When all you want are the stars

Today I held my friend’s new little girl. I fed her and rocked her.  She looked in my eyes and smiled, snuggled against me.  She was all things good and lovely about babies.  It’s been a very long time since I’ve held a baby that long and I loved every second.

That’s why I was wholly unprepared for the ache I felt as soon as I put her down.  Memories of my baby Helen consumed me with an unexpected suddenness and intensity.  How she struggled to eat, gagging and screaming…each feeding lasting at least an hour.  Often more.  How her eyes never, never looked into mine.  How she turned from me every time I picked her up, her back arched, her tiny fingers curled into fists.  How even my presence seemed to cause her pain.  How can a mother not comfort her own child?

But it was time to take Helen’s class outside.  Deep breaths.  Keep moving.

She’s been doing amazingly well at her Preschool class and today was a good day.  Still, she was beginning to get agitated on the playground.  Without thinking, I tried to pick her up.  She pushed on my chest, hard.

Don’t touch me, momma!

And the ache got stronger. Even now, after so much good, there are times I still can’t hold my own daughter.  Deep breaths. Keep moving.

I pushed her on the swings, instead, and she was ok again.

Usually I tell myself all the good things about that moment.  Oh, look.  She recognized what she needed and told me.  She didn’t melt down.  She quickly recovered. 

But today I wanted to scream.

I don’t care what she did.  My own daughter just pushed me away.  She’s been pushing me away her entire life.  Somebody make her love me.

Of course, I know she loves me.  Some days it’s just easier to feel.  Today is not that day.  And I’m too tired to sort the truth from the argument between my head and my heart. It’s time to go.  We tie shoes and load backpacks and excited preschoolers find their mommas.  Then it’s home.  Matthew fills me in on the day. I wash out lunch boxes and unload backpacks.

Then finally.  He’s off to conquer something Lego, she wants to watch cartoons.  I can hear her through the door.  I close it and let that ache from the darkest places of my heart go.  And I cry until my head hurts and my eyes are swollen.

Are you ok, mom?  You’ve been in there awhile.

I’m ok, buddy.  I’ll be right out.

Thankfully, he goes back to his room.  I splash water on my eyes and come out.  Helen doesn’t even notice me. Again.  I fix coffee and take deep breaths.  I change into clothes that are soft and I pray.

She walks up to me.  Does she know how much I love her?  How much I always have? A cardboard tube, one end covered in paper, and a flashlight.  They learned about the night at school. This is her project.  She hands it to me to fix.

I want the stars, momma.

So do I, Helen. So do I.

5 tips for a vacation (that actually feels like a vacation)

We recently returned from a perfect family vacation. We had two goals for this trip: relax and spend time together as a family.  And we did.  Here’s how you can, too:

1. Be realistic – While everything can’t (and shouldn’t) be about Helen, she does have very real limits and needs over which she has little or no control.  Keeping this in mind makes the trip go smoothly for her and, consequently, everyone else.

2. Simplify travel – By the time we usually arrive at wherever we’re going, Helen is already working with a deficit.  The more complicated the travel, the harder it is for her nervous system to stay regulated.  Whenever possible, choose travel methods and times that are the least likely to be busy or chaotic.  We chose a location close to home and left on a Sunday morning.  When we pulled up to a restaurant and it was busy, we passed out snacks and kept driving.  We ate later at a much quieter location.

3. Social Stories – Of course.  Our destination had lots of pictures online, and we made sure to look at them often.  I also made a picture story of things specific to our family.  For instance, the first part of the picture was all of us driving, as well as things we might me doing in route (reading books, playing on the IPAD, stopping for a snack, even looking out the window).

4. Pack well – I made sure to pack Helen’s favorite stuffed animal and baby doll.  Her clothes were comfortable favorites (with tags).  Since we would have access to a kitchen, I made sure I had plenty of Helen-friendly foods.  And, of course, all our go-to therapy equipment was on hand.

5. Know what you need – Since eating poses one of Helen’s greatest needs, having a kitchen was a huge sanity-saver.  Think about what would be the most helpful for your family and plan accordingly.

So, where did we go?  We rented a cabin at a State Park during the off-season.  It was quiet, but there were lots of activities in walking distance.  This meant we could try things as a family with little risk.  If things became too stressful, Helen and I could just go back to the cabin and the boys could continue on.  We had a kitchen, so food wasn’t a constant issue.  It was a short drive, eliminating the need for frequent stops.  It was exactly what we needed.

Life through the Lense (a peek at our week)

We just returned from a family vacation.  It was perfect. Why?  It was our first vacation since Helen (which means we’re all handling things well enough to make that happen).  And, it’s the very first time we’ve done anything with Helen where the memories are so very good.  No meltdowns, no withdrawing.  She ate enough and slept enough.

She was happy.

And so were we.

More next week on how we made that work. For now:

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Happy weekend, everyone.

Alan and Jennifer

Life through the Lense (a peek at our week)

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Helen can sometimes find organization to be a challenge.  Um, yeah.

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If you have trouble “feeling” muscle control, using a cup can be tricky.  Putting juice in a heavy coffee mug (instead of a plastic cup) helps.

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Helen spent some time this afternoon carrying buckets of water to make mud.  This is actually excellent therapy.  Seriously.

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This is Helen barefoot on the grass! Until just this month, she couldn’t tolerate the feel of it, at all.  When she first tried to step on the grass, Matthew and I stood cheering her on.  Matthew told me: Mom, I don’t think most families cheer on their 4-year-olds because they walked on the grass.

Probably not.

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Matthew is determined to teach Helen to write her name.  He probably will, too.

Have a great weekend!

Alan and Jennifer

How to survive the dentist (and why being nice matters)

Helen had her first dental appointment.  I did not expect it to go well, at all.  Of the list of things that can cause her to completely melt down are being leaned back (as in a dentist’s chair), noise, bright lights, unfamiliar situations and anything in her mouth.  Honestly, I would have skipped it altogether had I been able.  But feeding delays can cause all sorts of issues with a child’s mouth and I had already put this off too long.  So, we went.

And it was amazing.

Julie, the dental assistant, went out of her way to help us.  She was patient and seemed to genuinely care about Helen.  She even worked on Cinderella (the doll who came with us, of course) first.  I found out later that a late patient early in the day had caused her to be far behind schedule, yet she gave us all the time we needed.   It was so important that things go well, and Julie made that happen.  Being nice really does matter, sometimes more than we realize.

So what else made this visit work?  Here’s what we did:

Visit the dentist – We scheduled Matthew’s visit for the day before Helen’s appointment.  This allowed us to visit the office and watch what would happen (thank you, Matthew).  I made sure the same assistant saw both children, so she would be familiar to Helen. If you don’t have a big brother, just visiting the office ahead of time can help.  If that isn’t possible, try social stories instead.

Role-play – We played “dentist” many times surrounding this visit.  I made sure Helen had an electric toothbrush (it moves and makes noise, like dentist tools) and even bought latex gloves for her to try on.  We put them in our mouths so the taste would be familiar.

Talk to the office staff – My entire goal for Helen’s visit was that it be a positive experience.  I made it clear to the office staff that I was willing to come back another time (and pay for additional visits), if necessary, to actually check her mouth.  This visit was all about getting her comfortable.  With the assistant who would most be working with Helen, I went over her top triggers and my plans to help her.

Come prepared – We had headphones, her favorite doll, her weighted blanket, clothes with the right tags, everything I could think of to help her be more comfortable.  I also increased her calming therapy routine the morning of the visit to have her as ready as possible.

It was so much work and I’m glad it’s done.  And to Julie, a thousand thank-yous for being so nice.

 

 

 

So maybe it’s not my fault…

Today has been a long day.  Our Epsom Salt miracle stopped working some time ago, so sleep has been too brief and too interrupted. This, of course, finds its way into everything else.  After a busy weekend, Helen woke up unable to eat and refusing to do much besides lie on the hard floor and watch TV.

Mama, I’m hungry.

So I fix another plate.  Then something else.  Still, she can’t eat.

Mama, I’m hungry.

I did all her brushing and joint compressions and finally coaxed her out onto her swing.  Then we spent an hour in the kiddie pool and another hour in the tub (all these things help her relax).  Finally, she ate something.  It’s 3:30 in the afternoon.

Ugh.

My immediate (and typical) response is to begin replaying the last several days.  Maybe we should add that therapy back in or take that one out.  I probably shouldn’t have let her go to the grocery store with me.  Maybe it’s because we stopped for gas..that wasn’t on the schedule.  If I could get to the store, maybe I could find something she could eat…

And on it goes.  Then I remembered something I read recently on another blog:

Just because this is hard, doesn’t mean you are doing it wrong.* 

It doesn’t.  Some things are just hard.  Today is one of them.

So, maybe, it isn’t my fault after all.

 

*from a post in Not the Former Things

Books that helped me understand my daughter (and myself)

These are the books I’ve read (and reread) over the last two years that I found to be the most helpful.

Homeschooling Children with Special Needs – Whether or not homeschooling is for your family, this book is a great resource.  She discusses “differences” vs “disability”, reviews all kinds of learning challenges and provides resources (and lots of them) for each.

I Believe in You – Rather than a practical how-to, this book tells the story of one mom and her daughter.  I started reading this and couldn’t put it down.  It taught me two things: I’m not crazy and I’m not alone.  I’ve read it many times.  You can also go here to check out her blog.

Raising a Sensory Smart Child – Written by a mom and the OT who helped her son, this book provides practical, everyday ideas for incorporating a sensory diet. It also explains SPD and how it can affect children.

We hope something here helps.

Best Wishes,

Alan & Jennifer

Perspective

We have a door in our house that is so important to me.  Inside are dozens of tiny lines marking how our kids have grown. Alan started when Matthew was two and every few months they line up to see ‘how big” they are.  We used the inside of the door (rather than the door frame) so I can take it with us if one day we sell this house.  It’s precious.

A couple of weeks ago, Helen came running to me.

Mama, come see what I drew! 

And she showed me this:

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Our door.  Covered in her scribbles.  But I couldn’t be angry.  She had no idea she wasn’t supposed to draw on a door.  We never told her. Do you know why?  Until recently, she couldn’t hold a pencil…or much of anything else.  Not for long, anyway.  And never for fun.

Mama, come see what I drew!

What. She. Drew.  With a pencil.  Month after month of folding her little hand in mine to hold a crayon or a spoon, to fasten her shoes or pull up a zipper.

This way Helen.  Now you try.  Try hard, you can do it.

Over and over again.

Day after day of messy shaving cream, sand, paint, anything that gave her fingers practice on understanding what her brain was trying to say.

For this.

Mama, come see what I drew.

I did go see.  And what I saw was beautiful.