New Diagnosis...

There is so much to write , I am lazy that I just don't want to share. Positives that my family overall if I stood back I can say looks GREAT.  I started my own REIKI practice and that is fantastic and I am in the constant growth of self.

Of course as we know the more that we grow with ourselves the more that life gives us to understand. I always felt that unconditional love is something that every spirit, every person is striving to learn. However, I have always felt an extra pull in that direction. I knew at a young age that I wanted to work with disabled kids, I wanted to help them, help the world, adopt a child, live and fight for those with no voice... BIG dreams for a little KID. Of course this could say a lot about my childhood but we will leave that as is..

When things happen in life so fast you don't even have a moment to really think about it. Some things just feel right and you have to have FAITH too trust that and move with it.  I wouldn't change my life for anything no matter how hard it is.  I know that in the DIVINE plan of this world I was meant to be S's mom and my little man M's mom.

I wish I could sit down and write that S has been magnificent that she has grown in leaps and bounds.. that there is no problems except that of a typical 11 year old girl. I can say in positivity that she is attending a public school and with a lot of help has met all her IEP goals and is doing well!! So let's take a moment to say YEAH S!

Now... onto something new with all that has been going on and all the years of all sorts of Therapies.. Here is the list of that we have done and tried..

1. Trauma
2. Cognitive /Austism
3. Behavioral /Austism 
4. Alternative (Diets, natural medicine)
5. Doing Nothing
6. Homeschool
7. Speech
8. Regular Therapy

Her most recent Therapist of little over a year feels it's R.A.D (Reactive Attachment Disorder) - Reactive attachment disorder is a rare but serious condition in which an infant or young child doesn't establish healthy attachments with parents or caregivers. Reactive attachment disorder may develop if the child's basic needs for comfort, affection and nurturing aren't met and loving, caring, stable attachments with others are not established.

In other words this happened far before S was ever a part of my life. Well.. we saw someone new that works with R.A.D and other disorders. She feels it's a mood disorder that given the family history is genetic. Just as we inherit our color of eyes, hair we inherit Brain Cells that contain this.  We are not labeling as bi-polar or R.A.D but just a mood disorder. The doctor was very familiar with what we are dealing with; the constant fight for control. The violent outburst, the tantrums, unreasoning, no remorse, etc..  This does affect her cognitive, and her anxieties.  Without meds and once Estrogen kicks in, it will get worse.  Every time she is having a fit she is killing Brain cells due to her brain being trained to behave this way it literally cannot function any other way without help.  OK.. I don't want to talk about it anymore. With all that said we are trying meds... I am not excepting a miracle but am accepting help.

Unconditional Love is this ... I vow to you spirit to spirit that I will forever fight for you in this lifetime to release this. To get the help that you need in whatever shape or form that may be. I will always love you no matter how mad that you may get, no matter how hard you may push me or say you HATE me. That I will still stand by your side when you say "get away" or "your so mean". You are mine forever and it's ok to be different, it's ok to need help, it's ok to be you, it's ok to be mad, sad or glad. You have a right to your feelings, we just need to learn how to manage them.

I wish that I could take it all away for you. That there was a magic pill that forever would make it ok. That you would be "normal". That the past of this wouldn't be attached to you. But you are you and that is how you were made... YOU WILL become a successful adult, happy adult and loving adult. I will never stop. I love you .

My reasons..

I've been meaning to write this post for awhile, it's just been a matter of time.  I have thought about it in my head tons of times as well as talking to my husband about it...

A couple of weeks ago, I was out with some friends and we were discussing our children as mom's will do.  It somehow ended up on me and my four children.  They were talking about K being my favorite and she could do no wrong. I told them that they were wrong, that she does get in trouble for the way she speaks but at home.  The reason they brought this up was regarding S.  S is their joy, she can do no wrong in their eyes, the sweetest child, pure in all ways and doings.

I sat there and listened and tried too comment that they have No idea of my day to day. But instead of fighting, I sat back and took it.  See, what they see is my frustrations when S chooses certain things.  They see me talk stern too her, I never hit or yell at her but scold yes I do, usually though it takes a lot too get me there..

They don't see that, ALL DAY I have had patience with her. I have dealt with at least THREE tantrums that day that last an 1 hour too 3 hours, then the next one starts.  
They don't see me, homeschooling with Love and patience for my child who struggles with so many subjects.
They don't see me crying alone or too my husband in my room, and not the crying of little tears but the one that shakes your whole body.. 
They don't see the time that I spend reasoning with Love and patience too her for things such as why she has too take a shower out of routine, or put something away...
They don't watch me give her the Autism hold that I have to do sometimes too help her body relax..  
They don't feel the loss that I do, on not knowing what to do with my child, or what is best for my child, the feeling that everything you choose isn't the right choice but maybe it's better than the last.  
They don't know what it is like too NOT know How to TEACH, COMMUNICATE and PARENT your child... 
They may not know the feeling of TRULY living in FAITH everyday because you don't know anything and YOU REALIZE that you don't know anything - ALL THE TIME!!
They don't know what it's like daily too pour out unconditional love and a lot of times get nothing back..

  All they see is the smile on her face, the one she gives everyone even when she is confused, lost or scared. At home Mom and Dad handle the anxiety, the confused child, the scared child...

I do have too say I am blessed that S can communicate, laugh, talk, cry, and at times tries too joke around..  I know things could be worse - A lot WORSE.  I just want people too sometimes have a clue on the REAL DEAL, the one that I don't share all the time, the one that they don't see.. Don't judge me, because I don't share all my details... you think you know but no you Don't not really and HONESTLY I don't know if I want you too. I don't want that pity look, or thinking I'm asking for the pity look.

STUCK : Documentary

I normally don't write about movies that I watch or documentaries.  This one though hit me a little hard.  The name of the documentary is called STUCK by Thaddaeus Scheel.  The movie follows three families around the world as they are trying to adopt from different countries.  It discusses and shows their journey over years as they wait to bring their child or children home.  It really makes you think about how much adoption is needed, how many kids are out there in this world just STUCK.   Even here in the United States of America, children are better off because we have foster care and not institutions. However, I know we can go into this discussion all on it's own but my point is that that these other children live in filth, no education, no food, cramped, poverty.  

The main thing that really gets me isn't just the fact that their own government is now making it hard for us to adopt these children but the financial cost of adoption.  This doesn't just involve adopting children from out of country but also here in America.  As many as you know we choose to adopt two wonderful children and the amount of money that we had to pay agency costs, government fees, lawyer fees, court fees, application fees, etc..!  For the common middle class family adoption is almost not even an option unless you can figure a way to raise money.  We were blessed with donations after I sent a letter sharing our story.   It took us here in America three years to officially call our children ours, we were blessed that they lived in our house whereas people adopting out of country don't have that.  

What I am asking you to do is just to educate yourself on how hard it is too adopt.  Learn about the United States costs and you won't see that much difference to out of country.  It's really sad,  I am hoping the more people that educate themselves the more awareness it brings.

Check out the trailer for STUCK if you have netflix it's free to stream.



Another Great website that I ran into supporting adoption and those families that can't always afford the costs is LivandHope.  I have purchased a couple of their shirts read their about us story.   This family created a t shirt line to help support their funding.
Livandhope

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.  

Not for the faint of heart

Being a mother of two children with some kind of disabilities is not for the faint of heart.  There is an emptiness, a feeling of feeling lost, blank that you can't quite explain.  You are doing your best for your child because you have a unconditional love that really only can come from GOD.  I do believe that anyone that has child with disabilities believes in GOD somehow.  You have to find something to draw your strength from because your own strength runs out fast!!!

I have been through so much with my S! I am learning everyday and can never read enough books on Aspergers.  The one thing though that I never find though is that book that explains too you how you feel as a parent with a child with Autism, Aspergers, ADHD, whatever it may be.  There isn't a book that says "We get it.." , "When you feel lost.., which will be most of the time." "How to live on the verge of screaming, crying and rejoicing daily.."

It's not so much S, now. I homeschool her and now it's about me dealing with Asperger's in your FACE on a day to day basis with no breaks.  What's really going on is M.  I am reading books about ADHD/ODD now and trying to figure out where does it start and where does it end.  Can you really point that out? Or, is that even fair to point out?

I'm lost.... It hurts, honestly there is just this crazy emptiness and lost feeling that you keep thinking and praying "What do I do?"  "How do I do this?"  My house feels at times like a roller-coaster... you never know which kid is going to give you which attitude. One minute S is fine and the next she's yelling at someone for touching something.  One minute M is fine the next he's bouncing of the walls or hitting someone for looking at him.  I don't know at times with him what is the truth or a lie, and he's only 7.  How many more day's will I be able too carry him into the car?  Or make him brush his teeth, and take his medication?

I know as parents we are not alone but as a parent with multiple disabilities under her roof, I wish there was a how-to book.  How to parent a child with disabilities... How to understand your own feelings in all this.. How to cope day to day.. When you want to give up, don't.... Is there light at the end of the tunnel?  What about my other children and my marriage I need to focus on?  How much is over protecting them and letting them learn?  When do I stop making excuses for them?   Will I go crazy over time?  Maybe I already have..

I have this really great book idea for parents of a child with special needs, it would be collection of essay's or short stories from different mother's perspectives on how they cope. (Send me message if interested)

One thing I have learned is the meaning of unconditional love, that is something that is unexplianable. If you are a parent of a child with special needs then you get this.