My special girl

My Lydia has always been my special girl. Her nickname is "Dia" which means the light in hindi. And she so is. I've always admired her independence and self-confidence. She is so strong, bright, caring, and funny. I've definately always thought she was "special". Well today we found out that she is extraordinarily special. My baby has autism. The evaluator that came today has been researching, studying and working with autism for over 20 years. She was very informative and really brought Lydia's truth to light. Her autism effects her social, problem solving, and verbal skills. They talked a lot today about Lydia's world and how it takes a lot to enter it. I have always tried to force my way in, trying to play with her, talk to her, read to her, snuggle her. But it's usually a rarity and always on her terms. I think what breaks my heart the most that as her mother I want to be completely infiltrated in her world, but she doesn't know how to let me in. And also she can't tell me what she needs or wants. She can't really verbalize it and she doesn't know how to gesture for it. Her autism affects her problem solving skills to the point where she doesn't know to reach out to me for help, she feels the need to figure everything out on her own. So she grows frustrated very easily when she can't. Lydia also is hesitant to associate with anyone she can't "figure out". That is why Lucy is pretty much a ghost to her and she wants nothing to do with animals. For her they are all too unpredictable.



I was offered two different programs for her. An autism based program and developmental delay program. The evaluator said most parents who find out their toddlers have autism, they choose the developmental delay program because it is more vague and some of the parents just arn't ready to accept the diagnosis and don't want to deal with it at such a young age. So they'd rather their child be in the delay program and revisit the autism diagnosis after a few years of being worked with in all areas. The autism program is more focused on specific areas of delay due to autsim specifically. And when she is 3 after a year of one-on-one therapies she'd go to a special needs preschool program. So after being told the pros and cons of both, I decided on the autism program. I figure I can't just go about pretending that this isn't part of her. So I am embracing this head on and I want it handled immediately. I figure much like my illness early detection and treatment could only be the most beneficial. Not to mention, I am very much about raising little individuals. There is no "norm" for how I want my girls raised. I want to embrace and support all aspects of them while offering moral guidelines and values. So I choose to love her because of this and not in-spite of this. Autism is a hard pill to swallow but this is part of who she is, and that's okay. I am sure that she will overcome the hardships associated with it and become the bright, creative, expressive child that I know and love. Her differences will enhance her life not hinder it. I will keep everyone updated as therapies progress. And I do believe in trusting this program and I believe that they have her best interests at heart. I am not much one to go with eastern medicine, I am an "all american" type and trust in her doctors and therapists. I know some people feel differently and that's okay. But I am hoping people let me do what I feel is best for my daughter, I am her mother and I will follow my instincts. It's been a long stressful week with Lydia's diagnosis and mine as well. I need to just stay focused on her development and not get too stressed out. Because if I get increasingly worse what good am I gonna be to my girls?



So as I mentioned a bit ago Dr. Hess met with me this week to go over my test results and went over my treatment plans. He is going to move forward with treating me for a severe case of Fibro and RSD. Right now he adjusted my meds again and we are going to see how I respond to these. He also said what I do at home is just as important as the meds. So I need to rest as much as possible and try to find comfort as much as possible, but I need to still be moving. And that's why he wan'ts me to find comfort as much as possible. I have been spending a lot of time in bed when I am not taking care of the girls. I need to find some relief. I can no longer go to water therapy because I don't have a ride. (I still can't drive obviously). The other very imperative thing to my treatment is my stress levels. RSd is so exacerbated by stress and emotions that I need to constantly keep things in check. And I am a worry wart by nature and Dr. hess said I am naturally going to be in a lot of physical stress just due to high pain levels and being so sick. So I need to try not to add to it. Even if I start crying a little bit, the pain is instantly heightened, which usually makes me want to cry more. So I need to keep all of these things in mind as I go about life as usual.

So bottom line is we still need prayers and continued support. And I want to thank all of you that have been so wonderful during this difficult time. It's nice to know that there are some people out there that just have your back no matter what during a time where insecurity breeds second guessing and constant stress. So, I hope everyone is doing well and keeping warm. Much love and soft hugs!!!

Chrissie

When it rains, it pours!

Well I know it has been a long time since I have updated everyone on life in the Patel household and how things are going with my illness. I do apologize, but we've been a bit insane around here. My symptoms are still progressing and changing and the pain does continue to get worse, but I am settling in to my "new" existence. I think the shock factor of how bad I felt has now regressed to the point of eery comfortablility. Our life is starting to resemble the olden days in the fact that I am back to taking care of the kids 4 days a week, which I love. It is extremely painful, but I feel that no matter what I do I will hurt so I might as well reconvene with life. I do have help 2 days a week because my cousin comes over while Chintan is at work and for the full shift too! Plus Chintan is home on Sundays, so we have our family day then. I realize that doing this against the doctors orders could very well put me and my fusion at risk, but I feel the benefits outweigh the risks. With pain disorders in general most people lose a lot of mobility, and I have, but if I stay moving while taking care of the kids it puts off my potential future living on four wheels.
So because of my little sabbatical from mommyhood, I was worried that Lydia was a bit behind developmentally. So a friend of mine mentioned having her evaluated by my county's department of education. They came out and did an assessment and determined that in most areas she's right on track, some areas she's ahead for her age, and unfortunately she is a little behind in a couple areas as well. They said that she scored very well during the assessment so that they didn't need to do a formal evaluation, but if I requested one that they would do it. Man, am I glad that I did it! They came today for day 1 of the evaluation to assess her motor, emotional, and social skills. Well they told me that Lydia presented a lot of red flags for autism. I was so broken hearted and instantly thought it was my fault, that if I hadn't gotten sick and was able to focus a lot of attention on her that she wouldn't have these problems. I started to cry and they assured me that autism is in the brain and it's something she's born with. But I swear when you become a mother you carry a lifetime pass to the guilt club. I am so bogged down with worry and fear that my illness has had a terrible impact on my children.
One of my house rules is that there is to be no anger, yelling, or cussing around the kids and as far as my depression and anxiety go I do my very best not to let the kids see it or feel it. I put on my "happy face" for the girls at all times and expect family to do the same. Chintan and I met with Dr. Toll (pain psychologist) and we discussed the kids at length along with a lot of our major stressers right now besides the obvious. It's all mainly financial and lack of sleep. But Dr. Toll was very proud of us for always putting the kids and their well-being first and foremost in our lives and for our positive, spiritual outlook. Although he reassured me that I was doing everything I still worry that it's not enough. On the days people are here to help, I try my best just to focus on me and resting and doing what I need to to feel good in those moments because it's not possible when I'm alone. But then I wonder if I'm being selfish.
Well now with the possibility of autism looming I really need to keep up the good work to continue with Lydia's positive advancement. I swear the girl is a little sponge right now and it makes everyday a new adventure. What is she going to learn? What words is she going to say?
I am sure much like when I was ill as a family we will all pull together and try to stay positive and live in the "now". Lydia is my whole family's "little angel". She's completely latched on to my mom, completely smitten with my brother in law, and really starting to attach to my sister.
She's having a blast getting to know my cousin that comes to take care of us and is starting to open up to her as well. I know our little "villiage" will come together for the spirit of this little girl and she will be the better for it. She is such a strong and bright girl and I know that she will be fine. Her and I are very similar people and we both are very strong-willed and stubborn. I know I don't except limitations at face value and I can tell she is the same way. So please pray for my little girl that she doesn't have autism and that there are just some areas we have to be more productive with.
I go see Dr. Hess (my pain specialist) on Thursday to go over all of my 13 test results! Yes the rheumotologist tested me for that many!! Her thoughts on everything is that it's either RSD or Lupus as well as a severe case of Fibromyalgia. Dr. Toll gave me a list of things to talk to him about that are in his eyes the symptoms of most importance. Those things are lack of sleep (I get approximately 2 or 3 hours a night), restless legs syndrome, pain levels, swelling in my joints and legs, and continuous weight loss. I lost another 10 lbs in 2 weeks, so under normal circumstances, I'd be like "yeah"!!!! Another 50 lbs or so until my goal weight, lol!! No not that much, at that point I'd be a rail, and I like having a bit of junk in my trunk. Or in my case a little jelly in my roll :) I don't get to go see the psychiatrist until June and he's the one who needs to put me on anti-depressants. I am looking forward to see if those help calm down my worries and stress. I know that there are some that say I think about my illness too much and over-analyze and guess-timate the future. But I really think that that is a normal reaction to being sick and in pain and definitely not in "the know". I feel like sometimes because I am so sick sometimes my feelings and thoughts get put on the back burner because it's all just too much. And at that point all I feel is rejection. Being made to feel like a first class reject on top of everything else going on inside my head is just not working for me right now, lol. Obviously, right? So here I go, I am going to keep trekking on in this very important and hopefully informative week. Prayers needed for all of us, please. We all need the strength to get through this exceedingly stressful time. I hope this blog finds you all well. I will try my best to write more often especially with all of the new possible developments to come!!

Hugs and Kisses,
Chrissie :)