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.