Settling in

There has been so much change this year subhanAllah. But, I do believe we are making progress. I have settled back into homeschooling, which I felt was calling me for sometime. I kept delaying it because of Arabic, and not wanting to put too much pressure on the kids, especially my son. Just the markez was enough for him, 4 hours per day and I am so proud of them really. It wasn’t always easy, the driving and a car that kept breaking but I feel we achieved a lot. I really wanted to continue but began to feel burn out when I had to drive a big distance daily including therapy and extra curricular activities.

The assessments and therapy are pricy, but I am extremely impressed on many aspects. Particularly with Occupational therapy. My son has core body weakness, visual and fine motor issues as well as retained reflexes. In fact, the reflexes which we have after birth are supposed to integrate amd when they don’t can lead to many issues such as hyperactivity, motor issues, sensory issues, hand eye co ordination, the list is lengthy. He has 3 retained reflexes and we have begun to do exercises to help. It is obvious in his writing, tracing, copying and behavior that there are significant issues and I hope that extra effort will help him overcome it. Especially considering we have also had little progress in his vision after cataract surgery. But knowing there are other possible causes brings some relief. We are transitioning his therapy to the home as well. As an experienced ABA therapist, I feel confidant we can continue in the home for now, and admittedly, it still blows my mind that after all the students I have had and loved, now, I have a son on the spectrum. A lot of people find it hard to understand why I dont send them to school, and moreover tell me he is “fine” and just needs a real school. But, after this first week finding our groove, I have my faith returned that we are doing the right thing. Besides, I am a creature of change and adventure, and I have no fear of sending them should the need arise. I believe the longer they can stay at home learning in a relatively stress free environment, the better off they will be. School has its time and place, but I dislike the power it has over our children and society, as if nothing else matters or compares. When in reality, it is simply one means to an end, a tool in the tool box of life and experiences. 

For now, we are doing ok. We have a path, we have tools. It is a good place to be.

pack, unpack

I had 5 suitcases packed. Less then 2 weeks to go. Spent a lot on new clothes. Kids were excited. Prepared the papers and photos for the embassy. I was ready. And then… plans changed. More worry. Not sure what to do.. cry? What about the kids ? Hold it together. Scream! And unpack… 2 days of endless reorganizing. Therapy. Fresh air. Relief. Khair.

Change and change and change

I am not sure if I mentioned that my husband is back in Nigeria. Well, he came back for a visit, coinciding with my eldest visiting from India. Then, my husband returned, and a couple weeks later so did my son. Since then I have noticed a spiral effect. My son seems extremely out of sorts. He was doing well for a couple months, and then became increasingly agitated, angry, lashing out, and over excitability. I also noticed a decline in his play skills. I have not been able to engage him in any functional activity. He even started horse back riding, which he loved for a couple weeks but now says that it makes him too tired. He has also started occupational therapy, but not at a demanding level. And he had a speech assessment. So, we have been trying to hold it together, but it is just not working. On top of that, things keep breaking and issues keep arising.

It is strange because I am now in the 9th level, and I really love my teacher. I also feel as if the language and expressions are really beginning to develop. I am tired, but I wanted to complete what I started. However, my breaking point was last night when I got a message from the manager at the kid’s school that they had to close suddenly due to a dispute with the landlord. I tried to get a nanny that we trusted, but she was busy. My husband said we could put them in a nearby daycare just for the remainder of the course, but I know my son could not tolerate another change. I intended to switch anyway to online learning because I felt that it was time to return to homeschooling. The kids are at an important stage where they are showing so much interest in various subjects and I couldn’t put it off any longer.  And, I also know how unlikely any daycare would be to adapt to my son, the way his school has tried to do, especially considering the chaos he seems to be feeling these days. No, the best thing for us all right now, is to stay home and try to regroup, and reduce the stress that we all have been feeling.

I am so proud of all my kids mashaa Allah. The little ones have made amazing gains in Quran and reading Arabic and understanding. They ask me to translate everything. It is important that we all continue, but not for it to be the main focus right now.

My husband has asked that we join him in Nigeria. I really wasn’t planning on it, but I remember how much we achieved last time and I believe it will actually be more stable for my son in particular. I have his goals from the assessments as well, so we can incorportate it into our studies. I was not expecting this detour at all, but I am happy because I believe it will be beneficial for us, and that is what really matters. 

Acceptance

I was pretty sure my son had a mild form of autism for some time. I had doubts some days, on his good days, but it became more obvious as he grew. Although for the most part, I did not see huge delays and because of this I waited for a diagnosis. I was relieved actually when the doctor told me it was autism. I didn’t grieve as some parents mentioned, because I was prepared for the result. I still worry a lot about him, but mostly because I know how the world is, and suffered a lot myself, so I feel extra protective of him now. The diagnosis, for me, actually made me feel stronger and calmer, except for my own weaknesses and fear of not being able to give him a life he deserves. I always second guess myself, and I suppose the diagnosis was a sign to me, to trust my instincts with him. I moved forward with the recommends therapies, to get a feel of what others would recommend. To see how professionals were thinking, as it has been 10 years since I worked in the field.

What I have seen till now, is that I need to continue what I am doing. I relate to him on many levels and have always tried to help ease him into things. I try to help others understand him, and help him understand the world. Since his diagnosis I feel closer to him, like he needs me, and so it has been imperative that I keep my own head together. I have been way too stressed for way too long on a number of things, and the realization has made me take steps that I have been avoiding for a long time.

I started taking a low dose medication for my own anxiety. I saw a psychiatrist. And while I still don’t think it is a long term solution and also tried therapy to which, I basically felt was silly, I do feel happy about my decision. I will continue short term with this, and see how it progresses while trying to pay attention to my triggers and keep my life as balanced as I possibly can. I take a lot of things too seriously and need to focus on my priorities, and living in the moment. I care a lot about a lot of things, and feel alive when I am achieving but it is utterly exhausting. Besides caring for all my little monkeys and trying to be all that they need me to be. But, now, I am more focused than ever on how to help us all be a cohesive unit, no one more important than the others. Each one has his needs, including me, and it is imperative to our health to take care of them, and stay in balance. I am happy and blessed, and feel good about where we all are right now, and for today at least, I am going to cherish that feeling.

What causes autism ?

One thing I have always thought, was that I understood a lot about my son since he was very small. If you read my early posts, I considered him a “high needs baby” because it was as though he felt things more than others. When he cried after waking from a nap, it was as though someone had pinched him hard in his sleep.  It was an ear piercing sound.  If you took him to ANY doctor, they would say gas, and I never thought it was gas. He never vomited, or seemed upset by food but he was the kind of baby that wanted to breastfeed all day long, or be held all day long. He had good eye contact with me, and when he laughed he was hysterical. He was exuberant. But, he was always so intense.

I will never stop thinking about his time in the NICU, and I believe firmly that what happened before or after led to these difficulties he has. Although they do not know what causes autism, in our case, it just seems logical. A day after was born and we left the hospital he turned blue, lost his ability to cry and suck. He was barely there. Turns out he had hypoglycemia, and till now they don’t know why. Either the cause of that, or the effects of hypogycemia led to his issues with his eye I am sure too. Anyway, to make matters worse, they put that newborn baby in a box basically, for 10 days. I went to visit, and realized that when he cried in that box, you couldn’t even hear him. They refused to let me hold him or breastfeed him. I sent pumped milk for him, but they kept trying to tell me my milk caused this. Well, I became enraged at all of this and demanded that my husband bring him to me, but we really did not have other options. This was just how it is done here, and a decent hospital compared to most. But, when you consider how he was later, you can imagine that if he were neglected or left to cry, or not given the care and comfort of his mother, surely this can lead to sensory issues and a strong fight or flight response. And this is how he always has been. He is easily stressed and anxious. There are a lot of other issues that make him stand out, but I believe in time he can overcome it, or at least cope with it, if we give him the opportunities he needs to lovingly grow into a unique individual and not force him into a box he doesn’t fit. For example, he asks very strange questions or says very strange things that lead me to think he doesn’t “get” many ideas right now. Things, that his twin can infer. Such as, that he is a boy and he will always be a boy. He will never be a girl, nor will he be a baby again. He asks a LOT of why questions, and his sister doesn’t. I thought that was normal, but most of these things he doesn’t grow out of. Like, I thought many of his issues would reduce over time, but they don’t and this is what prompted me to get his diagnosis. I waited for a long time, but after 3 and half to 4 I began to see he had a harder time with understanding the world. Also, the way he talks about dreams, and trying to get him to understand it is not real. He has very vivid dreams, about going into the wall, and lots of things happen there. Sometimes he sees lions or bad guys, sometimes not, but the way he describes it, I have no clue what he is really saying. None of these things are an issue to me. They simply show how his mind is different, and it requires us to try and understand him and help him cope. The things which are major issues, are his melt downs, and frustrations. He is extremely angry frequently and easily. He also gets overstimulated and is very sensitive to a lot of things. However, on his own, he is a different child than what you see with his sisters. He is A LOT calmer. He will get bored very easily and say he is tired when nothing is happening. He can’t really occupy himself for long like either of his sisters, even the 2 year old will play better and longer than him. He lives only for his cars – which he usually lines up and shoots them off – or technology of any kind, or physical activity. That’s it. I would also say his issues are increasingly becoming more complicated. And I am unsure of myself at times. I don’t want him treated badly as though he was a naughty child. I want to preserve his gifts and help him grow and develop into a well rounded adult. I do not want him to feel he has to hide who he is, but channel his energy in a productive way.. To manage and succeed in society as is necessary only, but not comply, lead blindly, following norms. Allah made him, and all my kids, special, with unique capabilities, strengths and weaknesses. Each is different, and none of them are less. They are my world, all of them, and I will help them in any way I can, and when I can’t, well, we will find a way, by the will and power of our Lord and the faculties he blessed us with, in Shaa Allah.

As for what causes, Autism, Allah only knows. I believe it is genetic with some kind of trigger. Or maybe, if the brain is “just that way” maybe he was born with it, just as children are born with other challenges or traits. I know he is what he was meant to be, and the ONLY thing I cry for is the ability to help him into being the best possible Muslim he can be. Not to make him any different, but for ME to help guide him as the Mother should.

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.