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.

Summer in full force

We are fully into our summer vacation for the last three weeks, we are on a year around schedule which gives us only three more weeks to go.   Time is going by super fast.  Unfortunately, this summer all my energy and goals of fitness have been sucked by a horrible virus that is playing tricks on me.  It likes to make me think I'm getting better then come back full force the next day.

The one thing that sucks about year around schedule is that it takes about a month to adjust especially for S.  We are family of four children, and having all four children around 24/7 tends to overwhelm her.  We try to do our best with keeping the kids busy but again I don't know sometimes if that is best.

The school year has been completed and now we are getting ready to move into the next.  So here is what I have learned and what we have decided for next year.  When I signed up to homeschool S I thought that I would just do it for  a semester and focus to get her ready to go back to school next year. However, I have learned that one of the main reason for all her tantrums was her anxiety due to the stress of school (fitting in, kids, noises, learning, etc..) She does seem happier and more engaged, she wants to talk which was hard for her to do a lot of before.   She learns differently than other people and that is ok. She loves history and soaks it in, she learns most things by making them hands on activities.  She likes the schedule and one on one that she gets with me.  I have found that she was at a second grade learning level.  We just are moving into third grade math. She is moving into the fourth grade but for the two days a week that she goes to school we decided to keep her with the third grade group the fourth grade group was 4th-6th which my husband and I feel is too much for her.

In all honestly having S with me 24/7 has thrown Aspergers in my face.  I am learning to truly embrace my child for who they are and all their weird quirks.  It is hard though... I know I must not be the only one that thinks this.  The questions that I face 24/7 are toddler like questions at times because everything is so literal.  The noises.., gestures,... etc.. at times are hard for me. She is becoming more of who she is and is learning to embrace herself.  This is the most important thing, is for her to be proud of being her.  SUPER COOL POINTS: She just performed her first piano recital in front of a huge group of people, she did great. SO PROUD!!!

I quit my job too have a breather when she goes to school 2 days a week. I tend to be overwhelmed at times with the feeling of loneliness that no one understands my life; but to be completely honest, I don't know if I want them too either.  She is who she is and I don't want them to have different viewpoint either.

Let's move on with M.  M is M.. after his diagnosis of ADHD and ODD we have been attending therapy every two weeks. I don't think enough, and I don't quite know how's it's helping either.  I am doing a lot of reading to learn about ADHD and it's quite interesting to learn about.  Everyday is a battle though. I just try to talk and instruct but he acts like a baby and immediately goes into a fit.  Yells when his brother tries to play with him, yells when he doesn't get his way, cries and throws things.  The medication is helping some what but, we may need to up the dosage. It helps him to calm down some of his hyperactivity however, there are other things like the anger that is hard to control.  The anger I believe is more part of the ODD when asked last night by dad "Why do you get so mad when mom just talks to you?"  His answer: "Because I don't like what to do be told what to do."  What am I suppose to do with that?  I handle him and discipline because your diagnosis is not an excuse and I continue to try to guide him after.

With the life that God choose for me, I have to remind myself that this is what I have been chosen to do.  My house is a little messier than what I would like it too be, however my sanity is more important.  I need to take the moments of calmness and soak it up.  I started crocheting again and am currently reading a book on ASPERGERS, another on ADHD and the second Game of Thrones book.

I love reading other blogs about other moms that deal with the same thing.. get gives me hope.  I just watched the movie Temple Gradin (FINALLY saw it!) I was crying the whole time not for Temple though but for the mom.  The fight that she gave was so encouraging...

Patience equals Results

My rollercoaster of a life feels like it's settling down a little. (knock on wood).  I got the results back for M and he was diagnosed with ADHD (Attention Deficit Hyperactivity disorder) and ODD (Oppositional Defiant Disorder).  As my sister says he has every letter of the alphabet, ha ha..  We have started to take Adderall.  I did a lot of reading up on this, and had a long discussion, many discussions with the hubby.  I believe that we made the right choice.  The first day on medication he got his first excellent day of the school year and since then many good days. NO bad days at school.  His teacher who was not on board at first has even commented that he is doing so well and sees a huge difference in his focus.

I do have to remind myself that this is not a miracle cure.  He still is going  to be attending behavioral therapy and even though he is on medication he does have bad days sometimes.  We have been blessed however that he is not having any side effects.

I have to be honest and say that understanding what was and is going on with M has been difficult.  I don't regret the choice that I made of adopting my babies, I know that they are a blessing to me and I couldn't imagine life without them.  It wasn't anger that I felt when I realized that M needed help, I best can describe it as fustration. Frustration that I have one with Aspergers and another with ADHD. I wanted to yell at the Lord "ANYTHING ELSE!" I may have actually yelled that. I cried out of fustration. However, we are working through it.

With all that is going on with M and homeschooling S this year, I decided to stop working part-time. I was only working two days a week to keep some of my own idenity. I loved teaching, and to be honest I'm really good at it.  Homeschooling a child and one that questions the whole world constantly is like having a toddler 24/7 with you.  I need to try to take the two days that she goes to school and breathe a little.  

The funny part is that since I love CHAOS though I decided to take on the position of PTC president.  I was nominated without really asking to be, and decided to accept.  Parents that have a little more in their life than others are just made differently I guess.

I felt very much in my bubble lately with everything and was struggling to see God's presence in all this.   Sadly an old friend of mine suffered a loss and it helped me to see God in so many ways than what I was viewing him as.  If you have a chance check out their story.



Life is all over the place.  It's hard to see the light sometimes, we just need to hold on a little longer.

Jumped to Conclusions

Yesterday's doctor appointment did not go as I imagined in my head. First off, the teacher did not complete or give me any documentation.  Apparently, she just sent the email to the principal the night before. She was thinking she needed approval to RE-SEND me emails, and notes of behavior.  So.... then when I went to the Dr.  I was that parent, the one that is just requesting medication with no proof other than just my word.

I love my doctor because he is so old school. We have HMO yet he will call to make sure the kids are ok, or always try to take us even if he can't.  I had a feeling going to see him could result with his uneasiness in my request for my child to be evaluated for ADHD.  I began listing all the reasons, and ways its effecting his school, sports, and home life.  I also told him about the threats of harming himself that he is saying, the loss of his self-confidence.

His main question was how is his school work? Is he completing and maintaining? I told him that my child is very intelligent, it's not a matter of him falling behind in grades, he keeps up. However, he is bored in class. Yells out answers, after time after time reminding, easily frustrated, shuts down and refuses to do work, losing friends, and now is speaking to the school psychologist.  His response.... I don't think your child has ADHD, he's really smart.  I think your child is D-E-P-R-E-S-S-E-D.  My respnose: What does my child have to be depressed about? A lot of kids with ADHD are really smart!  Apparently the pursuit of happiness, was his reason for depression, the doctor said.  I wanted to cry he said we need to see a psychologist or psychiatrist.  SERIOUSLY?! So in the meantime when he  is jumping out of moving vehicles, hitting, and threating. I'm suppose to do what??

I met with the principal and explained to her that I gave the teacher a week to provide documentation to help me assist my child.  That since I had no proof, my doctor had nothing to really go off of.  We are having a full meeting next week. I had asked her previously to challenge my child and she told me to buy the higher grade textbook and I do it. I do challenge at home... So fustrated and lost.

I do think my child still has ADHD, I was ok with medicating for ADHD if needed.  However, I don't feel that ok with medicating for Depression.  I don't think my kid is depressed.  He is so remorseful after his fits, he can't control his anger. He's not mopping around.... For once, I don't know what to do.. Do I see another doctor?