The honest truth of my daily life, the comical, the crazy, the tears and the prayers
Friday, December 26, 2014
Sensory
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.
Thursday, December 18, 2014
A light shines
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.
Saturday, December 6, 2014
Here we go again
Thursday, August 21, 2014
Not for the faint of heart
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.
Monday, June 30, 2014
Summer in full force
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...
Monday, June 2, 2014
Patience equals Results
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.
Friday, April 18, 2014
Jumped to Conclusions
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?
Wednesday, April 16, 2014
A new journey
A quick note, I fell off the meditation wagon for awhile but, this new 21-day meditation with Deepak Chopra and Oprah (yes, I said OPRAH) has really been helpful. It's about finding your flow. Today's focus was on your strength within.
I debated to write this post but, it has been crazy lately and this is my out. So much is going through my mind for the last week or so. Let's just start writing and let it flow... M (this is S's biological brother) has been my baby since he was 2. He is all boy, he started talking a little late but other than that has been on track developmentally. He is so smart, so smart. Super athletic and very loving. He is again, just all boy. He can't sit on my couch, because he doesn't stay still. Is always, I mean always hungry, very stubborn, very funny too, and will always do that one thing just because he wants too know what will happen. He is my baby boy, and I love him so much. The teachers always speak volumes about how smart he is. However, lately things have been changing just this last year. Pick up time usually involves a conference of some kind with his teacher.
The stubbornness has grown, talking back more, anger issues have become more so (we went to counseling before), started seeing the school psychologist, sportsmanship he's just not focused, refuses to do work in class, disciplining (time-outs, grounding, etc...) don't seem to work. Just yesterday I had to carry him to my car to go to school and leave him in the office because he wouldn't put his shoes on. Some how in the morning he wasn't getting his way, so he just shut down.
I know kids act up but this is something more. This kid has had anger management classes, I have taken away all sugar and gluten-free, the tools for him to use have been given to him, he is really smart so it shouldn't be a problem. It is though.... it's not working, nothing is and I feel that I am losing my sweet, athletic loving boy. He's making threats on hurting himself physically, running away, hating himself. His self-confidence from a SUPER CONFIDENT boy is disappearing. When he acts up I'm not even yelling just saying how much I love him. Yet, he still continues on too try to stir me up. It's not working though... With all that summary we have decided to have him tested for ADHD (attention deficit hyperactive disorder).
Now Aspergers, I have covered. S is doing great ( knock on wood)... homeschooling and diet changes she is excelling. Then life decided too hand me a new one. ADHD, what the #$&^&*^ is this? I have done my research and am an educator. I am familiar with working (at work) with children like this. However, now at home it's created a whole another environment. I'm not mad, I"m just confused. I am thinking SERIOUSLY!! Aspergers and ADHD!!! It's enough being one type of therapist 24 hours a day and now I need to learn and become a different one.
I have given up college, stopped working five days a week. I lvoe being a mom and wouldn't change my life for anything. My soul purpose in this world is my children. I never regret adopting S and M, never the LOVE that I have for them is the same that I have for my other biological children. Unless you have adopted you quite can't explain this.
I havent given into my bubble, I have been trying to wrap my head around this. I honestly don't know what too feel. I have to admit though that for some strange reason this is harder for me to accept then S's Aspergers. I think it's the connotation that ADHD has. I won't be shouting this from the roof tops or telling all the family (unless they read this). I will be taking one step at time.
It's heart wrenching to hear your child yell ways to hurt himself. To beg to end it all... I have read that this is a sign and that things will be get better. My baby is only seven and has the whole future ahead to have all his dream come true. We will make it over this mountain.
If you have read this and are a friend or family member, please don't pity party me. Just understand if I'm not quite focused on general life, I'm trying to get through ours with all the LOVE, PATIENCE and UNDERSTANDING that I can have.
Tuesday, April 15, 2014
Nutrition
I've been meaning to write this post for about a month but, I wasn't sure where what I felt about it. About a month ago, I took S to the Center for Advanced Medicine, in Encinitas. They did a test on her to find out what she was allergic too. I believe the test was called a NAET test, it is based on energy levels. I know it sounds sort of out there. I had told them about S having Aspergers and they said that they were familiar with the diet that she should need, however they were going to run the test to see if she was allergic to anything. The reason that I took her was because we have been suffering digestion issues and bathroom issues for a long, I mean a long time. I took her to our regular doctor who gave us a laxative, and Miralax however, this did not help.
I had read that children with Aspergers tend to have digestion issues and allergic to Gluten as well as Lactose. Yes, these are the things that came up in her test as well as peanuts, corn, and pineapple. They told me that I need to build S's healthy fats (avocado, oils, and butter). The healthy fats help, to build insulators around her neurons, with her insulators being built that will help her fits, and fustration. Kids apparently can never have enough healthy fats, it's ok for them to eat butter for any of us actually.
I decided to give this a try, to change her diet. She is having a healthy breakfast of eggs (which she hates!) and avocado, lots of veggies with oil (no ranch), and no Lactose or any cow milk products. The result has been great!! Is it a cure all - NO WAY!!! She is having less tantrums, her frustrations she is handling a lot better (cries but is trying to control). Her cognitive, is still the same. I didn't except a miracle. And I don't think my daughter needs to be CURED! Her digestion was why I went and that has been doing great.
If you decide to go the diet route, keep an open mind. Don't try to CURE them, they are made special and wonderful. Be open, to whatever happens for us it's helped for others who knows.
Tuesday, March 4, 2014
Don't Compare
I do what I do for my child because I love them! God has given me a true understanding of His unconditional Love. The never ending patience that it takes to speak kindly to someone during a tantrum, rage, etc.. to remain calm and know that you are doing your best. I pray for an out pouring of kindness and Love not so much patience, it's Love that I need to show.
When I am able to laugh at my day, it's me taking a step out of myself and just laughing at the literal viewpoint of my child. If I told her, she can do something when pigs fly, I think she honestly would wait outside for them to fly, change that I KNOW she would. OR ask if that can really happen?
Everyday I since I started homeschool I wake up thinking did I do the right thing? Is this benefitting my child? Every time she has a break down because of going to campus (2xaweek) I know I did. When she is overwhelmed in public stores, theme parks, I am blessed she doesn't have a fit there (anymore) but tries to climb as close to me as she can. Hint: I said there, she saves that for at home.
I am learning with my child, how to make the world in textbooks one she can touch and hold. Everything has to become a manipulative even vocabulary (which is not a favorite subject).
Everyday when I wake I pray for the Grace of God to help me to explain things to my child to get through the day, to learn how to help her understand the world, and more so help to understand her viewpoint. I wonder what her future will hold. We are in third grad doing, second grade work. My child does not understand opposites because, that just doesn't make sense in her mind. She can quote the definition though, just no examples. My daughter gets confused between letter names and numbers especially during reading time when she has to sound it out. My daughter just had an hour long fit because the question stated " How does the city control the number of horses?" She was obsessed in finding the exact number and could not wrap herself around the figure of speech, even when I explained it in a number of ways.
God gave me S because I was called to be a her mother. I see that if we didn't make the choices we did I don't want to think what her life would have been. I love her very much and always will. She is teaching me to not find strength in myself but to lean on God and other people. To step out of my bubble and to let others in.
I am battling things in my life and desires for a quick fits to relax like I never have. Don't worry I won't give in just being honest. Just listen when someone shares, if you don't understand that's ok, really it is. But NEVER compare your own child's life to theirs unless you truly can.
This is a glimpse..
P.s Got to love her little apology notes, we have been working on how to say sorry.
Tuesday, February 18, 2014
Let's Shine
This weekend however, I stepped out of my bubble and really reflected on my children. In the midst of chaos, I realized that I am so proud of them, ALL OF THEM! J this weekend got asked to play on two different competitive club soccer teams. He was doubting himself and his abilities. We live in a place that soccer is one of the main sports and everyone plays at some competitive level. J had been waiting to join club but with the COST $$$ to play I didn't feel that my young kid needed to play. He was on a great team, that he was growing with. However, now that they are all splitting to different clubs it was our turn to start checking around. The main team that he wanted to play decided to take a different route and that left J without a team, that is when he wanted to give up. We told him to pray, and that God would guide him to the right coach and team. He tried for a well established team that is hard to get into, we waited and waited, and had 3 tryouts. During the waiting period, we tried for another team that asked J to play for them within the first 20 minutes. The next night we heard from the last team and J made that one too. He trusted God, thanked Him and learned to so much!
M (my baby boy) got asked to move up to Minor B instead of Caps. I was nervous but I think he'll be ok. I know he'll be ok! I said maybe it will teach him some humility.. Husband's response "Yeah, right that kid is gifted maybe not." I pray he learns something.
S is doing so well in homeschooling. I know that this whole transition is hard for her. However, this weekend we ran into someone we hadn't seen in a while. Their first comment was "She seems so much happier" they had no idea of the change we made. I can't imagine life through S's eyes. Every now and then I get a glimpse on how hard the world must be to process for her. She is truly a joy, to watch her understand things.
I know that my life may not be what my personality fits, and in another time I see myself living in New York, in an amazing loft in the middle of the City, going out every night and living for Fashion!! I would be a hot mess but I would look FABULOUS and get too eat and get in free EVERYWHERE so who cared if I was a HOT MESS!!
That is not my life, I cannot deny that I was meant to be a mom of four highly AMAZING Children. I married a GREAT man that wanted the Same. So in my dreams I am in New York, and every now and then I get to stay up SUPER late and Go Out however, I am always the mom on the sidelines and sitting beside my children reading.. I wouldn't change that for the WORLD!
Monday, February 10, 2014
MIX UP
My children are growing and getting older.. we are discussing things that I never thought they would ask me "Mom what is GAY, not the happy version etiher.. " "When am I going to get my boobies?" etc... I ask for guidance to do my best to answer these questions.
It's going to be interesting to see what these children are like as they get older. People talk about having faith but don't parents have faith everyday - We have faith that our children are going to grow up to be AMAZING adults, have GREAT children, and just plan be HAPPY in life. Having four children God has given me four children with 4 very different personalities. I have a strong, stubborn, athletic and fashionista daughter that is K. I have a athletic, SUPER SMART, lovable, also stubborn little boy that is M. I have a sweet, loving, chatter box, athletic, lazy when it comes to schooling that is J, and S who is sweet, just wants you to love her all day, doesn't care about fashion, but can read till there is no tomorrow that is S.
Homeschooling has been an adjustment for all of us! It's teaching things about myself I never thought too learn, or I needed to learn. I am learning to have more patience because we can never have enough, to approach S with a calm tone at all times, how to be a better parent and focus on where my child is at now and not focus on where my child should be at.
I am little mad at our school system and what I have learned while starting homeschooling. I kept asking them for help to see where my child needed help in. There words "We cannot help her unless she falls a whole grade behind." What THE!!!?? Well... guess what she fell a whole grade behind and you still didn't help so I'm doing it myself
Monday, January 20, 2014
WHAT WAS I THINKING?!
A good note, is that even though we haven't officially started teaching, since it takes time to receive the curriculum, S seems to be enjoying the time together. We haven't had an anxiety fit (knock on wood) and we are showing more affection to dad and I. It also helps me to be able to show this affection as well since I'm not frustrated.
J seems to have started the official beginnings of puberty meaning he is starting to smell and HELLO DEODORANT!! I realized this while trying to figure out why my car smelled like a wet dog. He thought if he used body spray we wouldn't be able to tell but then he smelled like a wet dog with body spray. I showed him tonight how to use the deodorant his question "Do I put in on over my clothes?" The mood swings also, OH LORD save me from the MOOD SWINGS!
One more good ingredient.. to add to my stew I started a 90 day challenge on Body by VI. I am on day 31. I changed my eating habits 8 months ago to what you would describe as a pescatrain (is that even a word?) to only eating fish and no other meats. The Body by VI is a nutritional protein shake, that helps you gain muscle or loss weight (your choice) I'm doing a little of both. It's helping me to exercise daily by increasing my energy with vitamins (in shake) no additional supplements. And yes I decided to be a promotor (ifranke.myvi.net). So that in a way is just a little more added to my stew!!
While school is starting tomorrow for all. Pray for my patience, endurance, to make sure I complete our packing my this weekend. J has a soccer team tryout so pray he makes it and ..... just that I stay focused.
Take care....
Wednesday, January 8, 2014
Update
How do I sum up a year? So many changes..... We stopped therapies for S. I felt like she was associating too much of her identity with it. We don't have a diagnosis however, therapy helped us a lot but there are some things that we need to just accept as her personality. She started music classes and soccer and love's it!
J , M and K have been busy with sports and school. I started back to work as a preschool teacher and went back too college, CRAZY right?! I love it though, love stepping out of my mom role and being validated for what I do. Now that I've accepted four kids in school, college and work BAM!! Life is changing yet again!
We've thought about homeschooling S for a long time. We've been on school break for awhile and S's anxiety has been under control 😅. Yes we have our moments but it seems manageable compared to a full out break down. In my heart homeschooling option won't disappear so here we go on yet another new journey.
I keep being reminded that my role in life is mommy not who I want to be separate of that. God blessed is with each of our kids for a reason, sometimes they don't know how to use their voice and it's our purpose to help them. I pray this is the right choice for all the family. The emotional fits were taking its toll finally on all.
I still get too work but instead of 5 days 2 and yet I'm selfishly morning my/our changes. Wish us the best!