Friday, May 22, 2009

Gavin's IEP

For those of you who do not know what an IEP is, it's an Individualized Education Program. Yearly, Gavin is assessed to see how far he has come in the last year and then we have a meeting with his physical therapist, a speech therapist, our city representative that is assigned to him, his teacher and a nurse. This meeting is usually dreaded for moms with children with special needs. It is kind of like conferences for our other children. We talk about how well he has done and then talk about goals that we have for him to set for the next year. We had this meeting on Wednesday. I didn't want to go, because it's a lot of paper work and also I get to hear and see just how far behind Gavin is.

I went into the meeting with little hope and actually came out with much hope! Like I've said before, we have been told not to expect much from Gavin. The stroke that he had affected his ENTIRE brain. Not all the cells were killed off, but every area of his brain was damaged. Some people have a stroke in one area of their brain and the rest of the brain can learn to do what the damaged area isn't able to do any longer. It takes time and relearning, but often times the person is able to progress with time. In Gavin's case, his WHOLE brain was damaged. This is why doctors are not hopeful that he will progress with healing and relearning of the brain. There is not a portion of Gavin's brain to take over for the part that was damaged, since it was ALL damaged.

Because of this fact, I have just accepted that this is the way Gavin is and that this is the way he will probably always be. It was difficult to accept, but I am a person that deals with reality and who does not hold out with false hope. It actually frustruates me when people say that "Gavin will get better, or Gavin will walk one day", etc. This is not likely, and I refuse to get my hopes up just to have them shot down again. I don't think of this as being pessimistic, just being real. These are the cards that Gavin has been dealt and we just need to play with what we have. (And, I happen to think that he is perfect just the way that he is!) Life may be more difficult with the way things are for Gavin and us, but life is a WHOLE LOT more full as well! He brings something to our life that no one else could. He is pure innocence and this is very liberating in this world that we live in.

Anyway, since I don't hold out for much, I was pleasantly surprised with the results of this meeting! At last years meeting, Gavin was determined to be at the 1-3 month level of a baby. I just rounded it up and considered him to be at about a 2 month old level. Keep in mind that he is over 2 1/2 years old. These were the results of this year's meeting: (Where they think that he is at developmentally now.)

Body Control and Movement: Birth - 7 months of age

Thinking, Learning and Playing: 4 months

Speech and Language: 3-6 months

Social and Emotional: 3-6 months

I was shocked to hear these results! I guess it pays to not have hope! I was pleasantly surprised instead of being heart broken! You may think that I'm crazy for being excited that my 2 1/2 year old is at an average of a 4 month old, but I'm happy! For a boy that was written off many times, he is doing great in my eyes! So, I will continue to work with Gavin, but I will still not get my hopes up for Gavin's future development. We'll see if I'm pleasantly surprised next year as well!

Great Job Buddy! Momma is SO proud!

I got to talk with Gavin's future teacher on Wednesday as well. She is TERRIFIC! I am still fearful of sending him to school on his own, but every time that I get to talk to her, my fears are lessened. She is SO excited to have him as her student and he responds really well with her. I know that I will still struggle with this decision, but I really believe that she and school will benefit him greatly! It's always harder on the mom than it is on the child anyway, right?! I'm still fearful of him catching illnesses, but she said that she discourages parents from sending their children when they are sick at all and she also wipes down the mats, toys, etc., twice a day with bleach water. So, he may even be safer in her environment than in my own!

So, hope is alive and well in mine and Gavin's world! The wonderful thing is, I know that it is always alive and well through God! This knowledge is what gets me through each and every day!

"And now, Lord, what do I wait for? My hope is in You." Psalm 39:7


Lacey said...

I struggled with sending Jax to preschool to, he is so little. Jax is doing home school for now, but I think Gavin will do great. He did have the same injury as Jax, Jax's whole brain is affected. Thats what happens with low glucose and high fevers, a lack of blood flow to the brain.

Michelle said...

Once again I say-get outta my head. I can so identify with your thoughts. I am so happy that your meeting was positive and gave you peace. Have a great day!!

Amy said...

This is FANTASTIC! Go Gavin, go! One step forward is still a step in the right direction! :o)

Hope said...

I agree with your decision to let him go to school. I think he may have a few more surprises for everyone! ((Hugs)) to you! You are a wonderful Momma! I dread IEP and IFSP time too.

Annette Gysen said...

I will pray for your peace of mind about sending Gavin to school. It will probably be good for both of you! It's hard to let go sometimes because you know you love your child better than anybody . . .

Alicia said...

Way to go Gavin!!

I totally understand why you are happy he is where he is! That is great! Some improvement is huge for him!

Thank you so much for all the prayers and encouragement you have given me. You are a wonderful Mama and I am honored to call you friend.

Have a great Memorial Day Weekend!

Cammie Heflin said...

I'm so glad that you have some joy!! Since I am the SLP for our Early Childhood Special Education, I'm not nervous about Addy's transition in the fall but I know so many parents are. I'm so thankful you have a good rapport with his teacher!

ANewKindOfPerfect said...

That is amazing! He has grown SO much. :) Their tiny little developmental steps are HUGE, aren't they!

In answer to what you posted on my blog, Peanut takes Neurontin for gut hypersensitivity. Basically anything going in her tummy hurts her. Anything moving through her intestines hurts her. This took us FOR-EVER to figure out, but once we did, woohoo! The Neurontin deadens nerve endings (same reason I'm taking it now!) and has helped immensly. We actually just tried a wean of it recently and it was a disaster. Increased retching, irritability, ickiness overall.

I hope that helps!

Anxious AF said...

I love those numbers, great advances buddy. You continue to amaze me:)

Inspired said...

Great Job Sweet Boy!!! That is such wonderful news. Keep up the good work (both mom & Gavin). School sounds scary and exciting (as Caleb put it so well). Its hard to let your kids go and especially hard when there are so many worries for Gavin's well being. I'm glad his teacher is terrific and he responds well to her.