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Jan 11

More than a Poneytail

A few weeks ago  I had a family visiting me with their 7 years old daughter who is autistic, nonverbal, and on the severe side. They were preparing to go to the US for evaluation of their daughter, and wanted to ask me a few pointers about traveling long distance with and ASD child.

We had a nice conversation, but the issue of her being very sick came about. She also was wearing a helmet, because she was banging her head into everything. When I say everything, it means everything she can come across, and if she is blocked to go to the wall, table she will lay on the floor to bang her head. Consequently she is vomiting as well. Clearly she was in distress, and this is been going on with her for several years now. She’s been tested for everything,, and all test came back negative, she had CT scan, MRI, several lumbar puncture, all kinds of blood test for years. Their last resort is to find a hospital in the US to have her evaluated.They made their appointment, and they were in the process of arranging for travel, but before that they wanted to talk to me, since I had experience traveling with my son long distance.

I was able to give them very general advice, and nothing specific to her head banging.  She has a live in caretaker who seem to be very good with her, care about her,  and she seemed to love her as well. The family appeared to be very loving , accepting and devoted to her. Even her siblings were playful with her.

The interesting information they told me that she wakes up happy every morning, no head banging at all, and she does not wear the helmet till about noon. After about noon, she needs wear the helmet , because head banging and vomiting starts. They wouldn’t dare take the helmet off till she falls asleep. This was an odd information, but very valuable. I asked their permission to take off the helmet, which they grant it reluctantly. As soon as her helmet was off, she bolted to the door to hit her head, but luckily I was able to prevent that. As I was about to put her helmet back, I noticed she has a tight ponytail. She had beautiful long hair in the ponytail tail. I know from my own experience when I put my hair up in the morning, by early afternoon I get a headache and sometimes  nausea. I ask the parents if she gets her hair up in the morning or only when they have to put the helmet on. They told me that since she is so sick on the afternoon, she takes a shower in the morning and her hair is put up in early am.I released her hair, and asked the parents to give her some Motrin right there. In less than an hour she was fine smiling, no head banging no vomiting. They were amazed as I was, and cautiously optimistic. They did not put her hair up for the following days and since then she had no head banging event, nor vomiting. We taught her to touch the head if it hurts, and the caretaker is working with her to teach her how to sign if something is hurting. That will be a long process, but I think she will eventually get it,and use it. Her appointment  to go to see a doctor in the US was cancelled happily by her parents, and she had a nice little haircut as well to keep the weight of her hair off. She absolutely loves her new hair, and she looks very happy. She puts the helmet on her bears head and put a bandaid on his head.

It is very difficult to communicate with non verbal children, and the worst part for me with my son when he was non verbal, that I never knew  where he was hurting. When he started saying words, my number one priority was to teach him a signal or word , or to point where is the pain. It took time, but school, therapy and home intervention helped him to develop this valuable skill.

Also, it is important to make sure everything we do with them is the way we want to do things for ourselves. If some clothing is itchy for me, that might be itchy for my child too. If my hair pulled back tight, that might be a discomfort for a child too. If the shoes is fastened too tight and bothersome, it maybe causing the same problem for the kids too.

My point is, we look at these problems with non verbal kids as a complete mystery and major medical problems. It is ok to be overreacting, because we want the best for our child, but  to get to the bottom of the problems we can start thinking of something basic as well. I certainly don’t blame the parents for all the tests they put this little girl through, they just want the best for her. I think sometimes the doctor can look beyond the obvious and start asking simple questions to see the big picture. Parents are too emotionally involved, and many times we miss something, that it is apparent for an outsider. This case was a real eyeopener for me too.  It made me realize that sometimes I should look into the daily life of my son , and then maybe I can get answers for some of his problems.

This little girl had been suffering from the ponytail headache that many of us experienced , but she could never been able to verbalize it. I thank God that this mystery medical condition was solved, and she can take off that bulky helmet and enjoy living.

Going back to basic  can be the solution , but never  trade it with professional medical care. Always better to be safe than sorry.

 

 

7 comments

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  1. ummi

    Alhamdulillah sis, sometimes challenging behaviour is not all about autism but about simple details too

    1. myautisticmuslimchild

      very true, but also we are so overwhelmed with the task of caring for special need child that we do not see beyond the obvious. WE must get help, all parents with or without special need kids. And the ones who are able to reach out and help, must go and help the ones are needing it the most.

  2. Afshan

    I feel like crying when reading this. I always think the problem with my daughter is more complicated or I’m in denial. I think i am definitely emotional parent. Being emotional does not have its advantage as a parent. I also was in denial for many years because of being really not able to face reality that something is really wrong with my daughter. May Allah help all of us, parents, be the best advocates that we can be. Moderation is so important!
    Ameen.

    1. myautisticmuslimchild

      many of us are emotional parents, because we want the best for our children. Moderation in everything is good,. The key is to surround yourself with people who care about you and your child, and listen to them ,. This doesn’t mean you have to take everyone’s advice, but sometimes listening can lead you to a solution, that you may find on your own. Parents with ASD kids, or any other disability /disorder have to deal with a lot. As the saying goes “it takes a village to raise a kid” well it take more than a village to raise a special need child. keep that in mind, Afshan because none of us are super moms or super dads,we are human with deep feelings, hurt and hope. Take care and thank you for your comment.

  3. Floortime Lite Mama

    great problem solving on your part !!

    1. myautisticmuslimchild

      thank you. If everything else would be this easy, life would be so much easier. I will be visiting your site, bc Floortime is the subject I need to learn more about, and you seem to know a whole lot about it.

  4. Jaclyn

    But wanna input on few general things, The website style is perfect, the content is real good. “Believe those who are seeking the truth. Doubt those who find it.” by Andre Gide.

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