frustrations

One of the main reasons I left the previous Arabic Centre was because of the amount of stress I felt while studying there. I believed they had good teachers and curriculum, even if it was hard. The exams were also very hard, and the oral exams were worth equal weight to the written. I often failed my orals and excelled in the written. I understood a lot but I have a very hard time speaking Arabic. Even if I might know the answer, the amount of anxiety I feel when put on the spot is too powerful for me. I had numerous conversations there about this aspect, and a teacher said to me, basically, this is the way it is. You have to do it this way. And I am sorry, but I really disagree. Sure, if I want to study THERE, at a place unwilling to acknowledge my difficulties, I would have to do it that way. But I do not believe that there is only one way to stay on any path. I believe we are all different, with unique capabilities, and in my opinion, if someone shows the ability, but has almost a physical or emotional or mental block, then I believe learning centres have to find a way to help the student, not force them to quit and feel like a failure.

Thankfully, I am stronger now than I used to be. I didn’t feel like a failure, but I wonder how many children in the educational system do because of their unique issues? I personally had a hard time in school growing up, and always felt uncomfortable around people. I still do. I don’t like how many children are bullied today; how many school shootings I hear about; how many people drop out, thinking they are stupid. Personally, I think there is a HUGE problem in the educational system.

It is proven that children learn in different ways. I watched my son count a math problem visually without any visual aids. It was fascinating. I believe he is intelligent, but I KNOW if I send him to school, I will be setting him up for failure. If you think there is a problem in the educational system in the West, one can only imagine the problems here in Egypt! I worked in a private school for 6 months, and immediately felt that I could do a better job “winging it” then these supposed educators could. I know that sounds arrogant, and there ARE good teachers here, but unfortunately employed by a faulty system. I also believe that people get too wrapped up in numbers, in pleasing others, in the business of it all, that we have lost the main purpose of the system: the nurture our children’s minds.

I admit, I am not always the most patient person, and my son does push my buttons. Actually, the sounds of the children fighting always set me off. I don’t actually know how I am going to home school them at times, and whatever it looks like we achieve here, is a much prettier picture than what occurs. However, I do know I am not forcing my children into pegs which they weren’t meant to fit. Any of them, but especially my son. No one will understand him. I will not send him anywhere that will add to his difficulties.

I do worry about his “socialization”, especially having a disorder that makes socializing complicated. But, sending his little innocent self to a place where he will already stand out, is not going to socialize him, it will only add to his insecurities. And this is coming from someone who was tortured for years, by bullies. I really do not know how we are all going to fare, but as a Mother, my job is to PROTECT him first. Most of what I have learned that is valuable in life, was not learned in school anyhow. What I learned there, most assuredly led to more psychological issues than it was worth.

I am at a loss really, how much intolerance there is amongst humans. It is scary to me, how much we hurt and torture each other. How little we try to understand, and accommodate. How judgmental we are.

Even recently, dealing with these “doctors”, and spending way too much of my time discussing why my son is learning classical Arabic. Of course *if* he learned Arabic at all it should be the local dialect, not the classical Arabic that he would need to watch the news or read books, or listen to Quran. They just could NOT comprehend why a child would learn that. Actually, the centre also believes in mainstreaming all HFA children which also blows me away. I do understand, homeschooling is not even legal for Egyptians. But, educators and doctors should really be up to speed on how popular homeschooling is in Western countries these days. I read SO MANY horror stories about what typical and challenged children have to face from students and staff in school, that it literally blows my mind. And never mind that, if you do not agree fine, I understand how the culture is here. But please do not make me feel that whatever I am doing out of love and concern for my children, is WRONG simply because you cannot understand it.

People fking bug me. I have literally not slept in a week because of all these issues, and this place should be a support for me, especially considering how much we are paying for it. I am of course, on the look out for other places, but have enrolled him for group therapy in the meantime, because frankly there is not much here, and I do believe they can help because they did pick up on small things with him that I worried others might overlook, even though the time he spent with them was not hugely significant. So, I am hoping that they can aid him to feeling more comfortable in dealing with others and sorting through his emotions, and I really just want to learn more and have the experience to compare with other places. I do not want to judge THEM so harshly either, however tempted I am…

I have prayed and prayed and cried and cried… and can only try my very best, even if it never ever seems like it is enough. Giving up, giving in, this will never be an option.

aftermath

I read that a lot of mothers feel grief after a child’s diagnosis. I have cried a few times since hearing the word Autism. Frankly, I diasagree with the decision to remove Aspergers as a term of diagnosis and chuck it under the umbrella of Autism. I think most people in this field know very well Aspergers is high functioning Autism, but for the lay people it is actually more confusing. So, if you inform someone your child has HFA then they are like, hunh? But he seems so normal. Yes, my baby does seem normal to many. But it is very clear that he has extra needs and difficulties, and his brain works differently than that of his siblings.

Like yesterday, we went to Kidzania and in order to drive a motorized car -an obsession of his- he had to get a “hospital check” then line up for a “driving course” to get a “license”. He was incredibly patient I noticed (strangely for him) but what stood out was how oblivious he was to the pushing of the older boys, and also how he didn’ t understand to wait his turn. But he did root his feet to the ground, and I had to stand guard because the older boys kept trying to butt in line and were aggressive. I did notice how different he seemed next to a smaller boy also. My son would reply if someone asked him something but mostly you could tell he was very fixated on what he wanted and didn’t attend to most of the other stimuli. It was strange in a way, because with his family he would fight and scream and push, but in public, it was like no one else existed. 

What hurt me recently is when people who think they are helpful say things like: the doctor must be wrong; or he is still small he can grow out of it; and Allah can fix anything. Now, the last part I believe is true of course, but my goal isn’t to fix him or make him normal, it is to help him be the most successful person he can be, regardless. I don’t think there is a “cure” for HFA just like there isn’t for downs syndrome. That is not to say Allah isn’t all mighty, but sometimes things just ARE. And trying to hope for something unrealistic doesn’t seem like a practical use of my efforts.

I guess I am blessed to have worked as a behavior therapist because I accept my baby this way and my only goal for him and our family is to improve any difficulties we have. I believe he will have more challenges in understanding things, and I am willing to do whatever he needs. I do not believe he needs to change OR fit in to society, because I am NT (neurotypical) and let me tell you that it did not work even for ME. So, why would I put that pressure on him?

I guess some people think I live in a bubble, but I believe it is them who are delusioned. My goals for all my kids is simply to protect them as long as I can while helping them navigate this world and become successful, loving, caring, humble, mature individuals. I think they are all capable of it, but the trick is to tune in to them, what they need to thrive, and not force them to assimilate to this corrupted world.

So ya, I have cried some since hearing he is on the spectrum. But not because of grief for who he could have been. Simply because I know he will -is – having a harder time. He struggles more. He doesn’t get lot of things. And also we need more patience to not only help him, but to fight off ignorance and stupidity of others, and it can be heart breaking and confusing and lonely. Especially, here in Egypt where there is even less acknowledgement, understanding, and compassion. Here, even more than the West, is less help and support and a huge desire to fit in, look and act the same, and be mainstream. It is so maddening!

It took me over 30 years to accept myself, stop trying to fit in, deny myself the pleasure of my own ideas and opinions and I will not do that to any of my children. I dont think I am a helicopter parent by any means, but I will stand up to anyone or anything I feel leads to the corruption of their individuality; their innocence; their unique minds and personalities and desires and dreams! And I cry because THAT is hard today. And now, with this diagnosis, of course it will be a bigger battle. A lonlier one. But, by Allah, I will not stop. We will overcome it, in our way. By our standards. And in our own time.

Diagnosis

I know that many people would probably like to keep this stuff private. When I was coping with difficulties in polygyny, I was forced to keep it private and it was a difficult task. I am a private person for the most part, but writing about my struggles helps me to cope and keep it in perspective. Writing in public also gives you a sense that perhaps your pain might impact someone else in a beneficial way. I also decided to write about my son before his diagnosis, because inside, I have known for a long time what was wrong. However, I am not a doctor, and my opinion is of little value to most. One of the reasons I went to get a diagnosis was to confirm (or deny) what I felt in my heart. And to validate it to others, I suppose. Not that I care greatly what people think, but, if a doctor says something, then others are more likely to take it seriously. So, for my own struggles with him, people would not consider that he just needs more discipline. Or at school, he will not simply be labelled naughty. When I tell people not to feed him crap or put him in front of the tv, there should be legitimate concerns. Of course, as his mother, I have all those rights anyway. But when it comes to my son, it is MORE important that people LISTEN. With a diagnosis, people are more understanding, more co-operative, more helpful. Or you would think, anyway. I am sure I will find that to be false at some point too.

A few months back, I was on the verge of a nervous breakdown. No one takes me seriously really. But I was so stressed, I felt exhausted and in physical pain all the time. I felt so burdened. When I went to a shrink, she said one thing that stuck with me. My feelings about my son are a trigger. I need to know what is wrong, in order to know how to move forward. I guess I felt that even if he were diagnosed, nothing would change. I would still feel isolated and without support. I still would not find the therapy he needed. Afterall, most parents I know with special needs children come to ME. Who should I go to?

But, that doctor’s words stuck with me. No matter how much I felt I knew the problem, I was running out of solutions. I was a one man team. And I was getting tired. I needed input. Guidance. Support. We did ok for a long time. We overcame many issues, such as self injury, sensitivity to tooth brushing, sitting to study, and more recently, wearing his eye patch to correct his vision. And, in all honesty, there was a small part of me that did not trust my own experience. I felt I was too close to the situation, and with too much experience dealing with autism. Maybe I was seeing things that weren’t there? Many people did not see what I saw. I am blessed because my husband supported me when he realized I was at my wit’s end. We paid to get a very thorough and expensive assessment, and I am glad we did.

I went yesterday, and was informed that he is in fact on the spectrum, diagnosed as having high functioning autism. I did cry. Out of grief for his difficulties (and mine). For his future. And also, out of relief, to know, finally the truth.

I think the hardest part till now, is people doubting his diagnosis or telling me he can grow out of it. I know for a fact, his brain works differently than any of his siblings. In some ways, he is more similar to his elder ADD brother, but even still, he is definitely different. Not different bad, but he does not see the world like we do. He doesn’t understand things like we do. He does not feel things in the same way as we do. Think how we do. It is very obvious to me, and people who think that he will suddenly “grow out” of this or that he does not have HFA, or that he and I have not suffered for years trying to figure out what to do… well, that really p’s me off honestly. It is almost worth a swear word.

I am so grateful that he has many amazing skills and qualities. That he is verbal and mobile and that things are not worse than they are. But we do have a winding road to travel, this I am sure. We are currently working with the centre on a plan of action for him. I am actually very confused what to do, and filled with fear and doubt, and worry. How could I not be? But, we are on the path inshaa Allah, leading in the correct direction. We are not completely lost, even if it feels like that at times. There is some sense and order that was missing before. Some more choices and clarity, and by Allah’s will I am sure we will be just fine.

we plan and Allah plans

The markez where I am currently studying has 12 levels. After 9 months at the other centre, I entered here at the 5th level and completed 3 levels alhumdullah. Most of it was actually review, and I considered it an opportunity to improve in my areas of weakness. Eagerly awaiting the 8th level, and I’ve been informed there isn’t an 8th level at the moment because of the lack of students. So, now I have to wait a month until the current level 7 completes their course and hopefully we have enough students to open the level! I was really upset and discouraged at first, wondering what to do… especially since I am in a bit of a hurry to get back to homeschooling, and feel I finally accomplished something.

The twins are doing pretty good at their markez as well. They can read Arabic from Noor al Bayan with tashkeel, so I’m not willing to pull them out just yet either. We will also start with a Quran tutor at home, so I want to see how that progresses too.  Unfortunately, teachers are often unreliable so I hope we can find something that will eventually help us transition out of the centre.

The process of assessment began on Thursday for my son. He has more sessions this week in shaa Allah. Comparing this centre to other assessments I have heard about here and abroad, I do feel confident that they are experienced and have a decent process. Honestly, I feel anxious about the result, that perhaps they will tell me something completely different than I expect. In all honesty, my biggest fear is that they will say he is fine.  I know that sounds strange, but we have a lot of difficulties at home, and he is stressed so often, that if a professional isnt able to give me guidance, it will be as though someone told me the sky isn’t blue. I simply won’t be able to comprehend my next steps or solutions. I need someone to help me. I do have confidence that they can offer therapy or support though, so I am not afraid to keep moving forward, searching for clarity.

I belong to a FB group for parents of children with sensory issues, and one thing I read a lot about it the struggles which so many children have in schools. It is truly heart breaking how many children suffer because of being forced into system that doesn’t work even for neurotypical children because of their differences. Nevermind, the education itself.. but just the way people are, children and adults alike. 

On the other hand, some days I question my own sanity and ability to cope not only with special needs, but any of my kids. I try, but I also have problems, and I just feel so alone, trying to give them a life that feels so unrealistic at times.

Then I remember how I felt growing up, and in school especially. I refuse to allow my son in particular, to be a part of it until he is more mature and has a chance to grow and understand. I do think we have to protect them as long as possible.

So now… just drifting in anxiety and doubts… wondering what is and what is not and how to get to a place of solutions and away from conflict and confusion and instability.  Trying to hold on, day to day, when really, you just want to vomit from sea sickness … holding on for dear life of course, because really, is there another option?

One of those days

I had a conversation last year with a sister who was suffering from infertility. Actually, she is quite young Mashaa Allah, but most young couples (especially the wife) start worrying after 6 months of not getting pregnant. It is almost something normal these days, it seems, to have problems conceiving. Since suffering myself with this issue, I have met many, many sisters in the same situation. I’d say the biggest thing I have learned because of it, is that, most of our problems are temporary. And even if there comes a resolution, swiftly or staggering, before barely tasting relief, there will come another kind of difficulty. I suffered from infertility for over 4 years, and when I finally got pregnant, after a few short months, my husband remarried. Another year and a bit, my mom died. And the tests in dealing with the children – that is daily. I am not ungrateful at all. What I am is realistic. What I have learned, is that everything we feel we can’t handle or that won’t end. It does. It changes. Life changes. We change. 

Before getting pregnant with the twins, I felt a change. I had accepted it. I didn’t even want the IVF, but my husband did. So we did. What I said to that sister, may or may not have helped her. We have to be willing to listen and understand. There were times in my journey that I didn’t. But I told her, if she wanted to find out her difficulties, I knew a good doctor. And if she didnt, no problem. The main thing is, to understand we all have exams. We all have, at times, heart breaking difficulties. But Allah is there. Others, with more experience are there. We have to push forward, seeking answers if we need them. Or seeking calm, if we need it. But don’t surrender. Don’t give up. Because if not this problem, it would be something else. Like me, I told her. There were days I didn’t want to get out of bed because I felt like I had no purpose without children. I grew up, dreaming of a whole family; and felt at times, that might never be the case. Fast forward a few years and yes, all my dreams came true. But my mother has died. My husband has another wife. My son could have special needs. Some days, I even wonder if my marriage will survive anymore. Some days now, I wonder how I will face all that is required of me. So, if you feel like you need answers, great. If you want to put energy into fertility treatments. Go for it. And if you don’t also, no problem. But find what you need to do and do it, and don’t forget for a minute how relative and subjective it is in the scheme of it all. Whatever we feel now, it doesn’t last. Even if you feel your heart will be crushed, it won’t. Especially not if you have faith. And we have to remember the exams will not finish until we die. So even when we get whatever we dreamed of, it doesn’t make everything perfect for very long. So, the trick is to be grateful no matter what. Feel what you feel, that’s okay. You are human. Then, move forward. Even if you don’t get pregnant, it may feel like the pain will never end.. and a part of it never does.. but you can learn to live with it too, and embrace it, let it be a part of you. Study, travel, work.. whatever it takes.. just keep moving.

I often think about that experience, and I remember how much it hurt me at the time, how empty I felt. And today, I have my babies, I have numerous other gifts, I cannot express how blessed I feel. But, I do still struggle a lot on many levels. Maybe that is my jihad. However, I never lose sight of how things can, and do change, for better or worse, Allah only knows. 

I  feel like “one of those days”is becoming a frequent occurence.  I keep reminding myself of all I have have been through, how I felt during each difficulty, and after. I try to be positive in light of it all, because I know for a fact thst none of it truly lasts. And even if my son had special needs, alhumdullah he is healthy and clever and strong. But what we are going through is unchartered territory. It is like sailing rocky waters, every single day. The ease is few and far between. I’m struggling to hold it together. I’m out of ideas. I feel like everything I do with him is wrong, like it’s impossble to get him to listen or comply. I feel like I am running uphill all the time and frankly, I’m exhausted. I’m praying that this assessment guides us to a new direction because I feel like the whole family is suffering. I feel like we are out of control, and the one who should have it together and be ever compassionate and loving and supportive… well, what happens if she has no idea where to guide the family?  What if she is only leading everyone into murkier water? Then what ?

Meetings

We went previously to a local psychiatric health resort and met an Egyptian doctor, apparently that held a PhD. If you know me, you know I don’t hold a lot of Egyptian education in high esteem anyway, but with good experience, I hoped that she would be helpful. We sat with her for maybe 40 minutes while my son circled the room touching everything and asking many questions. She seemed knowledgeable. I felt mostly comfortable. She told us we would get an assessment and to make an appointment. We did. Later that day, some things she said sat with me. I obsessed over her words. I obsessed over the assessment that should come and all the ways in which they would get it wrong. Firstly, she said she thought he probably didn’t have aspergers because he was “too social.” I know autistic individuals have issues relating socially and this was my concern as well, that he was “too social”, so initially I felt if she had a similar opinion to me, then why did I feel so bothered ? Second, the assessment would take 2 hours, in one day. I kept thinking over and over how could they properly determine if my son has aspergers while having a one time assessment with an adult ? I felt in all likely they might do exactly what she hinted at… diagnose him with ADHD which, according to her was easily treatable (probably by drugging him because as far as I know its not a simple task). At any rate she mentioned as well that it wasn’t a big deal and many kids have it these days. All these things swirled in my mind and ate at me for days. Then the hospital called to cancel the assessment and said they would reschedule, which they apparently forgot. Which was fine, because I decided to go with a more well known centre, albeit a lot more expensive.

In this next meeting, I felt that I was asked many appropriate questions and that their system was more logical. They may assess him over numerous visits if required as well as let him play with other children to observe him. They didn’t meet my son at the time, and I felt that was smart, to talk about the child while he wasn’t present. I have to wait a few weeks for the assessment but since deciding to go here I have felt a lot more relaxed, that I chose the best option for him and that we may get some answers and a path toward some help for him, and our family.

It couldn’t have come at a better time. I no longer have any doubts we need this. His general demeanor these days is angry, irritable and lashing out. Our family is under great stress, and I can only imagine how all this affects him long term. I’ve lost hope in my own abilities to cope or help him. I want to be his mom for one day, not a therapist. I want to enjoy my child for one day and not be called names or screamed at. I can’t remember the last time we enjoyed anything without multiple meltdowns over nothing. I know it isn’t normal to react this way all the time. And I am not sure how to help anymore. I’m at a loss, and feel we were guided to this place. I only pray that it opens doors for him, and for our family to thrive once again .. to feel there is support, guidance and healing inshaa Allah. To feel he is whole, that we are all whole, and that things start to make sense once again. I know that is a lot to expect. But for the first time in years, I have hope that we might gets answers and that he might find some direction. Allah only know the best… we rely on Him always.

Till next time..

The Problem with Psychology

Psychology. I have a lot of experience here, actually. And this is the main reason I told myself I didn’t need an assessment for my son. Whatever they tell me, I believe it is largely subjective, even though they have assessments tests and all, you can easily fall into numerous categories. Many of us can. Its happened to me before actually. There are some diseases that are more clear. Perhaps, schizophrenia or any condition where someone has a clear psychological break. Then again, you hear about that happening too. Doctors rush to diagnosis and miss a growing tumor in the brain, for example. Sometimes you just see what you want to see. What you believe, or have experience with. And that is what led me to seek a diagnosis for him too. Because of my experience with autism, I’m afraid I see autism. I looked at my son, 9 months old, bashing his head into the floor and I was on full alert. He has always been hypersensitive. He cried all the time. As he grew, some things got better but it never got easier. Even his self aggression comes and goes. I basically feel he cycles through behaviors. Now he repeats after you when you tell him to stop doing things. He also has a knack for repeating phrases, inflection and all. Lately he has hypersensitivity to smell. He doesn’t like the way his sister smells, or the scent of an open tube of toothpaste bothers him. You see where I’m going with this ? If you know about ASD then you could see my concern. Most people would just think he is naughty or strange but I see something else. 

Alhumdullah he is mostly well developed except minor fine motor difficulties. I don’t see significant speech issues either, except for a difficulty in using pronouns which could be normal at his age. The problems we have are related to high anxiety, anger, easily frustrates.. mostly you feel you are walking a mine field with him. And eventually someone gets set off. Usually him. At least 10 to 20 times a day. It never fails. Another reason to get diagnosed.. to get help.

I don’t believe a large majority of doctors are helpful or skilled. Here especially, but even in the West. I had gall stones for example, at the age of 12, and doctors couldn’t figure it out. They kept telling me it was gas. Research my autoimmune disease as well… all doctors treat the hypothyroidism aspect and never consider the cause. How to treat it… do they read about it? Listen to their patients? Generally, no. Psychology of course is even worse. So, my point.. how can I get help if I don’t trust them? Well, I don’t trust myself 100 % either, I am not a doctor of course. I also need support. Advice. Opinions. New ideas. People just don’t get my problem. People who don’t know us, definitely judge him as naughty and me as a bad parent. Those who do, say it is normal or it is biological or its nothing. Before considering an ADHD diagnosis I have to admit I didn’t completely believe in it. Or in its severity. I felt it was caused biologically perhaps with issues related to the life we now lead and the foods we eat. That could still be the case, but with Musa, I believe it is.something he’s always had, whatever it is. He has always been this way, or at least since his stint in the NICU. So it could be whatever caused his hypoglycemia, or the time spent in the incubator untouched as they do it here, led to this. Allah only knows.

My problem then with psychology, is that it doesn’t give you definitive answers. Now, the doctors want to assess between aspergers and ADHD but I won’t feel confident in the result. I suspect I may get other diagnoses at another place, and really I want to know if its aspergers or not. I want to know because it’s a different issue, and so many people get diagnosed with one disorder only to be “correctly diagnosed” or maybe just differently diagnosed later. 

So back to the why. Why get diagnosed if I don’t feel its trustworthy? Yes, well, to get ideas. Brainstorm. Support. Sometimes you get good information from doctors that can lead to something else. I also worried that if it were ASD ( high functioning) that he may feel different later in life and need to understand his difficulties.

My first son was assessed once too. The doctor said there was a good probability of ADD non hyper, and high anxiety. Till now that diagnosis is pretty accurate. I don’t know if it changes things or not. At that time, it simply meant a.license to drug him which we tried for a short time, not completely commiting because of all the adverse reactions. Clearly knowing and recognizing our issues can only be a strength if we use it with wisdom. Being ignorant might be easier, but it isn’t more beneficial, surely.

And we will see. He is who he is regardless. What I know is that we have been struggling for a long time, and I feel confidant now he won’t grow out of it, he needs help adjusting to everything, and life is very hard for him, and on the family as well. So, here we go. Lets see what they say. It can’t really hurt.

Until next time..