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Saturday, April 5, 2008

Special Needs- Special Kids



In the past couple of years I have learned a ton about a disability called Sensory/Auditory Processing. Our daughter, Caroline, has struggled since she was very small with this disorder. Not long ago I wrote a post about how well she is doing now, but for any mom out there that might be second guessing herself.. I want to tell my story and hope that it will give you courage to fight should there be any inkling of a thought that something is going on with your child.

The funny thing is that I was a special ed. teacher before I had her and I was pretty aware (so I thought!) of disabilities that effect kids from a very young age. I mainly dealt with autism, learning disabilities and had some experience with spina bifida, behavior disorders, mental retardation and social/emotional disorders.

When our daughter walked late, seemed to startle easily, would spit up more than the average child and didn't have tantrums when it seemed that she should we began to think that something might be wrong. Then Caroline started hand flapping when she was excited or nervous. I immediately thought "That looks like a "self stemming" behavior of an autistic child!" People would say that she was just excited or that was "just Caroline" but in the back of my mind I just could not help but to think that something more might be going on.


When she entered 4 year preschool the teacher would meet me at the door almost every day explaining that she didn't follow directions, could not cut with scissors, didn't stay with the group and bounced in her chair. It seemed that she was smart enough and her language was developing, but she was still not doing what the others were doing. She also had frequent bathroom accidents and would try to hold BM's until she would eventually have an accident.


We decided to keep her back a year and we did T-K for 5 year olds. It was a hard decision, but her birthday is in the summer so we knew it would be well worth it! She could not swing or ride a bike and her handwriting was not coming along. She also still had the bouncing/flapping behaviors and in this small classroom of nine children it was getting worse! Especially the bouncing.

The teacher was the SWEETEST woman and loved Caroline dearly, but the classroom was not very structured and the children were free to move about while others were trying to work. It sent Caroline over the top! She could not handle the frequent movement of all of the kids, the unstructured classroom and the noise.


We also noticed that whenever Caroline would come into our bathroom after we had showered she would gag! She would also gag at dinner when she didn't like a particular food and it was hard to determine if she was just trying to get out of eating something new or if the food really made her sick!! She would also cram food into her mouth if it was something that she really liked. No matter how much I would ask her to take small bites she would still just cram food in.


Her doctor kept saying, "She is small. Just let her grow. She is just developing a little slower than others, but she IS growing and developing so just give her time." I knew that she was, in deed, developing and growing, but in my heart of hearts, my mommy heart, I also knew that something more was going on and I was not going to sit around and wait!


We had her tested academically first. She had average to below average intelligence based on the test, but much of the test went unanswered because Caroline would not answer! The lady that did the assessment did all kinds of tricks to try to get information out of Caroline, but to no avail. She recommended that we take her to a psychologist who did a battery of tests and at first wanted to say that we were dealing with Asperger's Syndrome. However, her language was very well developed and she did not show some signs of aspergers. She finally recommended Occupational Therapy for Sensory/Auditory Processing disorder.

IT is AMAZING! Come to find out...



The gagging- a result of certain smells that overwhelm the senses and can cause kids to feel that they will throw up. Grocery stores, bathrooms, kitchens, malls, stores... any place where smells can be strong can send these kids into sensory overload and cause nausea.
Now we know this and so does she so she just stays away while we are getting ready.


The cramming of food- she could not sense when her mouth was full. It was like she was trying to fill a void when eating.


The flapping and bouncing- a result of emotional overload or sensing too much activity. The flapping usually happens when she is excited or happy. The bouncing happens when she is around lots of kids and the energy from all of them just gets to her. She can't take it all in at once. She also bounces some when playing a computer game. The colors, sights, movement and her required response can sometimes overload her.

The lack of gross/fine motor skills- sometimes kids with Sensory Processing have a weak core. In our case Caroline compensates for her lack of balance in different ways. She puts her left arm out to balance herself is she is trying to write on a black board. She use to pull her big toes back to help herself balance when trying to sit. She can not cross her mid-line very well. (Opposite elbow to opposite knee, writing from right to left, hopping on one foot, etc. all require a strong core... who knew!?)

There have been so many amazing things that I have learned about Caroline and throughout this past year, through an understanding teacher and an incredible OT, she has gained so much! She is doing so well, but it is because we prayed and prayed that God would give us direction and help, and HE DID!

Now Caroline is helping a kid who is autistic with his own therapy! It is awesome to see her interact with kids with disabilities. She is not afraid to ask what's wrong, try to understand a little and then get on with PLAYING! She tries very hard to just play and treat everyone like they are "normal'. One mom told me that she is one of very few kids that seems to not care that her child has a problem. "She just talks to him," she said.

We still have a ways to go, and plenty to learn, but if you are a parent that needs help with finding testing facilities, information, therapy options, etc. Please feel free to leave me a comment and I will be happy to tell you what I know. It is our advocacy that will make a difference in the lives of our children and we have to share what we know! If you read this and know parents that are struggling PLEASE pass it on and let's start sharing! I need information and help with knowing what to do next and I am sure that there are others out there who need help too!





















8 comments:

Shakadal said...
This comment has been removed by a blog administrator.
Tracy Berta-daughter to the King, wife, mother, speaker, writer said...

Melissa, wow, what a journey. I have several friends who have children diagnosed with Asp. I have to wonder what is going on- food additives, environmental things, ????? What a wonderful mother you are- full of love and grace.

I am so excited about my new blog! Amy from InPursuitOfProverbs31 did an amazing job!!! I love it. Come on over and check it out when you get a minute.
Many blessings!

Love,
Tracy

Nicki said...

Thank you for sharing this story Melissa. It meant so much to be able to read about your journey so far! It's been a long trip I can see!!

You are truly putting the verse "And God works ALL things out for the good..." into play into your life!!

Faith said...

God is good! He has been faithful to you and Steve and to Caroline! She has come such a long way and I am so proud of her! Love her so much!

Melissa said...

The Lord has amazed me more and more every day with her! I can not tell you what the power of prayer and the fact that we are claiming scripture for her and in her life means to us! We KNOW that without the Lord we would never be where we are. He is SO faithful!Thank you for praying for us and for supporting us! We are believing God in our life and for YOURS! Love you!

joyfullness said...

Melissa, i am so encouraged by your journey with your SWEET CAROLINE! I have 2 boys..almost4 and 2 1/2...and both of them have several developmental delays... we are receiving much assistance and guidance..and in the knowing,i have been so overwhelmed with joy on all of the smallest milestones we have reached and are pressing on towards.....Everthing is a big deal for us... and i am so glad God picked me to be these boys mommy... and that HE has provided the ...well, everything we have needed.. i will be stopping by to see you often.. thankyou for the encouragement!! oh... came by way of nester... love birdies... your bathroom is too cute.. i love birdies.. but they have been hard for me to find.. where do you get so many???
Rowin' beside you..
Joyfullness

Kelly said...

I found your blog from "The Nester". I'm glad I did because I really got some insight into the developmental delays with your child. I have a 6 yr. old boy in kindergarten that is displaying many of the same traits that your child is. He is getting special ed at school and now being tested to see if he has autism. We probably won't know until the beginning of the school yr. next year. I was relieved to know I'm not the only mom dealing with this. It has been so hard. I bet my child will be diagnosed the same as your child. They are soooo similar!!! I'm relieved to know your child is doing better with therapy and that there is light at the end of the tunnel. I'll continue to check in on your blog to see how your child is progressing and hope that mine too will do the same. I guess patience really is a virtue!

Kelly

Melissa said...

Hi Kelly,
I would love to talk with you and help you in any way that I can! Would you be able to e-mail me? My e-mail is lineysmom@bellsouth.net and I would love to just talk with you about what is going on and who things are going. Thanks for stopping by and for leaving a sweet comment! I would love to know how things are working out for you and your sweet family!