My child has special needs.
I may have mentioned Tink's speech delay in past posts.
I may not.
Either way, you may have noticed the way I put things in "Tink speak" and wondered, "How old is he? Shouldn't a child his age be able to say things clearer than that?"
Well, the answer is yes.
That is why he's been in speech therapy for going on two years.
He'd been receiving therapy through the clinic on SIU's campus and, due
to some issues with being short supervisors and scheduling, we unfortunately
had to discontinue services this semester.
This means he has been without therapy of any kind for a few months.
That fact made me nervous as his mama.
I know we are planning for him to begin kindergarten next fall and I want to prepare him for that in every way possible, including his language skills.
When I met with his Pre-k teacher a few weeks ago, his language was one of the only concerns she had with Tink.
**Language and writing. This kid wants to read SO badly, but he doesn't
want to take the time to work on his writing and journaling, both of
which will help him on the road to learning to read.
Don't fret, though. Mama laid the journaling smack-down
and he is spending more time on it every day.**
So, I decided we couldn't wait until next semester to begin speech again.
I called the folks over at the local school district and said I wanted to reactivate his IEP.
Fast forward to this morning...
I had an IEP meeting first thing. I knew they were planning to
give Tink one therapy session a week.
That therapy session lasts only 30 minutes.
Those 30 minutes include the time it takes to walk to and from the
classroom from the school's front office.
We're looking at maybe 25 minutes of therapy.
That isn't much.
He was doing two therapy sessions a week, 40 minutes a shot, when he was
having service through SIU's clinic. He'd come so far with them & I truly
believe part of it was the frequency of therapy.
So, after sitting for a couple of minutes with the folks at the school district and
discussing the progress Tink has made since our last
meeting (in May of 2011), I asked for additional therapy.
I said I would really like to have him seen twice a week.
I knew the therapist had the availability because she'd offered
me my choice of early mornings.
I was told they start with only one day because they want to keep them in their least restrictive environment (LRE), that bringing him two days would take him out of his school setting, throw his schedule off, disrupt his educational process.
I let her go through her spiel, waited for a few minutes while the other woman there dealt with printing some papers, and approached it again.
I explained that I understood what she was saying about LRE, but I was concerned about there only being five therapy sessions left this year (due to Thanksgiving and New Years), I didn't want to waste time, and I wasn't sure how long it would take for him to warm up and even begin participating in the therapy. I said I would like to start with two days and, if deemed too much, then we could scale back to once a week. I noted his progress with the clinical center being great, but it was four times the amount of therapy he would be
getting at the school district.
Again I was told no.
She reiterated the bit about LRE, said it was not recommended to start with more than one session a week, and told me that they couldn't look at it the same as the clinical center did. They look at it from a medical standpoint, but the district has to look at it from an educational standpoint.
I am his mother.
I am looking at it from a "What Is Best For My Child" standpoint.
And I am furious.
I started the morning with a hopeful, positive attitude.
I wanted to believe that if I walked in there as a mother trying to do what is
best for her child, I would be received warmly and be given what I was asking for.
I knew the law was on my side.
I knew I had rights.
By the time I was walking out of the meeting, just fifteen short minutes later, I was crushed.
I was frustrated.
I was disheartened.
I did not feel like the law was on my side.
I did not feel like I had rights.
I even felt, based on how the LRE part had been stated, as if I would be
doing Tink a disservice by trying to get him in therapy more often, that it
would be unnecessarily disruptive to his routine.
I managed to make it most of the way to the car before I lost my ability to
hold back the tears.
If anyone in the houses across the road was watching, I'm sure they wondering what in the heck was wrong with me and why I was doing the "ugly cry" in the street.
I called The Hubs (he is out of town) to let him know how the meeting
went, but he didn't answer.
I knew there were other people waiting to hear how things went, but I just wasn't composed enough to make any other calls.
The best I could do was post a status on Facebook alluding to the
meeting not having gone well.
I mean, I had posted a message earlier asking praying folks to say a prayer on our behalf and non-praying folks to send us some good vibes.
I knew I owed some sort of update to all of them, too.
I couldn't do more than that, though.
I was barely able to see through my tears enough to get the status posted.
Lord only knows how many errors I left in the dang thing.
And, after posting it, I couldn't muster the emotional energy to check back.
I didn't want to have to explain anything.
I didn't want to feel like I needed to respond to anyone.
I simply felt as if I didn't have the mental or emotional capacity to deal with it.
My goals for the rest of the day were simple:
1. Refrain from random sobbing outbursts while still at work.
I mostly accomplished this goal.
2. Send an email to my Special Education instructor to let her know how things went. She'd offered to help me with getting things figured out & I told her I would let her know how things went at the meeting. I did get this done.
Goal #2 took me until early afternoon. I couldn't sit in front of the computer and even begin to type the story of what happened without my eyes welling up (See goal #1 for why this was a problem). Once I finally managed to get the email completed, I sent it off, and heard back from her really quickly.
Let me say this:
This woman knows her stuff.
You need to know something SPED related, she's your gal.
And, she doesn't take any crap. She is a good one to have in your corner, especially
if you are an overwhelmed parent trying to figure out what you are doing and
how you should be doing it.
I cannot begin to explain how grateful I am for the back & forth emails with her today.
She made me feel supported, like I have a right to demand more, that I really am my child's advocate, and the law certainly is on my side. I also have no doubt that if there is anything she can do to help me make it happen, she will.
And, from there it only got better.
I had not one, but two (YES TWO!) people bring me Diet Cokes at work today.
You girls know me too well.
"Patty is sad? Pssht... A Diet Coke will clear that right up!"
What was sweeter? The second Diet Coke was accompanied by hugs from two amazing little girls who'd made the special trip with their mama. One of those little ladies deals with some special needs of her own. She has Aspergers syndrome, a disorder on the autism spectrum. They are dealing with plenty in their own right, yet they took the time to come comfort me.
And they weren't the only ones.
I finally worked up the energy to get back on Facebook.
And the support was amazing.
It ran the gamut, from people saying they were sorry the meeting didn't go well, to folks saying just to think of my beautiful babies and keep my head up.
One of my best friends from junior high (Yes, I said junior high. Do you not just LOVE Facebook for its ability to reconnect people?!) is a speech pathologist in the Northwest. She offered to Skype with Tink in an effort to figure out what is going with him and help us learn how to work with him at home.
Another mama of a special needs child offered to attend a meeting with me. She not only has a little one with special needs well beyond what Tink has going on, but she also has two other children. She is a BUSY woman. Yet she is offering her time to me.
No, she is offering her time to me AND Tink.
The meetings are for him.
Others were sharing the success stories of their loved ones who'd had speech issues. Some simply said, "Hey, that really sucks and I'm sorry you are having to go through it."
It was what I needed.
I really needed to feel the love, even if through Facebook.
I needed to find a sense of peace and calm.
I needed to be told it was all going to work out.
I needed some help to lift the weight from my shoulders.
And all of these beautiful people did that for me.
So, this blog post is for them.
I can't describe my gratitude.
It is immeasurable.
You may never know what you did today, the difference you made,
the imprint you left on my heart.
I thank you for it.
Tink thanks you for it.
Our entire family thanks you for it.
You are all such BLESSINGS in our lives and I am so thankful for your
willingness to share in our lives, our hardships, and our triumphs.
We love you.
