Sensory

As I am learning about Autism and it's becoming more apparent to me of my daughters needs, my husband and I realized  this holiday season just how overwhelming it is for her. Don't get me wrong I always knew holidays were difficult for her no matter if it was Halloween with the costumes, or birthday's because of the people and noise. It's just that knowing and accepting is making us see it more clearly.   It felt like this Christmas she was at her peak with breakdowns. We would get over one tantrum and another one would start. I don't even think she knew why at times.  Christmas lights the night before Christmas Eve = people, crowds, noise, lights = overwhelming, Christmas Eve Party = Overwhelming, Christmas Day = More Stimulation..


Next Year I need too better prepare her. I need to give her a schedule with time limits on how long we will be at places. Headphones to deal with noise (these help her at theme parks), and help my other ones understand her. I am questioning if we will have a peaceful Christmas ever or will I dread the holidays for the rest of my life. I am still being yelled at this morning. I have learned to turn the volume up on the radio to drown out the crying, too literally shut off/ignore her verbally attacking me. At times I tell her to do what she wants and she still argues. Will she always be this way/


I asked K (6years old ) and J (10 years old) their perspective of Christmas Time.


J's perspective on S - "A lot of times at Christmas she doesn't like sharing her new toys.  It seems like sometimes that it's hard for her, the parties, having to play with others friends or family. I don't know why she cries. When she has her fits I don't understand why she needs to cry.  It's part of our life but it makes me feel upset."


K's perspective on S- " I think she cries because she doesn't like her presents. When she cries I think it's really hard for you to handle.  She's made different, I don't want a sister crying so much. I want to be able to play games with her. It's a happy time when we can play together. When she cries I pray, I prayed a lot during Christmas for a good Christmas. "


Next Year I am counting a little bit more peace.

A light shines

A couple of days ago, I sat down and thought "I'm going to writhe the raw truth about what I think at times".  I talk a lot about what is going on and it is the honest truth, I say I pray a lot which I do however, sometimes moments get so hard it's hard to find the light at the end of the tunnel. To be honest the last couple  of weeks/months have been  emotionally hard.  Come on!! I have a child with disabilities, one with ADHD, a super perfectionist and a TWEEN. It gets crazy and in those moments to be honest thoughts of running away and never coming back, crashing the car, to do anything but what I'm doing or feeling. In reality I can honestly say I would never do anything to take away from my kids, to hurt my children, I love and live for them. This is how I was feeling, when a teacher of my daughters came to me and told me that she supports my fight for my child and that her daughter has Aspergers and that she has had to go through the same struggles and how much our children our alike. Sometimes just hearing your not alone and that others have gone through this means so much. It really filled my hope and helped me to press on for our IEP and a OFFICIAL DIAGNOSIS.  I also may have scheduled someone like a therapist for myself to talk too.


With all that said we have had our FINAL IEP meeting this year.  The group of people that have came beside me through the Charter school have been honest and a blessing.  They did a full assessment on Salma and said that up front meeting her they never would have guessed what the tests would show.  My daughter has a five year old perspective of facial recognition, understanding of words and viewpoint. Meaning she doesn't get tone of voice, faces and only can view something one way if that is the way she first saw it as.  She's turning 10 in January... words are lost to express what is like to see that on paper even though you know what your gut has been telling you.


Her writing is also low, with a disability in sentence memory, this is tool that we all use when we sit in class and listen to teacher instruct us. She cannot retain information this way and will miss huge chunks of a general idea. This is why I repeat myself so often in the day and everything has to be taught in a manipulative or visual way.  There was so much more information that came to validate things that I already knew.  Her mobility is low for her age, meaning she can't comprehend certain muscle moments to copy a task or request.  To sum in all up I wasn't the only one thinking my daughter has a disability so did her teachers that see her twice a week. With everything the IEP was given to her based on Autism like qualities under Special Education.


Now I can take the psychologists report, the academic, the speech and language assessment and FINALLY get a full legit diagnosis. I'm not crazy!! I love my daughter and am blessed that the school will provide with the needed tools and weekly social group, a every other week in home tutor for writing , reading comprehension, phonics..  FIVE YEARS of fighting for people to see what I knew. Now seeing the exact age of level that my daughter is at.. What do I do with that? Hold strong, and have hope.


My goal for S to be INDEPENDENT to know how to do things on her own. Weather that is school work or just every day functioning without reminders. To learn to control herself so that I'm not carrying a nine year old girl with a tantrum to the car. 


Thank you for hanging in there with us.  I hope this is helpful and hopeful. Onto the diagnosis process now.

Here we go again

Sometimes in my head I have so much going on, it's a surprise that anything even gets done. When I sit down to write it all out. It's like an empty exhaustion hits me, it's not that I can't write it's the thought of all I want too say that makes me slump over and go void.

I'm going to say it once in this post and one time only than I'll share some things going on... I'M TIRED, EMOTIONALLY, PHYSICALLY and EVERYTHING IN BETWEEN!!!  We are going through a full assessment process right now for S. This is through the charter that I use to homeschool.  They offer services to children that need them. They seem like great services if she qualifies.  They will bring in an aide once a week to assist teaching her in areas that I can't because of her cognitive level.  She can go too social therapy with two other kids to work on those social rules that she doesn't understand and facial cues, vocal tones etc.. This last week alone we have had three assessments. One the week prior and the coming week is one more than two days of  (insert: long sigh....) IEP meetings.

With every other one they see something else than want to test on.

For parents that haven't gone through this process with their school it can be very tiring.  You of course have to fill out so much paperwork, it's the same idea of all the other paperwork you have probably done in the past.. a scale of where your kid is and questions about their life. Which, I honestly HATE doing. I feel like I'm putting her in a bubble and talking negative about her disabilities. I don't like to compare kid she is who she is. 

 Her first meeting was with a speech and language, the teacher said she scored very high in it. I had to explain that S can answer simple questions with language it's the usage of her words and misunderstanding of tones, expressions and words. You cannot have a legit conversation with her, it's a lot of yes, no's, smiles and simple sentences.  They added on: a facial testing and language usage test. This test was emotionally hard for me to sit through. She was suppose to look at a picture and say what she thinks the person is thinking, as if she was them. S couldn't think like that so she kept saying she or he and all of the answers were negative "They did something wrong.", "They made a mistake.", "They are mad." The one picture of one kid that obviously was mad and shouting STOP with his hand up in the stop position she said "He is saying he is five." The therapist tried to say I think he's saying STOP her S interrupted and said "No he's saying he's five, see his hand." Her usage of language and conversation scores were also low. 

The other tests I don't know how she did and won't know till Wednesday next week. One other test they want to add is OT for her sensory disorders. What sucks with all this is that I don't get her official diagnosis just her assessment for therapies and school needs. I still need to go back to CHILDREN"S HOSPITAL and do this all again for her OFFICIAL DIAGNOSIS.  As she is getting older it is without a doubt Aspergers/Austism.  Children's told us it would become more evident as she got older. It has my little ones are passing her in a lot of areas. They are learning to look out for her. That makes me sad.

I recently went to this amazing conference for parents with children with special needs.  It was such a blessing to see parents in the same situation of me.  All of our stories are different yet we all our struggling with the same thing - strength, questions of the future, daily life, advocating for our children, etc.. It helped me too see that I'm not alone with the child that wakes in the day and decides the mood of your household, just from their first hello. I'm not alone with having a child that doesn't understand certain day to day actions, words, needs tons of reminders, food diets, dealing with tantrums in social places and she is 91/2. Having to carry your child out of a store, and sometimes questioning "Is this is it, is this life?"  The things I gained was too see the encouragement directed back to the WORD/Bible that it's ok to question your purpose.  To see parents of older children that can find the humor in their day to day that is where I want to be.  Too laugh when S is quirky. 

Don't get me wrong I love my S with all my heart. In all honesty I pray all day because my strength is empty.  I am still working on acceptance. Where is that line that I accept it and she does these things because of her disability?  I'm worried that if I fully accept it I will stop fighting. I'm worried about the effects on the other kids, my marriage, and myself.  IT is my purpose!  It's Super Duper hard! I'm a therapist, dietician, friend, teacher and mother.