Doing something about it.

Part 1 of this story is here, and part 2 is here.

You’ll want to read them first.

Sophie wrote her name for the first time on December 14, 2010, about 2 months after we started working together. Of course I took a picture!

Despite my terrible fear about the scope of Sophie’s delays, I started working with her at home immediately.  I really had no idea what I was doing, but at least I was doing something.  I googled and started out very basically with speech ideas from Sophie’s SLP and basic cutting, coloring, play-doh, and those type of activities for her hand strength.

About a month after that  fateful Tuesday, Sophie was able to start occupational therapy.  I had been doing my best with her at home and she had already made progress.  But once she got in OT, she made lightning-fast progress in the fine motor skills department.  Her speech sessions continued to go well at therapy and at home.

Around the time she started private OT, I was working with her at home one weekend when she actually cut, for the first time by herself (with special scissors), a line about 3 inches long.  She cut up a line on construction paper.  I burst into tears. LOUD tears.  Sophie looked at me like, “What is WRONG with you?”  Bobby came into the room.  “What’s wrong? What happened?”

“She cut! She cut!”  I held up the paper and sobbed.  She had done it.  She had shown me, that she could learn.  That she could learn from me.  It was a real turning point for me, an encouragement to keep on working, that she and I could do this together.

The paperwork to get her into the new school – a classroom made up of 1/2 kids with delays and 1/2 “typically developing” – was overwhelming.  At one point I lost a medical form and I FLIPPED OUT.  I tore the house apart looking for it and I broke down WAILING and sobbing over the form.   I scared Sophie to death with that  breakdown. Did I mention I was eight months pregnant at the time?

I found the form UNDER my laptop.  Then, I cried some more.  Tears of relief this time.

The evaluation process to get her qualified for the “special” class was a nightmare.  Sophie cried the whole time and would not perform at all.  Fortunately, they qualified her based on our testimony and her scores from her speech language pathologist, as well as what observations they were able to make.  Sophie and I vistited three schools and picked the one we liked the best.  I ended up feeling really good about the teacher.

(And here I must insert proof of God’s faithfulness to my daughter: of those three schools I visited, the other two – the ones I did not choose for Sophie – were closed by the district the next year.  Had I chosen one of them, she would have had to switch schools this year.  Despite the fact that one of the ill-fated schools was recommended to me over the one I chose, I went with my gut – a gift from God, I believe.)

At the meeting to write her IEP before she started her new school, the supervisor asked us what our goals were for Sophie.  I had one primary goal. “I want her to catch up so she can go to a regular kindergarten.”  I said.  At that time is was November 2010.  She would have the rest of that school year, and the whole of the following one, to meet that goal.  In my heart, I knew she would.

About seven weeks after that first talk with her original preschool teacher, and two weeks after her fourth birthday, Sophie started preschool at a new school, where her teacher was an intervention specialist and she would receive speech and occupational therapy.  So now we had her in private speech and OT, school speech and OT, and “Mommy-Sophie time” work at home 5-7 times a week.  Her teacher, for sure, was a definite answer to my prayer that God would put the right people in Sophie’s life to help her through this.

Her progress and response was immediate.  She began, as her private occupational therapist put it, “blazing through her goals.”

But still we worked.  We worked HARD at home.  I was kind of a nazi about working, but I also made it as fun as possible.  Books, puzzles, markers, crayons, white boards, putty, cutting books, scissors, board games, took over our dining room. We worked.

And then I had a baby.

And then we worked some more, writing and cutting and playing games while I nursed. I won’t lie, sometimes these work sessions ended with us both in tears. But for the most part, they were fun, and they served to tighten our bond.  We were doing something very big, very important, and we were doing it together.

We went to therapy, speech and OT, once a week each. Baby in tow.  I tried not to lose my mind.  And Sophie started catching up.

It was very, very hard.  Having a newborn and helping Sophie with her delays -the constant maintenance of both of those situations nearly killed me.  But I had my eyes on the prize.  It wasn’t easy. It’s not a time I look back on with really warm memories.  I definitely don’t want to do it again.  But it was very, very worth it.

In January, Sophie’s therapy clinic abruptly closed (as in, with no notice whatsoever.) This meant we would lose her therapists, Tanya and Paula, who she loved.  I was completely devastated.  But God was faithful.  He brought us a new speech language pathologist, Kristen, who was such an amazing blessing.  And Sophie was able to start with her within just two weeks or so.  She had to wait much longer to get into OT, but with our work at home and her OT at school, that turned out all right.  Once she did get in, her new OT, Christy, was also just wonderful.

If you are a regular reader of this blog, you know the rest of the story.  If you aren’t, let me shout it from the rooftops with JOY: My beautiful, funny, smart, talented daughter completely caught up – and then some – in only 18 months of therapy rather than 3-4 years.  She has been dismissed from special ed, no longer requires an IEP, reads at a 1st-grade level, and recognizes sight words on a 4th-grade level.  Today is her last day of preschool.  She will start a “regular” kindergarten in the fall. On her kindergarten-readiness evaluation, her teacher wrote, “Sophie is a leader in the classroom, she loves helping out everyone and enjoys above grade-level challenging work.”

Sophie & her preschool teacher on her next-to-last day, May 23, 2012

So we have a happy ending, and I am beyond thankful.   I cannot truly express how thankful I am.  And I am SO PROUD of my hard-working girl!  I hope our story can be an encouragement to others.  Though it is hard to think back to that fall of 2010, I do so with a grateful heart.  As hard as it was, it has been made equally good.

But seriously.  Did I already say this? I DO NOT want to do that again.  And I hope you never have to.  But if you do, let’s talk.  You are not alone, and you can help your child.

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22 Replies to “Doing something about it.”

  1. Praying for you both then and now and always! So thankful and so excited for her first day of kindergarten in the Fall!

  2. I needed this. Chase has been in speech therapy for 7 weeks now and he starts preschool this fall. I seriously just can’t thank you enough for writing this. I feel far less alone now. Thanks!

    1. You are so NOT alone, but we all think we are alone because everyone is afraid to talk about stuff. We all want to huddle behind a veil and pretend everything is a-ok, otherwise someone might decide our kid is this or that. I had a real fear about that. Problem is that doesn’t help our kids! That’s part of the reason I’m speaking out, but even then, it took me a long time to do so, so I’m not exactly a hero. But I want people to know that I’ve been there so they can ask questions and have encouragement that this stuff can be overcome. And we as parents do have the power to help our children learn and get through the hard stuff.
      **end of impassioned speech**

  3. Seriously have tears in my eyes. I can’t imagine the emotions youve gone through these last few years. Praising God with you!

  4. This was a great series, Jenny. I know pretty much nothing about giving my kids extra intervention; your posts have encouraged me to figure out how best help me kids in the areas where they struggle as well. We’re going to do Kindergarten again next year b/c my wild-one is the very youngest in her class and needs extra help with reading before moving on; I have some work to do over the summer to bridge her over to next year. Thanks for the encouragement that it can be done!!!

    1. Good for you!! So many parents who should hold a kid back don’t because they are afraid of the stigma. I was a September baby and my mom didn’t put me in kindergarten til I was a week away from my 6th birthday, instead of starting me a year earlier when all my friends were going. She could have let me go early, and I certainly cried about my BFF going to kindy a year before me, but I know mom was right and I am sure it made a huge difference in my life. Your wild child is so much better off since you are taking care of this now rather than in 3rd or 4th grade when it would be much more difficult socially I think. Check out PediaStaff of Pinterest, they have 50 bajillion boards but they have a great reading board! I can send you a link if you can’t find it, just message me.

      1. I will definitely check out PediaStaff! Thanks for the tip. I am also a September baby, but started school too early. I was just eight years old going into 4th grade; it was that year that they finally said I was struggling to keep up too much and had to repeat the year. It was definitely hard. It was almost like starting over at a new school because I had to make all new friends. BUT, my I was much more in-tune with everything going academically on after that. I know, personally though, it will be much better to hold her back this year instead of four years from now. 🙂

  5. Jenny, i’m so, so hapy for the ending of your story… It’s been an honor to read it and i’m so thankful you shared it with us! I’m sure it was hard for you, but on the other hand i hope you were able to feel a real relief to be able to put it out and share with the world how wonderful Sophie is. Because she would always be, obviously, whatever the outcome, but this achievment, both for you and for her, is even bigger. It’s the result of team work.
    Congratulations to everyone who played a part in this: family, friends, teachers, therapists, and so on… You’re all real heroes!

  6. What a great, happy ending! And what a testament to your love and care and work and fighting for the best therapies for Sophie.

    My son is 5 and will be entering kindergarten and has been going to OT for two years now. The first OT, he didn’t progress very much, but with the person we have been seeing since the fall, he has been zipping forward! Great therapists definitely make a difference too.

    Thank you for sharing your story.

  7. My son just turned two and is very delayed developmentally. I too have another baby and still work really hard with him everyday. He is about to start the special preschool this month. I’m glad to hear your story and glad to know there is hope that he may catch up.

  8. Jenny, thanks for sharing Sophie’s story! I just found your blog and I’m loving it. I was in the middle of a horribly difficult pregnancy last summer when my son was evaluated and diagnosed with autism and accompanying delays. My dad had a heart attack around this time too. It was the most insane time of my life. It was really helpful for me to read about your crying, howling, wailing, and keening. I did the exact same thing. The fear was real and the grief was real. My world was literally upside down and falling apart. I had tons of moments talking to family on the phone and bawling and panic attacks. I was living in crazy town. I’ve never prayed more in my life and I had to let God carry me through.

    Thank you again for sharing. Sophie gives me hope for my son! He’s significantly delayed in speech and will start developmental preschool in the fall.

    1. Thanks for your comment Haylee! It really is an indescribably hard thing, but I am glad my words hit home with you. Feel free to email me if you ever have questions or want to talk about it. My son Jonah, who I was pregnant with when Sophie’s delays smacked me in the face, now has a speech delay too and just started preschool this past week for it. He is doing great but it’s been hard going through even a tiny bit of it again. I’ll keep you in my prayers, here’s hoping your son takes to preschool like Sophie did. It made such a big difference. Take care!

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