If you have a child with a disability 
you have probably gotten "the feeling".   
The one you get in the pit of your stomach 
 when you see a typical kid doing something 
and you wonder if your child with a disability 
will ever be able to do it.   

And you hope that it will happen.  
But you have to be realistic and 
in the back of your mind you know 
there is a possibility that it won't.  
But you don't want to sell your child short 
so you go back to hoping it will happen.  
And then that realistic part of you 
taps you on the shoulder.
And you know that no matter what 
your child accomplishes you will love them
and accept them for who they are.
  You go back and forth.  
Wondering, hoping, accepting.   
Wondering, hoping, accepting.
It's a delicate balance, this parenting gig.  
Throw in a child with a disability 
and you find yourself teetering. 
Some days more than others.

Then comes the part of parenting 
a child with a disability called regression.  
When your child has a skill  but then they lose it.  
Or they get beyond a negative behavior then pick it up again. 

 Apparently summer regression is pretty common
 among kids with Down Syndrome.  
Lila is only 5 so this is pretty new territory for us. 

Lila has regressed this summer.  
 In a big way.   
My lofty goal of having her totally potty-trained
 before the next school year 
went right down the..... 
well, you know.   
She was "mostly" potty trained at the 
beginning of the summer.   
Then we had her port installed, and waited
 too long between treatments. 
Unfortunately a common side effect 
of not keeping IGG levels at a consistent level
 is constipation.  
Now she's barely potty-trained at all.  
We have her on a schedule, put her on the potty, 
and she says the same thing almost every time.  
 "I can't.  My bottom hurts."   
Sometimes we get lucky and she will go.   
I almost want to have a party when it happens. 
 She's 5, almost 6.   
It's starting to be very discouraging.

 Back to the port, it has been very difficult for her.   
She has Sensory Processing Disorder 
and that port really bothers her.   
She just can't figure out why she has 
something underneath her skin.  
She messes with it constantly. 
 She shows it to us and
tells us, "This my port."
It got a little better after she had her
 first treatment through the port.  
She got so excited when she realized 
it no longer hurts to get her treatments.   

Of course we had to strap her in a Stokke chair 
and it took both Nick and I holding her still
long enough for me to put the EMLA cream 
on the port to numb it before treatment

 She is so on edge, over-stimulated, 
whatever you want to call it, 
that she doesn't even give full hugs anymore.   
She gives little sideways hugs. 
 She's a big sensory mess.

In summer school the past three weeks 
Lila ruined about 6 shirts.  
By chewing on them.   
When she was 3 she would chew on long sleeves 
occasionally when she was over-stimulated 
so we bought her some chewelry.   
They worked well!  
We sent them to school with her,
she used them when she needed them, 
and was done "chewing" in about 6 months.  
Guess what I ordered yesterday?
 I feel so bad for her 
and I don't know how to fix it. 

Yes, we have told her not to chew on her shirts.   
There have been consequences.  
It just doesn't seem like something 
she can control right now.

Lila has also regressed in handwriting.  
Even though we have been practicing.
She absolutely loves writing her letters.  
I really thought she would be able
 to write her last name by the coming school year.  
It's not going to happen.  
She's not even close.  
She can write her first name. 
I'm thankful for that. 
 I know a lot of kids can't do that 
and I try to keep that in mind in times like this.

While I sit and write about how I feel 
about Lila's regression, I know it bothers her as well. 
 When I take her to the potty 
she will say, "It dry, mama".   
And I say "No, Lila, it's not dry.  It's wet.  
We'll keep trying."   
Then she says, "I sorry, mama".  
Sweet girl.
Again, I wish I could fix it.

Thankfully there is 
so much good stuff.
So much.

Sometimes you just have to talk 
about the not-so-good stuff too.


  1. Tears. She's such a good girl and has always tried so hard. Such a trooper.

    And you. You've always tried so hard, too. And still, this.

    But goodness. Three moves in 8 months, new schools, teachers, drs., hospitals, friends, besides the port, so many things. It sounds pretty overwhelming for an adult! How YOU doing with all those changes?!

    It will get better. She will get back up to speed, I truly believe that. Hang in there, mama, and don't beat yourself up over any of this. Just keep loving and supporting her which I know you will.

  2. Oh Linda, my heart is crying. Sweet Lila is such a good girl who tries so hard and has been through so much. A port would drive me bananas too. The shirts. . .yeah we have that problem too. I now offer Ellie chewelry (we have 5 different chewy tubes) and a lovie. The lovie is a lot like her shirts, but sturdier so the lovie gets used a lot. . . I just worry about kids making fun of her when she is older. Anyway, maybe giving Lila a piece of clothe or a little blankie may help as it is similar to a shirt? Hang in there mama. "wondering, hoping, accepting" is something that I think all of us mamas with special needs kids do. Thank you for your honesty.

  3. I so appreciate your honesty and vulnerability here. Yes, sometimes we do have to talk about the not-so-good stuff in our lives. You give others a safe place. Cheering you and Lila on today.

  4. Hugs to you and to Lila! I think it is so important to talk about the bad with the good. I know it rolls around in my head until I write it all down. :) Can't wait to see you all at the end of the month.

  5. I constantly feel like my thoughts go in circles. Love the outlet of blogging, being able to get both good and hard thoughts out in black and white

  6. I can relate to so much of this. I'm beginning to wonder if Shannon will ever say more than "No Mama" clearly. At 8 years, you start to think that it might not happen. We've had issues with constipation and Dr. R suggested fiber gummies which seem to be helping (that and an orange a day). Hopefully things will improve for Lila once she gets into a new routine with the port and everything else.