Sunday, June 1, 2014

A New Label for Kaelyn

Early this year Jon and I decided to have Kaelyn go through the IEP (Individualized Education Plan) process to see what the educational system could provide for our girl. The process itself was very long and involved. We spent hours upon hours at the school with various professionals testing Kaelyn. There was the vision teacher, orientation and mobility specialist, adaptive PE teacher, occupational therapist, physical therapist, resource teacher, speech therapist, and psychologist. Some of the testing was pretty much what I expected. Other days it was incredibly frustrating.

The final report was that Kaelyn is intellectual disabled (ID). ID is the new way of saying mentally retarded. Her IQ scores were very low. Much lower than I had anticipated. I believe that her scores will climb as she acquires more language, but I do not think she will ever lose the label of ID. The school recommends that she be put in full day special education. This was not a surprise. What was a surprise was that she would not get many outside services besides a one on one aide, some O&M services, and thirty minutes a week of speech consult with her teacher. Medical professionals outside of the school recommend occupational therapy and speech therapy. This is why we went to the school. Private OT and speech is expensive. More than we can do on a regular basis. I thought if we put her in school then all of that would be provided. 

In the end we declined the IEP with the school. We feel strongly about keeping her home where she continues to learn the security of being in a family. I can provide her everything she needs to grow and learn. I've been working on developing my own IEP for her for next school year. We are going to focus on language development, preschool skills, and music. I'm most excited about enrolling her in our homeschool choir. She loves to sing and I can already see her giant smile as she learns new songs. She will also continue gymnastics at Break the Barriers to strengthen her muscles and develop coordination.  Kaelyn and I will also volunteer once a week in my little girls' kindergarten class. This will give her even more of an opportunity to interact with typical developing children. 

God has given us so much peace about this decision. I know that He had us go through this IEP process with the school so that we would be confident in our decision to homeschool Kaelyn.

Our next step is to have her genetically tested to see if she has some type of syndrome. We will also have her tested again by a neuropsychologist this next year. We will continue to have her tested so that we may keep track of her progress. I'm positive that she will progress. Even though she will never be independent, she is such a joy to have in our lives!


  1. Well done Liz.... You are doing so much and even more for this precious little girl, thinking of your whole family.

  2. I think your confidence in your daughter, and willingness to work to help her reach her full potential (whatever that is for her) is the most important factor in her development and progress. My family adopted my disabled brother when he was 2 months old. So many people thought my parents were crazy, foolish even, to adopt a baby with so many needs, especially since they already had 7 kids. But, I know without a doubt, that it was part of God's plan for him (and us) for him to be a part of our family. At the time (1980), his diagnosis was "profound mental retardation". He has had lifelong seizures and is also legally blind (though he can see a little with one eye). My parents were told he would never walk, talk, dress or feed himself, etc. They said basically he would be a "vegetable" (their words). My mom had no idea what he would be capable of doing, but she was going to find out for herself, not just take their word for it and not try to teach him at all. They both worked so hard! I'm not going to lie, there was a lot of exhaustion and tears, for both of them, over the years. But, by the time he was 8 years old, he was doing all of the things they said he wouldn't, and was even potty trained. He needs assistance with shaving, bathing, etc. and will always need to be taken care of, but his life is so much better than it would have been had she given up on him before even trying. I am personally so grateful, not just because he is my brother and I love him, but because he has lived with us for the majority of the past 11 years. We would not have been able to do this if he didn't have these basic self-help skills. When our son was diagnosed with autism, we were told (not by everyone, but at least one of the psychiatrists involved in his evaluations/diagnosis) that it was just a matter of time before he would have to be put in a home and that we should start preparing mentally, emotionally and financially for that. It is too soon to say whether he will ever be able to live independently, but he is doing so well and is such a joy (we say he is the best medicine because he always makes everyone feel better!). I guess what I am saying is that, while it is important to get evaluations and diagnoses, to the extent that it is helpful. I think it is great that you guys are doing these things, considering that information, but doing what you feel is best, rather than basing your decisions solely on what others recommend. I admire all that you guys do as parents for ALL of your sweet children and know that they, and you, will be blessed for your efforts.