Back to Happy

Today is a good day. Melyssa continues to amaze me, she counted to 30 last night, and is making attempts at real reading! Dylan is silly as ever and is loving kindergarten. Meagan has just been notified that she will get to go on her class trip to Washington DC, and work is going well for both Bryan and I. Not feeling blue anymore.

Feeling Raw

I have just read through the latest posts and it appears that my thoughts are not very linear. I try to take one issue at a time, but then I get a bit tangled up and go off on a different tangent. I guess this is because there is no easy box to fit it all in. Today I am feeling very raw and sensitive. Some days are just harder than others.

'special needs'

Time to tackle language. Special Needs, differently abled, global delay, spectrum disorder, angels, retarded, chromosomes, genetic disorders, tactile defensive, sensory integration, hypotonia, apraxia, and on and on. It is a completely different world and very overwhelming. Admitting that your little one is not like most kids is hard, then comes getting the pediatrician to listen, then the avalanche of terms and doctors. I have found that there is no good term or phrase that I like for Melyssa. Special needs is too 'sweet'. Differently abled too politically correct. To start, I am offended by labels in general, so trying to label my own is hard. I hate the sites that refer to God not giving us more than we can handle, thus he chose the parents of HIS 'special angels'. Not being religious I can't really stomach this. I don't have a good term or word, but I guess I don't really need one.

Schools, IEPs and Assessments

When Melyssa was 3 her therapy ended with the Regional Center and was taken over by the Los Angeles Unified School District. We had to make some tough choices. I was very determined that she be in a main-stream class, though it became apparent immediately that this would not be to her benefit. I started visiting schools and classes, all the while interviewing at various jobs to re-enter the work force. It was very stressful. The first time I went to Lokrantz School I went home in tears. I could not imagine my child belonged there. The amount of equipment in the restrooms so that the kids could go to the bathroom was startling. The restraints on the chairs and desks to hold kids upright so they could do schoolwork was daunting. The kids were clearly very happpy and the teachers were amazing. We decided to give it a try. The first class Melyssa was in had twenty kids, most without any disablities or delays. She was completely overwhelmed and would latch on to me and cry every morning. I would leave in tears. After a week or so we decided to try a much smaller classroom, only five students all with some issues. Melyssa thrived. We met and loved Melyssa's teacher Priscilla. She really got us on the right path, and helped Melyssa to love school. Through all of this we learned the process of assesment and the language and format of an IEP (Individual Eduction Plan). We learned to fight for more therapy for our kiddo, or argue for goals to be included. We also learned how to digest words and language that was unpallatable. Words like retarded, disabled, and slow. These are just words. Still not easy, but just words. The people that matter know better.

(Not so) Baby-sitting

This past weekend the issue of finding a babysitter came up again. I know it is hard for all Parents to find a sitter that can be trusted with the most amazing people in your life (by this I mean your kids), when you have an almost seven year old that is not potty trained it becomes almost an impossible task. We lucked out this past weekend and found a great sitter that seems to understand. I have found that mature sitters (grown ups) are better for us than teens. I feel less stress and it makes for a better night out. Oh yeah, and the kids have more fun as well.

Melyssa has my heart

Just a thought for today. Bryan's grandparents and mom have come for a vist. I think often of how Bryan's Grandpa once descibed his feelings - he told me how much he loves his children, grandchildren and great-grandchildren, then he said, "but Melyssa has my heart". I use this memory often when describing Melyssa. There is something about her that just grabs you. She gravitated immediatlely to her great-grandpa this visit, something we don't often see. Often Melyssa is shy and overwhelmed when seeing someone she has not seen for some time. But she was flirting and laughing with her great-grandpa within minutes. It makes me smile.

two steps forward - one step back

All through Melyssa's progress milestones in one area have resulted in a step back in another area. For example, Melyssa used to have a problem with drooling. There were days and days when either we would keep her in bibs or her shirts would get soaked. Looking through pictures of her until she was almost five shows evidence of this problem. There were times she would be able to remain dry, but as soon as she started walking, the drooling was back, or she would master the ability to differentiate between two colors (by pointing) and her shirt would again get soaked. This would come under control again until the next milestone, then it would be back, usually to a slightly lesser degree. This was not just true of drooling, but in all areas of her development.

When Melyssa was roughly two we started in on some intense testing, MRI, EEG, all the blood work we could do, and the tests all proved normal. A normal diagnosis should be good news, but for a parent looking for answers it is just another dead end. Just this past year we got hope from a Pediatric Genetics Specialist that we would finally have some answers. He was pretty sure that Melyssa had Langer-Giedion Syndrome, a rare genetic disorder, the test results showed that this was not the case. We are pretty sure that Melyssa does have some type of chromosome or genetic disorder, but we might never know.

after eye surgery

About this time I became pregnant with Dylan. Dylan is probably the single best thing we could have given Melyssa. She loves her brother tremendously and has from the start. She used to rub his head every night to fall asleep, and they are very much best friends. THe more frustrated I got with our pediatricians the more I looked for other resources. Just before Dylan was born I took Melyssa to have her evaluated through the Los Angeles Regional Center. Melyssa was about 16 months at her first evaluation. It was determined that Melyssa had a Global Delay, Tactile Defensiveness, Sensory Integration issues, low muscle tone, but there was no true diagnosis. Autism was and continues to be the hot disability. All doctors are using it as a catch-all. Melyssa did not fall into this diagnosis, though we heard often that she 'presents similar characteristics and symptoms' as an autist. Once Dylan was born, we started on an amazing schedule of therapy, special Mommy-and-Me classes, and seeing Specialists. We had Speech Therapy, Occupational Therapy, Physical Therapy, and Floor Time once a week. We had a Mommy-and-Me class for kids with 'special needs' twice a week. We saw a Pediatric Neurologist once every two months. We continued to see the Optomotrist as well.

Through all of this we saw very slow, but steady progress.