Posted by: myautisticmuslimchild | November 21, 2012

Mental Health Day #21 NHBPM

Day # 21 mental health.

Our body and mind are connected, work together in harmony most times, but when the balance shifts one way or another, the imbalance can cause serious consequences.

Mental health is important in our physical and emotional well-being. With the healthy mental state we are able to navigate through life’s stress, contribute to our community, capable to learn new skills and coping with afflictions. Poor mental health will take ones ability from achieving what they could otherwise, they may lack of a full enriched life and it can lead to substance abuse at times too. Poor mental health can enhance the symptoms of physical ailments as well. To take care of ones physical and emotional well-being takes an effort, as well as awareness to recognize if there is a problem that needs to be addressed.

In many cultures mental health issues are not being recognized, or if they are , it is hidden and barely  taken care of. This may result in serious effect later on, when one is not getting the necessary help they need.

A well-balanced and treated mind is crucial for all, and it is certainly important to those who are battling with other physical or mental conditions.

My son with ASD had been mistreated in school (once in private school, and once in public school) severely. He was under such stress at the first time that he scratched his face bloody, but since he was unable to talk, express his needs and abuse to me I was not aware of the problem for a while. His mental state was in a desperate state, and it  took us many months to correct it, and allow him to gain his self-confidence back. His academic growth stalled, his emotional well-being was in a crisis.  Once we healed his psychological wounds, he started to cope with every day’s stress much better, his academic achievements were  soaring high, his whole disposition was warm and lovable and well-balanced. He got sick less often  as well, which is  an amazing progress, and that time we knew he has a good chance to be able to stand on his feet later on in his life.
Unfortunately we experienced another bad spell with him after the public school abuse, and that recovery took even longer. It took about a year to recover him, with a help of many professionals, that included his teachers in his new school, and the therapists who were working with him. With an effort of those who are involved, and a continues love he received from so many places and people, allowed him to regain his self-confidence, self-worth a better physical and emotional well-being once again.

Many claims that some of the afflictions are necessary to be better and stronger. My opinion is, no affliction that affect the mind in a negative way is needed to be strong, as a matter of fact, they need to be avoided by all costs. The damage that was done to my son carried too much of a negative effect on his state of mind.

I put a great deal of importance to raise my typical daughter and my ASD son in a nurturing environment, where their  emotional needs are met, taken care of and balanced as much as I can.

Mental health is a serious concern. Regardless what it maybe, if it is depression or schizophrenia, or anything in between, it  needs to be addressed as soon as possible, because  psychological issues can make or break one’s life.

Posted by: myautisticmuslimchild | November 20, 2012

Nature Heals Day #20 NHBPM

Day#20 Alternative treatments, medicines, regimens.

Being exposed to modern medicine alternative treatments were foreign to me. It is not that I do not believe in home remedies, it is just looked  strange. I accepted chicken soup for flu and cold, and honey for cough and that is far my knowledge and open mind took me.

My perspective changed rather quickly after my son had numerous medical problems, and nothing seemed to help, or if it helped the side effects made him even worse. Continues ear infections caused him to be on antibiotic almost monthly,because of his allergies he had to take two different kind of medications for years along with rescue steroids.  I had a whole pharmacy in my backpack, prepared for everything. It was a sad sight say the least, but it was necessary.

I remember the day when all started to break down, and I started looking into alternative treatment. My son started pulling on his ears a for sure sign for him for ear infection, I checked him with the otoscope and sure enough he  was sick again. It was after hours, so we had to go to urgent care which was packed. As I was driving home I discovered that I do not have his ear drops to calm the pain. I passed by the vitamin shoppe, and figured they might have something to help us. So we stopped and asked. While the lady helped me I told her about my story, and that just opened a flood of information for us. Needles to say we got natural antibiotic, ear-drops, and lots of useful information.

She told us to go try out the salt room for his allergies too , and we were told many kids with chronic ear infection benefited from that alternative treatment. Needles to say we scored high with the supplements and salt room.  From than on  we were frequent shoppers in that shop which was winding down to fewer trips. My son’s health improved dramatically.

We all improved a great deal, and our family was more relaxed happier, and we took much less medicine, actually we did not take any after a while. Salt room was a great addition for us. My son stopped taking Singular and Zyrtec, and he did not need any  steroids. Ear infections reduced and later completely diminished on him. My typical daughter who was ready to have her tonsils and adneoids out avoided the surgery just from the salt room. She used to snore so loud, I told her I do not ever need to go to see her in the room at night bc I can hear her from my room. The snoring and sleep-apnia disappeared completely. The benefit of something natural was absolutely amazing.

After these experiences I searched out information every time we had any problems. My ASD son’s sleep issues were resolved, making proper arrangement for proper nutrition was a best thing I had ever done for them. Juicing fruits and vegetables twice daily had improved the nutritional status, and reduced illnesses dramatically.

Alternative medicine might not replace  traditional medical treatment (although it did for us in some cases) but it sure makes life easier and healthier.

 

Posted by: myautisticmuslimchild | November 19, 2012

Life and Death Day #19 NHBPM

Day # 19 , I chose the prompt “Life and Death.”

Life is very fragile and it can be taken away in a blink of an eye, unexpected, in a hurry.

My son was only 5 years old,  he was playing and singing in one minute, and next moment I find myself holding him in my arms looking at his pale face blue lips and performing CPR while talking to 911.

I could not believe this is happening , I felt  like I was outside of my body watching this as a movie, looking at a desperate mother trying to revive her child, pleading to God to let him live,bagging the dispatcher to make the ambulance come quicker.

Working in the medical field, death was not something I never seen. I seen it many times, performed CPR many times , but it was always someones family member. The loss was painful always, even the circumstance when we all knew it might be better for the patient.

Now it is my own son, laying on the floor lifeless, and the only thing I can think of asking God “please bring my son back, let me see his eyes twinkling, his smiles, hear his voice one more time”. A reminder how delicate life can be, how quick we can lose what we have. A lesson to appreciate every moment, good or bad, and learn from it, grow from the experience and move on in search of better things.

By the time the ambulance arrived he had pulse and he was breathing. He was transported to the nearest hospital. That day he died 3 more times, and they told me to prepare for the worst. The cause unknown. I was replaying his whole life within minutes, the struggle he had with his autism, the happiness I seen in his eyes while playing with his sister, myself and other family members. The pride he showed when he learned a new skill.  I saw his older sisters face  who was only 6 years at that time, and wondering if her brother will be back to play with her. I saw her big blue eyes shading tears, and telling his lifeless body “Amin come back to us and you can always play in my room, whatever you want to take from it is yours, just come back.”

And Amin came back to us, better than ever. He had 3 more episodes thorough 2 years of time, a sudden death that no one can find a cause for. A reminder to all of us to appreciate and love what we have. An indication that God puts us on this earth to learn and be the best we can be. Appreciate, and celebrate this life, and make the most of it. Live it always so you never ever have to  look back with regret, make it as full as possible. Life is beautiful with all its ups and downs, and life is fragile, so take good care of it.

Posted by: myautisticmuslimchild | November 18, 2012

When you Taking Care of My Son… Day #18 NHBPM

Advice for someone who is caring for a patient with ASD. Day #18 NHBPM.

Our children are our pride and joy, and most of us do anything to make them happy, healthy and successful in this life.

There are kids who live with chronic illness,visible and invisible disabilities. They need more caring, nurturing, protection and much more patience.

Unfortunately my son’s health is not the best. He gets sick a lot, and he had to be hospitalized in ICU several times. We did have good experiences in the hospital, and the best thing  I did as a parent is to tell the staff about my son’s autism right away.

Autism is very complex, with many different issues, difficulties that others may not notice, understand. That is why it is crucial to always have a list with a parent/caretaker that explains about behavioral issues, how to avoid and diffuse problems.

The medical staff. doctors, nurses, respiratory therapist, EKG/EEG technicians, lab personal all were aware of Amin’s challenges. They all worked together, asked me question, and followed what I told them in a best of their abilities. There are times when one can not follow through with all the requirements, but still they are able to keep in mind some of the techniques that may help the person with  ASD.

My advice would be to all medical professionals, and other caretakers to please listen to the person that is closely involved with the child. Those are the people who can help make anyone perform  medical treatments , tests, or anything that maybe necessary for that child.

Furthermore, you will need more patience with these kids, and understand that they do comprehend things, but they have a different view of life , their surroundings and other’s actions. They need predictability, and since they are not on their strict schedule, they feel uneasy, scared and confused at times.  One must understand, rushing these children will create not just a complete chaos, but it is a good chance that the child will  not get the tests he/she may need nor they will get the appropriate treatment.

Also, medical professionals need to keep in mind, that some of these children can not talk, or if they say words it may not be functional, but they still have feelings. So belittling them in front of parents or other personals will create a very negative feelings for these children, a word can break their heart, or make them angry, depressed, hurt in many ways. Words hurts just as much as physical abuse.

Moreover, when you ask a question, use simple short sentences. Do not complicate the questions, and combine more than one inquire in one sentence. Asking questions that can be answered with “yes “or “No” is the best approach at least until they warm up to the person.

Keep in mind that ASD kids are very visual, so when explaining to them the procedure tests, treatment , you can show them the equipment that will be used, allow them to touch and explore if it is possible. Tell them how it may feel, what is the purpose and perhaps demonstrate it on the parent or other siblings first, so they can see what to expect.

I know that times is money, and we have to rush from one patient to another, but I do not think a few minutes demonstrating what will happen can make you pull overtime., in fact it will save time.

Approaching ASD kids with hostile will create hostility, and that will never have a good ending. Try to be friendly, smile and be very confident.

Ask the parent what reinforcement works , and offer it after the successful treatment. Predict  the possibility of reinforcement before the test/ treatment is done.  If there is any book about the future treatment show that to the child with pictures so they may see what they are about to experience.

It is a possibility that regardless what the medical professional try to do along with the caretaker ,nothing is being accomplished due to a melt down. In this case after a few tries it should be up to the parents if they want to continue unless it is a life threatening situation.  If it is a routine test /treatment one may reschedule for a better time. At that time, use social stories to prepare the child for the future treatment.

Medical professionals need to make sure that all sensory issues are addressed as well, so it will not interfere with the future treatment. My son is very sensitive to the disinfectant that they used in his room. Every time they mopped the floor, cleaned the bathroom he got very anxious and almost unmanageable. I finally after 2 days I realized that is the problem. I simply told the nurse and the doctor. They called housekeeping and they made the arrangement for a different disinfectant. The smell annoyed him a great deal, once it was eliminated he was very cooperative.

Moreover, one should keep in mind, tat some of the ASD kids doesn’t like to be touched. Sometimes, there is no other way to do the exam, or treatment, but if they can limit the touching might be helpful as well.

It is very important to make all these experience a good one, and never leave the child with a negative memories. It takes work, but the end result worth every moment.

 

Posted by: myautisticmuslimchild | November 17, 2012

My Strenghts and my Weaknesses Day#17 NHBPM

When my son was diagnosed with autism,it really rocked my life, but there were no time to feel sorry for my son or myself either. My strength always been is to try to solve problems that occurs in a best of my abilities. I do not like to waste time, and I always try to find solution to issues that bothersome, or needs to be done.This is certainly my strength, and always served me in a positive way.

Furthermore I do not rest until I find a resolution for the problems in my life. I search, and research, and even when I am on the right track I am always open to learn more. In my case, I am continuously searching for new information about autism, so I can better serve my son, and help him to be more self-sufficient, and perhaps he may be independent when he grows up.

Also, I developed a great deal of patience, which I consider my strength as well.

With a few of my strengths there are many  weaknesses that I have to deal with in a daily basis.

I always advice others how they have to make time for themselves, take time to rest, and be easy on themselves and have hope. Unfortunately I am still these days not following my own advice. I put a lot of pressure on myself , and trying to do as much work as I can in a given day. I feel  guilty if I do not teach my son for a certain amount of  hrs/day, if he doesn’t get his playground time, if he doesn’t get his nightly walking. Everything in between, I put a pressure on myself that he will spend his time in a constructive way.  I do not want to give myself any time, even when I could sleep in.  I force myself to get up and set up the classroom or set up the art projects I will be doing on that day or week.

My weakness is always been not allowing myself to rest, and even if I do it, I feel a tremendous guilt. Moreover, I always been very hard on myself  thinking I might not be doing enough for my son. I know these weaknesses will never lead to anything positive, and in time it will have a negative impact on me and the care of my children. I am getting better about it, but it will take some time until I truly follow what I always encourage others to do… rest.

I think our strengths and weaknesses make our life go on and learning from our mistakes, and relying on our positive attributes can really change us for the better.

 

Posted by: myautisticmuslimchild | November 16, 2012

FREE SCHOOL for children with High Functioning ASD, UK

Please can UK parents complete this questionnaire for the HACS team – they are opening a FREE SCHOOL for children with High Functioning ASD / Aspergers Syndrome and need your views

HACS Free School

Parent / Carer Survey

Here is the link for the survey, and before you click on it  you may view the questions on this page.

https://www.surveymonkey.com/s/GRBRY2D

1. Does your child have a diagnosis of Autism, High Functioning Autism, Atypical Autism, Autism Spectrum Disorder, Autism Spectrum or Asperger’s Syndrome?
Does your child have a diagnosis of Autism, High Functioning Autism, Atypical Autism, Autism Spectrum Disorder, Autism Spectrum or Asperger’s Syndrome?   Yes
No
2. Does your child have a Statement of Special Educational Needs?
Does your child have a Statement of Special Educational Needs?   Yes
No
Midway through assessment process
3. Is your child considered to be of “average” or “above average” intellectual ability? (i.e. they have an assessed IQ of 80, or average academic performance at school and do not appear to have general learning difficulties)
Is your child considered to be of “average” or “above average” intellectual ability? (i.e. they have an assessed IQ of 80, or average academic performance at school and do not appear to have general learning difficulties)   Yes
No
4. Has your child had a cognitive (IQ) assessment done by an Educational Psychologist (such as the WISC or BAS)?
Has your child had a cognitive (IQ) assessment done by an Educational Psychologist (such as the WISC or BAS)?   Yes
No
Unsure
5. If so, what were the results?
If so, what were the results?
6. If HACS were to open a Free School would you be interested in your child attending?
If HACS were to open a Free School would you be interested in your child attending?   Yes
No
*

7. Parent/Carer Name

Parent/Carer Name
*

8. Postcode

Postcode
*

9. Child’s Date of Birth

Child’s Date of Birth   Day
Month
Year
Posted by: myautisticmuslimchild | November 16, 2012

Comic Strip about Autism Day #16 NHBPM

Day #16  . When I was contemplating which prompt I should use , my daughter told me to choose the comic strip, and she volunteered to draw the pictures for my story. So enjoy it everyone, life can be a big comic strip sometimes if we look at it that way.

Raising an autistic child is a challenge, but sometimes answering questions about autism can be quite amusing.

Sometimes the questions or advises I get blows my mind, and I have to look twice the person to make sure that they are actually serious about what they saying. I am not sure if it is lack of education, or ignorance or just evil intention, but either way me and my daughter get a good laugh out of it. Here is our latest encounter that happened in the playground a few days ago. It took every inch of my body to control myself and not to start laughing.

Posted by: myautisticmuslimchild | November 15, 2012

Health Activist Hero Nomination Day #15 NHBPM

Day # 15 I nominated Sugey Cruz-Everts and Richard C. Everts for WEGO Health Activist Award.

Sugey and Richard working very hard to make awareness about autism, and always share every bits of information about new therapy or research articles.

The Tommy Foundation was founded in 2005 by them, and it flourished into a well-known and respected organization in Pennsylvania.They are responsible organizing countless events for children in a the autism spectrum. They created outreach program for the affected kids, young adults and their families. They created a documentary about autism, and families affected across the united states. The film is called The United States of Autism, where many families across the USA share their stories, their hopes about autism. This film brings families together who are coming from different background,  religion and culture. It represents how we are all in this fight together, and how we all hurt, yet we still keep our hopes for our children. The movie reveals a strong emotion about this disorder as well as give hope and encouragement for the future. It  expose the hardship, yet still shows the positive attitude of the children and their families.

Sugey and Richard took 40 days out of their lives to have this movie filmed, and countless more days to develop and make this movie for the general public. While the movie was created, they still continue their work in their community to help other families , to coordinate outreach programs, organize awareness events, and fun-filled activities for these very special kids and their families.

Sugey and Richard has a lot of knowledge about autism, they are familiar of every aspect of this disorder, and they share their knowledge with the general public.

Despite the hardship they experience with their ASD son, they never stop offering a helping hand to others.

Posted by: myautisticmuslimchild | November 14, 2012

Advice for Dealing with Negative Feedback Day #14 NHBPM

Rather you have visible , invisible illness or disability, there will be people in your community who just plain mean, discontent and give their opinion  without anyone asking for it. Don’t you just hate  those who are getting into your business, and apparently know it all? They do not have a medical degree, but they expect you to do everything they tell you to do.

Other times you get professionals who just can not keep their theory to themselves, and act like that you have to obey them whatever they may say.

I met both kind of people more times than I like to, but along the years I learned how to weed out those bad  feelings that they inflicted on me and my kids.

It is hard  to deal with things that I have very little or no control over regards to my son, but when someone comes along who doesn’t have a clue what it is like to care for an ASD kid and  pushing their opinion on me, can be quite disturbing.

They used to make me feel bad, and many times I felt like I might be a the worst mother on earth, but then I realized it is me who is caring for this special child and not them. So, slowly but surely I adopted the attitude of “ignore the ignorant”.

It is human nature to offer help, advice  and have an opinion just about everything, as well as getting into other people’s business. The question is how it is being done.

We have to keep in mind, that many times people have good intention, and they just simply try to help, offer their experiences, opinion or share something that they heard or learned. I think once we see this approach we can take  those recommendations with ease.

Also, there are times when advice is used in a malicious  judgmental and degrading way. Those are the times when we just have to be a better person and ignore them. I had been judged, belittled by many in different circumstances, and it made me feel bad, hopeless powerless. There are times till these days, when people make comment and it feels like someone stabbed me in the heart. It takes time to develop an attitude that allows us to overlook others ignorance, and able to sort out our feelings.

The main defense for me is to surround myself with good, understanding friends and family. If someone cut me off guard with words, or actions, I can always go to my friends and family, and just talk it out.

Also, it is important to look things on a positive note. Many times when we inform others how they make us feel, usually  we find out that they wanted to achieve the opposite.There are really  few people out there that are plain evil, and I do believe in that. Sometimes the choice of words are not the most appropriate, and can cause misunderstanding and hurt others feelings. I always want to give the benefit of the doubts, and that is another way for me to deal with negative feedback in my community. Showing understanding and good faith in most  circumstance can alleviate hurt feelings.

Furthermore, educating people about illness or disability can change their perception, and they may become more tolerant and understanding.

The small percentage of the population that they are just pure evil , regardless what you do or say to them it will never make a difference. At least there is a small chance you will see anything positive come out of their actions or mouth. In this situation do not take anything personally, and remind yourself that they may have a very miserable life and their sad life is projected toward others with their words and actions. Never allow yourself to get down to their level, and always know what you do  takes courage, and not everyone capable to endure that illness or care for a special need person.  So understand, you are much better person than the one who is trying to put you down.

Humor is a great way to dismiss any ill feelings toward the ones who inflict hurt by actions or words. Believing in yourself helps one to  overcome most obstacles. Having a strong faith in God and his decree will carry you through all calamity.

 

Posted by: myautisticmuslimchild | November 13, 2012

Best Doctor’s Appointment Day # 13 NHBPM

Day# 13, and I decided today to use one of the bonus prompts.

I had many doctor’s appointments for my son unfortunately, and overall we had  a good experience, but it was always something stressful about it.

After my son’s hospitalization we were referred to a pediatrician close to our home. That was already a bonus point, not to drive too far with him in his condition. Once they found out that we just got home from ICU the day before, they were able to take us in within minutes. Now how can anyone complain about that? The doctor was very nice and wanted to know everything about my son. She actually sat down in the room with us, asked numerous questions, examined him , and she was extremely patient with him as he was not cooperating too much. She did not just ask about his medical condition, but asked about his autism, what are the concerns, what are the therapies he is getting. When I told her that he is not getting any therapy at that point, she immediately wrote an order for speech, OT and PT to be started ASAP. That was just unexpected, since all our previous encounter with other doctors resulted in no orders for such therapies.

Than she explained that she needs to order other lab tests so she can see the whole picture about his health. While she is talking to me she sat him on her lap, rubbed his back, made him feel very comfortable. Amin felt very comfortable sitting on her lap and being spoiled in every way.  Oh yes, she even had a lollipop in her pocket, which Amin explored very extensively, and emptied out all the goodies.

The report from the hospital was not very favorable, but she took time to explain all the possibilities. We spent over an hour in the room with the pediatrician. This never happened to us before, and believe me Amin had many medical problems previously. No one ever took the time to ask me questions, or be patient to completely examine my son. They usually give up very quickly when he started to get fussy. It was refreshing to know that someone looked at my son as a child who needs help and medical attention regardless of his autism, and it was certainly refreshing to know that my concerns were heard and addressed.

Many times the nurse came in to tell the doctor that others been waiting for a while, but she did not leave us until she was satisfied with all the answers and ordered all the necessary tests and therapies.

After all these years finally my son was very well taken care of. We did not want to switch pediatrician, but in the hospital the ICU physician insisted on seeing this doctor, and I will be forever grateful to him for being so persistent about it.

She was my son’s pediatrician for many years to come, until we moved away from the area. Certainly the best doctor’s appointment we ever had, and we sure miss it  now.

 

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