days

Our day starts out early. My kids are usually up around sunrise. They eat cereal, then the girls play while my son puts on his eye patch and plays Wii. It’s the one thing I don’t regulate too much for him. He isn’t overwhelmed by it, and usually gets bored after sometime. It’s a relaxing tool for him, and it gives me some time to drink my coffee and wake up. I am actually not a morning person. Before kids, my best sleep  was after Fajr prayer so that first hour after sunrise, I need time.

Around 8, we start our excercise routine. It should be daily. He has excercises to help integrate his retained reflexes. Kinda looks like Yoga, so definitely not a waste of time. He has other exercises from the Ot, such as a ball pass that helps him cross his midline, push ups and sit ups to strengthen his core. Jumping jacks, obstacle course, bean bag toss.. we randomize these to make it less boring and then he gets up to 5 minutes on the tablet. The tablet is his main reinforcer, so it is used as a reward plus it helps him in transitions. He also needs frequent breaks, so during study time we use a timer and set it for 2 minutes and he easily gives the tablet back and returns to work. The ABA therapist recommended such strategies, and while he isn’t actually getting much therapy I do like such strategies as it is the only thing that works. Before he would not study at all without screaming and fighting. And not just studying, but his excercises, getting dressed, basically any demand on him. His sister on the other hand, is intrinsically motivated, and we give her time on the tablet as a reward but just to be fair. She actually loves to study and excel mashaa Allah.

After excercise, I play the Quran in the background to help with their memorization. They do fine and visual motor activities such as lacing, beading, tangrams, and here I also integrate more of his OT goals as he has weakness in both. We also usually do this with his eye patch on, so it is more challenging and if there will be any gain this should help, although I believe it is not unfortunately. We shall see soon. The kids now break to have fruit and sandwich and free play. 

4 days a week, the Quran and Arabic teacher comes. She is very good adapting to my kids needs. They have an excellent foundation as well, and my main goal it for them to build on it. Very soon we will have a party inshaAllah when they finish their first Juz mashaa Allah!

Fridays are an “off” day with the exception of morning and afternoon activities and excercises. They have swimming as well on weekends.

English and math are my priorities, most afternoons with simple science and social studies concepts as well as daily calendar and weather. They have lots of free time which the girls use effectively and my son has begun to interact in their games. He complains a lot he doesn’t know what to do, but when I leave him, he will often join now.

Late afternoon, I have Arabic and kids watch a movie for an hour. Then we have puzzles and board game time and wind down with stories. I believe this schedule is helping us all a lot, and I feel it is fun, relaxing and motivating for us all.

I worry a lot about my choices for them, such as curriculum or their future since homeschooling isnt actually accepted here at all. But, I would worry a lot more if they were in school. For both of them, for so many reasons. I hope Allah guides me to the best decisions always, and allows me to continue to provide a peaceful and nurturing environment for us all to thrive.

Until next time..

thoughts

Perhaps my autoimmune disease is acting up again, or my thyroid is out of whack because I am starting to feel chronically tired. It could also be that I need to be “on” from 6 30 am till practically 7 at night. While homeschooling itself isn’t difficult, or taking up huge amounts of time, it is exhausting needing to constantly be a monitor or referee. The girls do play together nicely in their down time, and my son will join them occasionally but most of the time needs assitance and encouragement. He does play Wii, computer games and watch tv but other than that there is very little he is interested in. He will study but complains he is tired, and frankly, it is obvious that some days it is hard. He is clever mashaa Allah but simply not motivated in the same way to learn and play as his siblings or NT children. We typically use electronic breaks in between tasks to encourage him to do his less preferred activities. I hope in time he will find learning and playing easier or at least put up less of a fight.

I have read many discussions regarding  a form of therapy that is frowned upon, such as ABA.  As a therapist in another life, I do remember my first experience with Applied Behavior Analysis.  We were not allowed to show emotion at all, except when the child gave a correct response, we would give high five and cheers, but it was not allowed to hug and kiss the child for example.  It was very clinical, and much like the complaints that some autistic people have reported, likely a cause for PTSD.   On the other hand, I have worked in other places, that applied basic principles of ABA but in a more child friendly and less clinical feeling environment.  However, there is still the use of aversives for some children who, as an example, hair pull.  We would apply foul tasting syrups so the child would pair the action with the bad taste, and hopefully stop doing it.  It is somewhat the same idea as applying certain nail gels to your nails to prevent you from nail biting.  This place I worked at did not use things such as electric shocks, but I have heard of that happening.  So, you can see how ABA might get a bad name.  Also, there is a lot of emphasis on behaving normally and “less  autistic,” in the case that he might have stims like hand flapping etc.  We would frequently say “quiet hands” and put his hands down.  Now, I have learned from watching grown autistics describe how they need to stim to self regulate.  I understand this to some degree, but also when stims prevent a child from learning perhaps we have to try to give them alternatives.  I had a child that constantly jumped out of his chair and flapped his arms.  After sometime working with him, he sat very nicely.  I believe he needed other things to do with his hands and body.  If he was left that way, it is possible he would not be able to learn, just as a child might constantly run away from work.  So, I can see how we should try to redirect children but not be anal about “quiet hands”.    I guess my point is that, as far as I can see, ABA has many good and proven methods to help behavioral issues that might arise.  I do not really see many other therapies that help children with difficult behaviors.  But I dislike intense ABA programs, as it does feel like brain washing and making the child appear more “normal” and does not take into consideration other things that might help such as occupational and speech therapies.  The ABA therapist is also primarily responsible for those but with the same intense discrete trial teaching methods.  Children need moderation, they need outlets, they need balance.  ABA is like a boot camp to change him completely as quickly as possible.

As a parent of a high functioning child, I admit I use methods of ABA, but I do not do discrete trial teaching.  We reward good behavor and I consult a BcABA on problem behaviors.  For us, it is his hitting and saying negative things.  Everything is too hard and bad, and he always responds first by hitting when he is overwhelmed.  If he is approaching melt down, he will also hit himself or break things.  These things are maladaptive and unacceptable, and I have tried everything to help him.  But in the end, it decreased primarily when we consulted with the therapist and started a Manding program. The idea is that although he has a great vocabulary he doesn’t know how to express his feelings and needs appropriately.  His reaction to hit is quicker than his brain to think of appropriate responses and mands.  Also, to decrease his negative language (always calling us names when we say no to anything), was mostly only reduced by completely ignoring the statements and rewarding him when he expresses himself more appropriately.  I fell into a trap of constantly engaging him whenever he wanted to complain and try to give him rational explanations which made it worse.  The therapist’s advice helps me to see that what I do can change what he does.  I consult with her only 1 time per week and she also works with the twins together on social and turn taking games and making requests from each other since this is a huge problem in our house.   So, I believe ABA has great ideas and programs, but perhaps the implementation in the schools is incorrect.

There is a  huge divide between some parents wanting their children to be normal and autistics who find this offensive.  As a parent, I do not have any desire for any of my children to fit in or be “normal”.  I believe his autism is like a super power, that he may be able to come up with new ideas or solutions in society that may come about simply because his brain is wired differently.  To me, this is something wonderful and amazing.  However, he does have many struggles that we cannot deny.  And this is the part most of us want to change, or help.  I understand him often, how he feels, as I feel the same way sometimes, to a lesser degree. I am not sure if it is because I am different or because of my  experiences, but I am blessed that I can relate to him at times, and see his struggles and as a team, we are all trying to be proactive and work together.

Another issue I have seen discussed between NT parents and the autistic community is the use of functioning levels in an autism diagnosis.  It appears that the main argument is trying to label something, namely a level of disability, that is often subjective. For example, minimizing the struggle that so called high functioning autistics might have. But, from working with a hundred children with “classical” autism, to me, there is a difference between them and my son. However, I am not able to tell how the children I have worked with feel, perhaps they think and feel like my son but are overwhelmed inside their bodies, who knows. But most of those children have difficulties reaching programs in pre academic levels, and that does seem to show they are lower functioning. My son, is easily able to keep up with his twin or even surpass her, except that he has severe issues in following directions or doing things he finds unmotivating.  I believe he can have a family of his own, and a job, and complete college, whereas most of the children I worked with will need support throughout their lives.  I don’t see how we can’t try to differentiate between the two, but then again, perhaps it will be better to just say autism.  In the beginning it was hard for me to say autistic, because of other people really.  If I tell them he has autism, they disagree or argue with me.  But clearly, when you work with him for sometime and see the intricate layers of his personality and abilities, he clearly is autistic.  So now that is what I say, and I can understand why the autistic community might be fighting for this change.  It can increase awareness that autism is in fact a spectrum, but unfortunately it will take quite some time for the general public to understand.

One last thing that stays in my mind, regarding this idea that autism is a spectrum relates to trying to understand where autism begins exactly.  I, for example, dislike eye contact, social interactions, find social responsibilities extremely taxing, have minor sensory issues, and can get overwhelmed to the point of a breakdown.  I havent been able to hold a job for more than a year because of these issues, and yet no one would say I have autism.  But, perhaps something in my genes led to his issues, or that combined with something else let to it.  At any rate, the point is, what makes someone labelled as autistic and another not.  Perhaps we all have some capacity to it, depending on circumstances in our life?  Or perhaps the increased push to normalize all people and fit them into boxes, has generated the divide?  I personally don’t believe that so-called “normal” society is really normal at all.  Even for “normal” people.  Whatever that means.  I never fit into school, and do not want it for my children, except as a temporary thing.  Similarly, this idea we have to follow certain paths before marriage and kids.  Why not get married young and have kids young for example?  This drive to force us into moulds is exhausting and damaging to all people, really. I support accepting people with autism, but moreso, I believe we need to stop believing in this falacy of “normal”. I know that is unrealistic to some degree, so instead I try to remember and instill in all my kids, to be the best we can be, to keep learning and growing, to help others and be useful in life, however that is, for them. To take care of and support each other in all periods, and guide others to do the same. Be true, as a Muslim, to care less about what others think, and keep marching forth in light and service. Most of it is a distraction anyway, so just keep moving and developing. Reardless. That, in itself, is a challenge sure, but it is the important one. Not being any kind of normal and definitely not fitting in and following the crowd. That to me, is death. If my kids do that, then I believe they will be successful in shaa Allah, all of them. And that is what matters to me.

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.