Category: developmental delays

Part 1 of this story is here. You’ll want to read it first.

I want to try and tell you what it felt like to be told how significant Sophie’s developmental delays were.  Not just to be told, but to understand that you don’t know what you thought you knew.  That your reality is…not reality at all.

We buried my Grandpa on Wednesday.  Sophie had speech therapy that day, and as she and Joshua were too young, I felt, to attend the funeral, we sent Joshua to school and my friend Luanne took Sophie for the day and took her to therapy.  I sent a note with Luanne, asking Tanya, her therapist to call me.

Tanya called me on Thursday.  I think I went over the list of the preschool teacher’s concerns with her.  And then I asked her, “So can you tell me, how far behind on speech is Sophie?  Like, six months, a year?”

That was what I thought.  Six months, a year max.  After all, Sophie was three years and 11 months old, and she had known all her letters since age 2, all her colors, shapes, etc.  She even could recognize several words.  She had a great vocabulary, but she didn’t converse or answer questions.  I knew she was smart.  And stubborn. She was smart, sweet, and crazy.

“Her delay is significant.”  Tanya said.

“Significant?”

She then rattled off some test scores, and then admonished that “standardized tests are not the end-all be-all.”

“How far behind is she?”

“Her test scores were that of a child aged two years and four months.”

Sophie was three years and 11 months old.

“How long do you think she’ll need therapy?”

“She will likely need therapy for three to four years.”

Suckerpunch.  No words.  I don’t remember the rest of the conversation, except that Tanya offered to write a letter to Sophie’s teachers telling them how they could help her and what sort of expectations they should have for her, and to call and talk to them about it.

More crying. I called my husband, and my mom.  Cried some more. I made an appointment with Sophie’s pediatrician.  My mom started making calls to get information about getting Sophie into a preschool program that would be more appropriate for a child with her level of language delay.

Immediately, even through our shock and grief (yes, grief.  This sort of thing, a friend told me, has to be grieved.), we got the ball rolling on getting Sophie back on track.  A pediatrician appointment, a referral for an occupational therapy evaluation (they couldn’t get her in for three weeks), and phone calls and appointments to get Sophie into a preschool program for kids with developmental delays in our local public schools.  And almost immediately I started working with her at home on her hand strength and cutting as well as her speech.

But I was scared, you guys.  I was so, so scared.  I cried for days.  Howling, wailing, keening.  Like, I lost my sh*t. For at least two weeks, I would say probably close to a month, I didn’t talk to my close friends about any of this.  I couldn’t talk about it without wailing.  I am pretty sure Bobby thought I would never be normal again.  Joshua, who not quite seven, asked over and over, “Why is mommy crying?”  Sophie didn’t say much but did wipe away some of my tears at times, and snuggle me. Really the only people I talked to about it were Bobby, my mom, and Emily.  And Emily I just talked to about it over instant messenger because I can’t wail over instant messenger and therefore was much easier to understand.  I think I texted Cortney a little about it.  As much as I could stand.  I wasn’t embarrassed or ashamed or angry, but I was terrified.  “What if she can’t learn?” I asked Bobby over and over.  He tried to reassure me.  I KNEW she was smart, I KNEW she could learn, after all, it was because of all she COULD do that I had failed to realize how much she couldn’t do.

My mom told me that first day, that Tuesday, “The Lord made her, and the Lord’s going to take care of her.” I held on to that.  I cried and prayed to God, to help me to help Sophie.  To do the right things for her.  To put the right people in our lives to help her.

Praying comforted me, and I know God heard me.  But still the fear.  The fear was paralyzing.

To be continued.

Part 3 of this story is here.

I’ve never written this story before because it is hard.  But like I said, it’s time to start telling more of the hard stories.  I want be able to tell it all at once.  I’m not sure how many posts it will take.

It was October 5, 2010. It was a Tuesday. I was about seven months pregnant, and my Grandpa had been dead for three days.  That Saturday night, I had to call my cousin Mackenzie and tell her that Grandpa had died.  Mackenzie had come with her toddler from North Carolina and had been at my grandparents’ house all day.  Grandpa had been failing for a few weeks but he was…he was ok that day.  He was joyful at meeting Mackenzie’s daughter, Molly, for the first time.  Mackenzie fully expected to see him again the next day.

Mackenzie and Molly came to my house for dinner.  We had an awesome time.  Then they went back to their hotel.  By the time they got there, our Grandpa had died of a massive heart attack in his bathroom.  My mom called me.  Grandma can’t get the bathroom door open.  Rescue squad on the way.  She calls again.  Grandpa passed away.  Can I call Mackenzie?

“Hi cousin, what’s up?” she must think it’s weird that I’m calling so soon after she left my house.  Have you ever had to make that call before?  I didn’t know what to say.  I pause, struggling.  “Grandpa died.”  It’s all I could say.  I think I blurted out the few details about the bathroom and the rescue squad.

I can’t remember what she said back.  Or much else about that night.  I know Mackenzie packed up her toddler and went back over to my Grandma’s house.  Just Grandma’s house now.

But back to Tuesday.

I am dropping Sophie off at preschool, and one of her teachers says to me, “I wonder if you had a few minutes to talk.”  I don’t want to talk, but what can you do? She leads me into another room.  I am too tired and drained to even wonder what this is about.  My Grandpa’s funeral is the next day.

“We have some concerns about Sophia.” she says.  I sigh internally. “Ok.” I say.  She starts to read from a list.

“She can’t follow simple instructions.” Yes she can, I think. But I let her go on.  “She just stands there when I tell her to wash her hands.  I have to help her do everything.”

“Ok, well, I don’t know why.  She washes her hands at home.”

She goes on.

She isn’t interested in the other kids.  She won’t do any of the crafts, she just sits there.  She doesn’t really play with toys, she just wanders around the room.

I’m not overly surprised by some of these things, what I’m surprised at is that SHE’s surprised. I told her teachers before preschool started, when we’d visited the class, that she had a speech delay, was in therapy, and I gave them a list of things about her that I wanted them to know.  Some of these things were on the list.

On the other hand, I am concerned that she is not engaging more with the others.  This isn’t something I’d expected.  And the thing about doing the crafts and the work, well I’d never been able to get her to do any of that at home, and I was hoping she’d just fall in line at school. But apparently she wasn’t going to.  Her teacher said she seemed to hardly be able to hold a crayon, that she had no idea what to do with scissors.  Questions raced through my mind.  Was it that she couldn’t because she wouldn’t or that she wouldn’t because she couldn’t?

I left the room upset and barely holding it together, but trying not to show it.  I had already been crying for days.  I took the list of concerns the teacher gave me.  The next day Sophie had speech therapy, but I couldn’t be there because I’d be AT MY GRANDPA’S FUNERAL.  This was the LAST thing I needed that Tuesday.

I can’t really remember what I did next.  I called my husband and my mom and read the list of concerns and probably cried a lot.  I was very confused.  Sophie had never been a “joiner” and I felt like it was going to take her a long while to adjust to preschool.  She’d only even been to seven classes at this point.  Was it just that she was going to be a slow adjuster?  Or did she have more problems than just her speech delay?  Her speech therapist had just recently finished testing her and we didn’t even have the results yet.

I tell you what, it is hard when you sit across a table from someone and they tell you something about your kid that you don’t want to hear.  Especially when you are already an emotional mess.

Tuesday was rough.  I did not enjoy Tuesday.  But I decided to deal with Tuesday on Thursday.  Because Wednesday, we had to bury my Grandpa.

To be continued.

Part 2 of this story is here.