October 26, 2010

A Journey to an IEP






Developmental Delay.

How should I feel?

I'm not sure, but the overriding feeling today is RELIEF.

We have a starting point, a place from which to MOVE FORWARD.

On Thursday, my baby boy, our little five-year-old son will begin a new journey.

Complete with an IEP (Individualized Education PLAN).

Back in September, our Li'l Dude was *screened* by our local school district.

Let me back up. In March 2009, our Li'l Miss at age 3.5, was *screened* and found to be inelligible for ANY SERVICES. She was given N.O.T.H.I.N.G. She was not delayed at least moderate in two of the five areas or delayed severely in any one area. She was found to be delayed only in expressive speech delay.

Oh if I only I had known what I know now.

You truly do LIVE and LEARN.

Now I am proud of our Li'l Miss and the progress she has made. And in a way in which I try to be humble, I am proud to say I've been the one by her side pushing and praising and pushing her some more. She just began speech therapy through the school district in late April-May until school let out and she began again in September. Other than that, I've been her teacher, cheerleader, trailblazer seeking answers and avenues for support.

And it has been hard. And rewarding. And at times frustrating. At times leaving me wondering and without answers. At times very lonely. At times so proud I could burst.

This time, though, when I was told our Li'l Dude needed *more time because he was just adopted* ... I fought back. I didn't sign the paper. Did you know you can refuse to sign it? GASP. But you can. You ARE your child's best advocate. I was afraid to protest last time. This time, I knew I had to protest. For Li'l Dude's sake.

I don't mean I literally fought, though some of you may be trying to picture that. I mean, I pushed. And pushed again. Until they listened.

I sat in an uncomfortable meeting demanding more evaluation, more answers, more explanations for why a little boy who is 5 and already eligible for kindergarten in our state and yet is admittedly very delayed in some areas ... does not qualify because he needs more time?

Honestly hasn't he had enough time. Being ignored. Being deprived. Fighting for himself. Fending for himself. Being lonely. Being overlooked and underestimated.

He doesn't need more time to show us all his inner will. He doesn't need more time to fall further behind his same-age peers. He doesn't need more time to get frustrated when other five-year-olds don't understand why he screams at them when they don't understand what he is saying. He doesn't need more time to wait for help because he doesn't fit into their mold of the *typical student.*

I didn't go it alone though. I called our State Education Departement. They were VERY HELPFUL. EXTREMELY HELPFUL. In fact, after my call into them amazingly I got a call back offering a FULL evaluation. Yet I had asked for this just days before with a firm no. Hmmm.

I also took a companion with me. Nothing like moral support when you are seated at a table with 10+ people, all of whom seem to be on a team against you at times. All of whom are professionals who assume you most certainly are not.

While The Prez would have tried to move mountains to get there, he honestly does not have the time to miss any more work and continue providing for his family. He is the boss and when he is out ... . He has missed so much work between Li'l Dude and Li'l Miss's surgeries, our trip to China, and doctor's appointments all around. The truth is I knew of another advocate who would be great to have by my side: my Mom and Li'l Dude's Grammy. I mention this to say KNOW YOUR RIGHTS and know that you can bring an advocate with you even if your spouse is not able to come or you are single or any other number of circumstance. Whatever you do though, don't go it alone in an IEP meeting.

Grammy has stayed by my side in both meetings, and she and Papa took care of the others while Li'l Dude and I went to the four different individual full evalutions for occupation and physical therapy, speech and language evaluation, and finally his psychological assessment. The two meetings had the same end goal. In one we pleaded our case and laid out our desires. And the one today, we mostly listened and they laid out the plan.

And a plan it is.

Li'l Dude will receive one-on-one speech services twice a week with a lady whose name is very uncommon but oh so special in our family. Some of you may be able to guess HER name. Not only that, she is genuinely delighted to help Li'l Dude move forward in his communication goals, and she just seemed so sweet and kind. She also has EXPERIENCE in helping cleft-affected children who lack expressive speech. Something that is crucial.

Li'l Dude will ALSO receive adaptive therapy because he does not adapt at an age-appropriate level at all. AND he will receive physical therapy for gross motor delays twice a month and maybe more. The physical therapist is also interested in helping him find his place and seems genuinely caring and concerned.

Developmental Delay (due to his adaptive and physical delays) and Speech Articulation Delay. That is the official code.

Official or not, we have all known it since the day we met him in China.

And yet, we ALL agreed today the scores he made on the tests are probably not accurate. But they are what they are. In *most* sublevels in the five main areas, his percentile rank looked something like this: <1. As in, less than the 1th percentile out of 100. Peers. The same age.

So it is with a mixture of sadness and joyfulness, I am actually relieved.

Relieved to know that I succeeded in getting our Li'l Dude the help he is due. Relieved in knowing he will receive these services FREE (we are currently paying $90 per hour for Li'l Miss to receive speech therapy). This is a blessing to receive the services free. A huge blessing.

Relieved to know when one fights back and pushes and lets others know I'm not just a bystander willing to take the pat answer ... things CAN happen.

I am in agreement that perhaps, if somehow he had not been in a poor Chinese orphanage for so many years ... perhaps we would not be where we are today. With a child who now has an IEP and who does have the *developmental delay* label.

I don't like labels either. But you know what? I also don't like knowing I've not done all I can to help him reach his potential, even if that means asking for help. Asking the hard questions. Looking at the hard facts. Accepting where he is today: delayed.

And yet relieved to know we all agree his potential is impossible to see because the sky truly does seem like the limit. One lady likened it to a baby bird who instead of being pushed out of its nest had somehow been trapped in the nest as it grew, unable to spread its wing and try them out, even if at times it fluttered clumsily to the ground. He instead of learning and growing, had been trapped in one spot for far too long, with so many inner longings trapped inside, lying dormant for far too long.

I have to imagine her illustration is not too far from accurate. Our Li'l Dude is so anxious to spread his wings. So willing to try. So amazing in how FAR he has come in a little less than four months home.

This is our first journey into an IEP. As our Li'l Dude settles in for the ride on the special little school bus that will come right to our house and pick him up and bring him home each of the four afternoons he attends, I will be settling in for the ride that is the life of a Mom whose child has an individualized education plan.


  1. Tho I have never adopted, my son had trouble in elementary school. I will never forget my 1st IEP meeting. DH couldn't come with me, and yes, it was me, and about 10 "professionals". By the time they got done...well, I had no words. They shoved this paper toward me on the table, and I shoved it right back. The PROFESSIONAL next to me, says to everyone at the table "it is quite apparent that Shelley doesn't agree with us". huh? you had to TELL them that? I struggled on with DS that year myself, and the next time we went in...I got what I wanted for DS. I found out that NO ONE will fight for your child unless YOU do. Kudos to you! You ROCK, Mom!!!!

  2. You DO rock! And I cannot wait to see how well your little man is going to do with such individualized and specialized help!

  3. IEP meetings are definitely not a walk in the park, to put it lightly. I am SO GLAD you had someone by your side throughout the process. You truly are your child's best advocate!

  4. I'm so glad you got the results you wanted. I have never adopted, but my son does have an IEP. He's been receiving speech therapy since they age of 2 (he is 4). I've only met with the speech therapist regarding the IEP. I can't imagine meeting with 10 people. I requested an OT evaluation for sensory issues and did get that, however they basically said he won't get services unless it's really affecting him at school. I'm still waiting. I'm working on getting an appointment with a Developmental Pediatrician, but it's $2000 for a 3 hour evaluation. I thank God for my parents who can help pay for it. My son has so many quirks and I just want an answer to what causes it and the speech delay. You are an inspiration.

  5. You go girl!!! I'm so proud of you for sticking up for your son and learning that you can fight back. Don't let them push you around. You should talk to Lil' Miss' teacher and see if she thinks she would qualify for services now. It helps to have more than the "doting parent" saying a child needs more help.

  6. Super job! I USED to be in the education business. I always thought of myself as the teacher that batted with the parents against the sometimes ridiculous red tape. It can sometimes be a long, slow process and that is not right. I agree with "mom2four" that having a teacher on your side can be helpful. The other thing to remember is that "qualifying" looks different as children age. From my experience, the gap of what is acceptable narrows as the child ages, thus, sometimes making it more likely that a child could qualify for services. Re-evaluating Lil' Miss may be in order. The worst is that the answer is still a no, but then at least you will know. The best is that your speech wishes come true! Your dedication, love, and hard work are growing some great kids!!

  7. It is so hard to learn to advocate for your child when you are struggling with your child's special needs, isn't it?
    We found ourselves buried by our daughter's needs and yet, had to fight to get her the services she needed... it's a VERY steep learning curve, and not for the faint of heart!!
    So wonderful to hear that you've done such an amazing job getting services for Lil' Dude!!
    Quite a victory!!

  8. You go Mama bear! So glad that you had the gumption to stick with your gut feeling and push for him to be evaluated. And now you will have 'professional' help in lovingly bringing lil' dude up to speed instead of a table of professionals making you feel stupid.
    I look forward to watching him learn to use those wings!

  9. I have always said God knew what He was doing when he made you their Mama!! You are an inspiration, friend!!

  10. I am just now catching up on my blog reading, and I am so encouraged by this, and so glad this boy now has a team of people fighting for him!