I still love the Young Woman in my Church talking about babysitting Lillian. She is the easiest child to babysit because she is so accustom to communicating non-verbally she never gets upset like other toddlers when you don't understand what she wants at first. Lillian would literally have babysitters hold her up to the cupboard so she could show them the exact box of crackers she desired. Even to this day she is constantly having to repeat herself multiple times to me. You want your shoes?goons? ohhh balloons.
The sensory processing disorder hit me hard. I cried. A lot. Part of it was relief. Oh that's why Lillian freaks out when her cloths get the smallest amount of wet. Now, I know why she won't wear jeans or certain shoes. It just bugs her past the point that she her little nervous system can handle. Also that's why she randomly will push child over or pull their hair which is so hard to understand how she can go from being so fine to so hot in a second. She is over responding or other times under responsive when she crawls in a ball and rocks back and forth in some situations.
Many DHH (deaf and hard of hearing) people suffer from having their senses unbalanced. If I just think about it from a purely the five senses point of view... Lillian used 4 senses to explore her world her first two years nine months of life. Her body had her moving very fast looking every way not to miss anything. She observed, tasted, felt, and smelled her way around. As a baby that seems normal not as a four year old, But her body still wants to do those things. Observe, move around so fast to see everything and not miss a thing- really hard when we need you to sit at the table and do a worksheet. Taste- Lillian always has put everything in her mouth, normal at 1-2 years not so normal a 4.4 years. Now she has chew toys to help her with her oral biting needs. Touch- I watch Lillian walk down the hall she has her hand on the wall feeling the bumpy texture as she moves from room to room exploring her world by touching the walls, floors, people etc. Smell. She often is the first one to tell me Jackson has a dirty diaper. funny super noes girl.
http://www.spdfoundation.net/
We started up Occupation Therapy the next month after receiving this suggestion and I had so many questions. Heaving lifting calms Lillian. She loves to spin and her body craves it. She doesn't get dizzy. Is it because the inner ear hairs are damaged and thus don't fell the movement of the fluid in her ears to resistor that movement? I still don't know how to exactly help Lillian. Its like tight rope walking in high heels, impossible. I am more patient and take time to prepare her for situations that will be difficult. We leave for things 15 minute early just to help her transition. Sometimes I know I am spoiling her too much, but she also knows the word NO and has heard it a lot the past few months.
Her behavior spiked at an all time horrible these past few weeks. It's hard to see her so upset and not understanding. They have the behavior specialist working with her at school and I have become consistent with timeouts at home. She has a safe zone in her room she can run to if she gets too upset. We talk about getting into trouble big trouble hurting someone, or little trouble not picking something up or being rude. Three new students have joined Lillian's preschool this past month, she has had a hard time with that change. I formally requested she be evaluated for sensory issues in October 2013. The school district took the full 90 days they legally have to evaluate her, I called called and called. The OT did not have the report finished at the IEP (individualized education plan- for kids with special needs) meeting. While she really seems to know what she is doing, I was frustrated. After calling an additional IEP meeting and discussing what is going on with our home district who really really has their acts together. We all meet and agreed on what services she needs. Sorry to vent. She is doing so much better at school. I see her struggle in everyday activities and I just wish it could have been me not her to have these trials. Having said that. I am a teacher, I went to IEP meetings before for other children. I have a great ability to know what will help Lillian and what will distract her further. I just need more hours in the day and extra hands. Maybe I can become a sleepless octopus?
The things we do at home are so simple and fun. Therapy is play and not difficult. The activities really can involve all my kids (Elliott still doesn't like to get hand messy though) It's making me a more fun mother, thinking outside the box.
Our Church had a woman's conference last weekend. Last minute Steven, encouraged me to go and I did. I got several points out of it, but the main one was that I cannot compare, myself or Lillian to others. It's just not healthy and won't help anything. We all have our own strengths and weaknesses (oreos!!!) Also God knows us and loves us so he prepared us for our challenges on this earth.
Most of Lillian story I post on my other blog, but I felt I needed to post it here also! Parenthood has brought me the greatest joys and happiness I have ever known, but I have never ever worked so hard in my life. I have had flaws exposed I didn't even thing I had. It's worth it though. Investing my time in my kids is a blessing I see now and will see in years to come.
Hugs!
Amanda
