I started to even do that with Todd--I started to compare my life and responsibilities to his, feeling like I bore the brunt of the emotional burden as it relates to Matt, so I started to resent him and take mental notes of all of the times I took the lion's share. 

Now, you have to know I possess a super-power.  I know this isn't something that everyone can do, so please know that as I say this, I know it is a gift (I consider it a spiritual gift).  I was able to step out of all of this in a way and see what I was doing.  I decided I needed to work on thinking different thoughts about Todd to start with and I literally stopped allowing myself to give ANY attention or breathe any life into a thought with even an ounce of negativity.  I willed myself to see the best in that man and decided to crawl into the hole he was hiding in and try to see things from his perspective.  And then he started to climb out...and I was able to express to him that I felt like I was falling off a cliff and that he was standing there, watching, and was going to witness me going "ker-splat" rather than reaching out to catch me.  I told him I needed him to catch me.  At that point, everything with us started to shift. 

You do not have to think the same thoughts as someone or be totally on the same page in order to have unity in your relationship.  As Todd and I started to talk more about everything going on with Matt, I no longer resented the fact that he had been making the same suggestions as the doctors for months now.  He was able to explain to me why he thought it might be best for Matt and our other kids without me immediately labeling him as "giving up" on Matt.  We were able to have conversations about our future where I didn't bawl my eyes out the entire time. They have led us to a better place together.

As things started to shift, two of Matt's doctors had an idea and tested him for some infections.  There is something called PANS where you can have an infection in the body that causes psychiatric symptoms.  Matt did not have the expected strep infection (which was almost a disappointing because you can treat infection), but he DID have a staff infection in his wee little bum. We immediately started him on antibiotics and his behavior was profoundly better within 24 hours. After he finished the round of meds, he tanked--immediately stopped sleeping and went back to all of his intense, horrible, aggressive, HARD stuff.  So we started him on antibiotics again....and this time, as he finished the round, things stayed pretty steady...and they have continued to be ok.  Not awesome...but OK.  

We no longer feel like we are barely able to keep our heads above water.  Rather, I feel like we are starting to think rationally about the future.  This experience taught me that it can, and likely will, get desperate at times.  And it opened my eyes to stories where other people have put their children in a home...or not.  I've actually learned a little bit about the negative psychological impact it can have on a child when you keep them in your home rather than allowing them the social interaction and activity/therapy a group home would provide. We have not made any decisions yet, but we are starting to talk, research, learn, and think about what is next.  In the immediate future, we are still looking for more help with Matt on the weekends, but instead of feeling like we are going to murder each other every weekend, we are tag-teaming better as a family.  

If you are a parent who feels buried alive by your role, please know you are not alone.  Please allow yourself to see your victories.  If you need to crawl into a hole for a few minutes, invite a few friends to visit you there--let people in.  The hypocrisy of this advice is not lost on me, BTW.  Todd would read this and laugh that I'm saying it.  But I am TRYING.  I am making effort.  Writing this out and posting it is my attempt to invite a few friends into the hole I am working to vacate.  

Our experience yesterday (see yesterday's post) yielded some tender fruits.  We all have loved on Matt a little harder and felt some really big feelings as a result.  It served as a beautiful reminder of how much we love our crazy, chaotic, messy family...and wouldn't trade all of this hard stuff for the world. 

Deep Breath

Today Matt almost died.  It doesn't feel like it was that dramatic and perhaps I have spent the last several hours downplaying it in my mind so that I don't freak out over what could have happened, but that is the actual truth. 

I had some leftover pizza out on the counter and was getting ready to heat it up.  Matt ninja-grabbed a piece and shoved it into his mouth.  Immediately, I knew he had overstuffed so I was watching him--I even invited him to spit it out a few times.  But as he continued to chew, I thought he was making progress. He was walking around the room as he continued to work on his gigantic mouthful.  At one point, he sat down and then abruptly stood. Adi yelled, "MOM! He's choking!" and I looked over to see him gagging a little and when he went to breathe back in, he couldn't get any air.  I immediately started to do the Heimlich, and he gagged and threw up a tiny bit, but then immediately went back to being completely blocked. I realized very quickly that I was making zero progress--nothing else was coming up, no air was coming out or going into him, and he was literally motionless from the inside (not sure if that makes sense, but when you wrap your arms around a person that isn't breathing, it feels different).  I yelled for Todd and he must have heard the panic in my voice because he came running SO fast and I told him, "I can't get it!" so he took over and told me to call 911.  I did so immediately.  The connection was really bad, but I was able to tell them that Matt was choking, not getting any air, and starting to lose consciousness.  Matt would periodically make a gurgle which I knew was a good sign, but then his eyes started rolling back and closing, he knees would buckle and he would start dropping to the ground.  Todd held him up and continued to lift his body over and over with as much force as he could to clear his airway.  He was pounding on his back periodically...and nothing seemed to be working.  The paramedics were dispatched and the 911 operator continued to talk to me, asking me for updates on Matt's breathing, any sounds, talking, consciousness, etc. 

Finally, after what felt like a slow-motion hour (but was actually in total about 2 1/2 minutes, Matt took a few small, raspy breaths).  We think he finally swallowed the crust because nothing came up.  He immediately tried to walk away from Todd (I think he was a little traumatized) and went into his bed, curling up in a ball.  Todd got out a stethoscope and listened to his lungs which seemed clear at this point.  

The paramedics arrived a few minutes later and we were happy to report that Matt was doing MUCH better--by the time they left, he was his usual self.  He was trying to drag them over to watch a video on his iPad or walking them to the door before they were ready to leave...the usual Matt tactics. 

Adi was traumatized--she was SOBBING in a corner where she sat and prayed the entire time this was going on.  She watched him choke at the beginning and when she started screaming, I think I yelled at her to calm down because it was making things so much worse...which didn't help her feel calmer at all (duh).  She ended up making her way upstairs at some point so she didn't have to watch it.  Todd was talking to a physician buddy later in the afternoon and he said that is probably one of the most traumatizing things for an observer to see--it is terrifying.  I can attest that is true...watching Matt's face, I will never forget.  It went from panicked to literally fading.  Not expression. Almost sleepy.  And my mind was racing through everything that I would regret if something were to happen to Matt--not getting that stupid pizza crust out of his mouth being #1. But as I looked at him and thought, "is this it?  Is he going to die?" I somehow knew it wasn't.  Maybe it was denial, but I was right.  He is 100% totally fine and not even a little bit freaked out by what happened.  Only the rest of us are. 

This experience has me thinking about a couple of things.  First, I wasn't strong enough to help Matt.  If Todd had not been home, I am not sure what would have happened.  I think I need some more first aide training to feel confident--I need to know how to do these things more effectively. Second, I am grateful it happened.  Todd had me call 911 immediately.  Even if he had not been able to get him breathing before they came, they would have come soon enough to still help.  Had we waited to call and things had gone differently, it could have been the difference between him living and dying.  Always call right away. 

Lastly, I got a front row seat to how much my children love their brother.  It was tender. I know we all love him, but moments like that remind you how fragile life is, especially during a phase fraught with frustration and trial.  

Needless to say, we are tired and excited to sleep off the drama.  

Special Needs Mom

There is something I have learned about being a special needs Mom.  It's a hard lesson to describe, but I'm going to attempt because I think there is something really profound in it...and liberating. 

One of the struggles that I have had in this role is feeling like I can never do enough.  There is an expectation that I will have all the answers...and if I don't, that I will research the crap out of something until I do. There is an expectation that I will advocate for my child--that I will, with righteous indignation, stand up for areas where he is systemically disadvantaged because of his disability.  This requires me to watch everyone and every organization that he interacts with like a hawk to ensure that he is not discriminated against, given less than someone else, or in some way not treated fairly.  There is an expectation that I will fight for more. There is an expectation that I will never stop trying stuff--never leave a stone unturned.  The fads and fashions when it comes to treatments for autism and other disabilities (natural and medicinal; western and eastern medicine; supplements, diets, brain mapping, cranial manipulation, etc. etc) need to be understood and explored if I am to be a good special needs Mom. 

So I have done a lot of that...and when I have run out of energy from wiping his cute little butt and protecting my arms, neck and hair from his dagger-tipped tentacles, sometimes I just feel bad about what I no longer have the strength to do because it is expected. I talk to other Mom's who seem to have an endless supply of energy and passion for their kids which makes them capable of meeting those expectations, which certainly is admirable, but is also exhausting.  Comparison is the devil, so obviously that isn't a constructive train of thought; however, it is natural. 

Here's the thing I realized today as I was putting Matt to bed.  He asked me to go to bed which means he was motivated to get there, which means he was cooperative and adorable.  He dove into bed and I crawled into his tent with him.  He chose a book which we read together and then he chucked aside, rolled over, and snuggled his large body up against me, holding my hands between us.  That's his position for us to say prayers.  When I started praying with him and specifically for him, I realized that I spend very little time praying about the things that I spend the most mental and physical energy on as it relates to my role as his mother.  I have been stressed out of my mind about his regression and researching, trying new seizure meds, talking to specialists, talking to friends, talking to myself...but i have spent very little time talking to God in a very real way about all of this.  I have not asked Him for help to make it happen.  I have almost been so caught up that I neglected the most powerful use of my energy--to ask the Source of a miracle to be involved in this process.  I have asked for guidance, but I had yet to ask for a miracle. 

I talked to my kids tonight and told them how worried I have been and how I forgot to ask God to help with the very specific things i'm concerned about--help Matt to articulate words again and to communicate in a way that helps us better understand and meet his needs.  I asked Him to help Matt remember how to go potty in the toilet and for this incontinence to go away. And....I prayed that I will have the energy needed to help facilitate that miracle--to do all the work that is now required in conjunction with my faith to help my boy make the progress I am so desperate for.  

Shame on us as parents, specifically as special needs Moms, for thinking we have to be super-heroes.  We can still act like them, but there is a higher Hero that we need to involve and stop thinking we need to carry it all on our own. 

Mother’s Day Miracle

 have been so spoiled today-amazing breakfast, gifts, incredible dinner, and very little “mom-ing” throughout the day.  

The one part of the day I was dreading was church because, for the first time in a year and a half, we were going to take Matt to church.  One of our amazing respite providers usually comes and takes him so we can go since Matt won’t wear a mask.  But today, she had plans, so we didn’t have another option.  

As I was driving for a moment by myself, I said a prayer and asked Heavenly Father if it was even OK to ask that he help us to have a good experience at church...that Matt would, somehow, by some miracle, sit still. I asked if it was OK to ask because it seemed a little far-fetched and unrealistic, given that the fulfillment of that "wish" would constitute something beyond my comprehension. Lately, the only times he is still and not frustrated are when he is doing a preferred activity like sitting in front of Alexa, playing Starfall, or interacting 1x1 reading a book, etc.  None of those things are very feasible at church, so I couldn’t see how this would possibly go well.  And I sometimes feel like, when I ask for something that specific, I am often disappointed because my prayer, though answered, may not look like I had hoped, so there is a bit of a spiritual battle that I go through to make sense of how it may have been answered in a less-obvious way.  Anyway, asking directly for something is a vulnerable exercise for me. 

But I did.  We got Matt ready for church and discovered that he literally had NO pants that fit him.  Like none.  Even the pants that he had worn when my parents were set apart a few weeks ago didn’t work.  Granted, I’m not sure we actually were able to button them then...but this time, there was no chance of buttoning them.  So I rubber-banded them like I did when I was prego.  He wore a suit jacket, so we covered up my failing. 

Right before we left the house, Matt went on one of his screaming tirades and my heart sank.  I almost decided not to go.  But we did and we walked into church, backpack loaded with snacks that don’t make a mess, puzzles, books, and his PODD book.  I think we were all nervous. 

During the opening song, Matt would yell “GOOD SONG!” In between each verse and at the conclusion.  He let out one tiny scream, but that was all.  He burped a couple of times, but not a thousand times in rapid succession,  And he did a GIANT no-holdiing-back yawn during the sacrament.  Other than that, he was SILENT.  Quiet as could be, not fidgeting at all.  He cuddled with Liam and held his hand.  He leaned on Todd and did puzzles quietly.  He ate his snacks and read his books.  Matt was incredible. 

My eyes may have filled up and even over-flowed a few times as I realize that my prayer had been answered in a very direct way--that Godis mindful of me and this situation we are in. It is so up and down--we’ve had a lot of uncertainty lately and so many changes that we are in the middle of in terms of Matt’s meds and, well, puberty.  It feels like we are in a hormonal washing machine getting all churned up and almost drowning some days.  But today was not one of those days.  Today was my miraculous Mother’s Day.   

Regression

 My heart hurts as I finally sit down to write this long-overdue post.  I think I literally stopped writing because I couldn't put my heart on paper adequately.  Rather than trying to say the right words though, I am choosing to prioritize just sharing the story because I recognize the value in the process and the learning that takes place throughout it.  I'm so tired of it though...and so tired in general as I try to wrap my head and heart around everything.  I never stop thinking about it.

About a year ago, we started noticing some dramatic behavior changes in Matt--he started to become increasingly agitated, easily frustrated, less inclined toward preferred activities, harder to satiate, impossible to please, and generally unhappy.  The mood in our house started to decline because when Matt isn't happy, ain't nobody happy since he makes it his mission to express his displeasure in the loudest ways possible. 

Literally the day before schools closed and everything started shutting down (pandemic), I took Matt to see his psychiatrist to talk about a med change.  I took all three kids and the doctor asked Adi to describe what our house I like.  I was in tears as I started to recognize that, though I take the brunt of Matt's aggression and displeasure, it was profoundly impacting my other two kids and I couldn't even see it because I was so blinded by the behaviors in front of my face. My own lens was blocking my view.  

We started trying to mess with meds and had a front row seat as thing after thing worked or didn't work.  Matt stopped sleeping at one point....so we had to put him on a mood stabilizer that had a sedative in it.  We went night after night with literally minutes of sleep (we would sleep in shifts) and then watched as Matt would claw his way through the day, so exhausted that he was hyper and literally unable to make himself sleep.  When we got that under control, the next thing started...and thus we cycled through challenges and behaviors. 

At one point, the behavior of choice was screaming.  I'm not talking roller-coaster scream of excitement.  I'm talking ear-splitting, horror movie, I'm being stabbed with a thousand knives screams that last long and are so loud you can literally feel it in your insides.  Our ears hurt.  Todd started to feel like he was losing his hearing and saw a specialist who made him ear plugs to block out the high-pitched sounds.  The other two kids would just plug their ears or scream back at him.  I wanted to hit him or hurt him to make him stop, and that is a VERY scary place to be as a parent--to wonder when you are going to actually lose control...not IF you will.  I would crumple into a puddle of tears when it was at its worst and hide....trying to shut it out.  We even started to look into the possibility of surgery on his vocal cords because we couldn't figure out how this could possibly be anything but totally damaging to him as well. 

The thing that stunk the most is that I realized in the middle of all of this that I was so worried about myself and how it was impacting me and the other two kids (as well as Todd, though he's a big boy and told me in no uncertain terms how he felt about it), that I forgot to feel sorry for Matt.  I forgot to think about how painful it must be to have something to say and not be able to do anything but scream to express...and then to have someone try to shut that off.  It started to feel like a tick--what a horrible tick to have!  

Over the course of several months, it finally started to, almost imperceptibly, decrease.  We started to realize he wasn't doing it as much or as often and that our attempts to ignore the behavior were actually paying off a little.  Then came a new set of struggles. 

Matt started peeing his pants several months ago.  He would just randomly, after going potty, pee again.  I started to wonder if it was a loss of bladder control or something else...it felt like something else.  Then he started pooping his pants during the day (highly unusual for him--used to only poop in the morning) and I realized that it might be an inability to differentiate between the muscles used for each--that he may have felt the urge to poop and when he pushed, pushed out pee as well. After changing his pants a million times a day, I finally put him in pull ups during the days where he was peeing more often and then, gradually, he ended up in pull ups the entire time.  He has now regressed in his control to the point that he sits on a chair and tries to push out pee.  We can't go 30 minutes without finding pee in his pull up.  He seems to have completely lost control and constantly pushes out pee.  

Add to that the fact that his speech and ability to articulate have declined as well.  I saw a video the other day from 2018 and realized just how well he was enunciating his words.  I bawled because I hadn't realized just how profound the regression in speech has been until that moment.  He is drooling more, slurring more and more, and just struggling to pronounce things in a coherent way like he used to.  

Todd and I have started to have those marriage-rocking heart-wrenching, soul-shredding conversations that no parent ever wants to have about whether or not we can sustain what we have long term.  Matt has become so strong that we can't physically manage him when he doesn't want to be managed.  If he refuses to do something, there is nothing I can do with all my muscle and force to change his course or trajectory. He scratches, hits, and has knocked me over on a number of occasions.  He has injured me more than once in a way that scares me...not because he intends to, but precisely because he doesn't.  And I can't keep up. Todd watches this and worries, but can't do a thing about it while he is at work and I think that worries him.  

I write this not so that anyone would feel sorry for me if they ever read it, but to point out a few dramatic lessons that we have learned through this process. 

1.  Puberty sucks.  A lot of this could be explained by puberty. Not for the faint of heart.  Wish we could skip it. 

2.  My role is Mom.  I keep trying to figure all of this out on my own. I can't.  Why do I keep thinking I need to?  Neurology has instructed us to do an MRI to rule out a brain tumor.  I have found (finally) a developmental pediatrician who will hopefully jump in the game as QB. I have relied heavily on therapists, school specialists, his teacher, and our angel respite provider who has made a heart-connection with Matt that I can't even explain, but has blessed our lives profoundly because we have a reprieve with her help.  But I can't even be her.  I can just be Mom.  Mom is enough.  I am enough.  It's ok to not only accept, but seek out that help. 

3.  Matt's life is teaching us SO many beautiful lessons that we couldn't learn without these trials.  I have always said that Matt saves us from us--we would be so different, distracted, misaligned at times without the grounding force of realizing we have a unique, special spirit in our homes that robs us of our ability to be anything but totally connected to him and each other.  

4. God is SO MINDFUL of this....every part of it.  People popped up, help came, and no desperate cry ever went unanswered, in both direct and indirect ways.  We always had the help we needed, or the stamina when there was no help.  Matt would miraculously be better when we had our worst days emotionally.  Somehow, someway, we were never left alone or abandoned, emotionally or physically (and especially not spiritually) throughout this entire process.  I read an amazing quote the other day: "Given the tremendous importance of these virtues (virtues that the Savior possesses) now and in the world to come, should we be surprised if, to hasten the process, the Lord gives us, individually, the relevant and necessary clinical experiences?"  God is trying to make something of each of us, individually and collectively, and this current clinical has the potential to hasten the growth He is so carefully nourishing through this specifically trial. 

5.  Comparison murders peace. I have found myself resenting parts of this clinical at times, envious as I watch others in the pandemic read books, do puzzles, hike, relax, spend time together, bond, rejuvenate.  Obviously that's not all that happened, but the slower pace forced upon us had so many beautiful aspects to it....and those same gifts represented what felt to me like a prison.  The slower pace sucks the life out of Matt--he needs a plan.  He never is distracted by himself.  He never leaves you alone.  He cannot, for more than a minute two (not exaggerating) entertain himself.  So the lack of other entertainment meant constant torture and unrest in our home, thus increasing the behaviors and exacerbating the problems, raising the stress and heightening the emotions that were already pretty dang intense in our home to start with (we are a gaggle of passionate geese).  When I let myself go down that trail of self-pity and situation-loathing, comparing myself to others or comparing my reality to a picture of what it might be like without Matt, I lost all chance I had of finding peace and joy and even pleasure in my life.  I became like a shell.  I had to consciously shove those thoughts out of my mind and replace them with new ones.  Not that I always did that perfectly, but when I didn't, I would pay an emotional price. 

So here we are in a holding pattern, unable to touch meds until we rule out a brain tumor. Once that is ruled out, we will tackle the possibility of seizures again (long story, but his neurologist said he no longer thinks Matt is having seizures....I might disagree.  Jury's still out).  After that, who knows, but I'm sure I will know when I need to know because, back to point #4, somehow, someway, just when it is needed, help (and in this case, answers) will come.  I have faith.  And I need a nap.