Having a kid with special needs requires extra attention and care from parents. In Egypt the struggle is real, where there is lack of information and help provided to both the parents and their kids. Rola Moemen gives us her insight on what parents here face when they try to give their children the best care they deserve, it’s not easy and it’s challenging:
This article is not only about us and Tala, these are problems that I heard from other parents as well. They are not in order of importance as I believe they are all equally important.
Lack of information
I believe that one of the biggest problems we face in Egypt is the lack of information, starting from doctors, schools, nurseries, rehabilitation centers until the parents themselves. There’s no one to tell you or guide you where to start or what to do or where to go. It’s like a mission impossible in Egypt to get proper information that can draw even a rough map to help you on your journey.
It’s a trial and error, you try this doctor and you follow your gut, taking an informative decision from someone you trust is extremely rare.
There are no support groups, no TV shows, no parents training centres that provide parents with the tools they need to help their kids. Challenged kids need parents who understand their limitations and know how to deal with it, parents who know that a tantrum is not necessarily misbehaving it’s just that the child can’t tolerate that kind of noise, for example. When we don’t know what’s going on in our child’s mind or body, how can we help him develop?
There are a million TV shows about health and they invite doctors to talk about how to stay healthy, how to lose weight and how to lift your face, not ONE show about challenged kids.
We need to know a lot of things, I will list a view just to make my point a little more clear:
1- How to identify our child’s disability?
2- What’s the first thing to do when you find out?
3- What are the different kinds of behavior to expect and how to deal with it?
4- Are there special tests we should run periodically?
5- Where are good rehabilitation centers and how can I decide that they are really good?
6- What should I observe in my child?
7- What’s the normal development pace so I can compare and find out what my child needs to work on?
And it goes on and on and on and no one is there is no one to answer you..
Rehabilitation Centres and their conflicts
I also noticed something that really gets on my nerves. Apparently rehabilitation centres don’t like each other and if a therapist used to work somewhere and left, then it’s war between him/her and the centre. Our kids are the ones who pay the price for this ridiculous behavior.. So if I say in one place that I take Tala to X, they start telling me how horrible they are and they will do no progress with my child and vice versa, and they put me in a whirlpool that I can’t get out of because the thought will always haunt me “What if they are right? What if the other place is better?” Again, the lack of knowledge will put you under the mercy of these people..
Finding all therapies your child needs in the same place or at least close to each other
A child with chromosomal issue will probably need the following:
1- Physical Therapy
2- Speech therapy
3- Occupational therapy
4- Oral motor therapy
5- Cognitive skills development
6- Sensory processing
7- Vision therapy and much more than that
Imagine that every facility provides some of these therapies but not the rest, so now you have to take your child to several places, they aren’t close to each other and most probably not all of them will be close to where you live, you will find yourself wasting all day in traffic and in therapies.
You won’t have time for yourself, your other children, your husband and you won’t find time to spend normal quality time with your child who needs to feel that he’s a kid. Instead of running and playing and spending some lazy time on the couch watching TV, he’s spending his time with total strangers or in the car.
There aren’t enough facilities in different areas, I saw parents who used to come all the way from south of Egypt just to attend a therapy session that lasts two hours, they wake up 4 am, take the train for 6 hours to attend a session, then take the train again for another 6 hours and do it all over again in a couple of days, because where they live there’s no help. How are they supposed to be productive people? A mom told me once “I feel that all the therapy my son does here goes to waste in the train ride, I’m the normal adult and I go back home all my muscles aching and can’t get out of bed, what about him?”
Support groups and training centres
I’m stressing again on this point because it’s nerve wrecking for the parents to have a challenged kid. It can get the worst out of you if it’s not handled correctly, it can destroy families, it can affect the siblings. Parents need to know how to deal with the child, how to deal with the brothers and sisters, how to channel their frustration to productive solutions instead of taking out on the child or on themselves, if the parent is unhappy and stressed, the child is unhappy and stressed.
Support groups allow the parents to release the pressure they’re under, talk about their feelings with someone they can relate to, someone who understands perfectly what they’re talking about, not just sympathising with them. It gives us a chance to share experiences and compare notes.
It’s the parents who spend most of their time with the child, it’s the parents who KNOW what their child likes and dislikes, this is a very powerful tool, why not train the parent to do activities that will help the child’s development as long as it’s not a medical or a technical activity that needs a specialist, a parent will be able to do it much better than the therapist. Because I can pick the time when my child is in a good mood and ready to work. Some times I used to take Tala to therapy and she was in no mood to work and this session was gone to waste.
Of course you might think that the internet is available so why not use it to educate yourself? Well, not everyone has access to the internet and every child is unique with his own set of symptoms and you will have a million question on your mind as you’re reading or watching a video and no one will answer them. Definitely the internet helps I won’t deny, but I’m not talking here about myself only, I’m talking about every mother in Egypt, every social class, every level of education, you can’t ask someone who doesn’t even have water in their homes to search the internet!!
Finding a place to take your child to play
As much as our children need the tons of therapies they do every day, they need play time. Play time helps a lot in development, it helps also the psychological aspect.
Playtime makes you feel human again, makes your heart melt when you see your child laughing and having a good time, it gives you energy to start another day of fighting, makes you survive through all the fear you have every second.
There are no places that have swings specially designed for challenged kids, or have ramps, at least. There are very little number of places that will even allow a challenged kid to enter.
This again goes back to problem number 1, nobody knows how to handle a challenged kid, simply because we never hear anything about them, we never see them so why bother and do anything for them?
Finding a nursery or school..
This is one of my biggest problems so far. I want my child to be accepted. Every time I went to a nursery and they told me they can’t accept Tala, my heart was broken, feeling that your child is being rejected over and over again for no fault of hers or yours is devastating.
I felt like I’m pushing a wall. These were some of the reasons I heard why they can’t accept Tala:
1- If she can’t walk, other kids will ask why? And we don’t know what to tell them (go back to problem 1)
2- We can’t take the responsibility of any injuries because she can’t walk or talk.
3- There’s no one to carry her around.
4- We don’t have chairs or swings with belts to help support her.
To me, these are all ridiculous reasons, and I still blame it on illiteracy.
As for schools,
You will pay double or triple what a normal child will pay but you have to provide a shadow teacher, and your child must talk first.
What if my child never talks, but she can excel in other aspects?
What if she learnt how to write and can express herself then through writing? What does it mean that you are a school that has a disabled section but you can’t take a child who doesn’t talk? Isn’t this a kind of disability? And if I’m paying triple what other parents are, why am I the one providing the shadow teacher?
And there was another school, they said ok we will take her but you have to accept that she will not meet all of the objectives, if we have this understanding, then ok we will take her.
I felt that they won’t fight for my daughter, they will use her disability as an excuse for their failure, they won’t advocate for her.
Sports, art, music, crafts and other activities..
Is there a sporting club that provides trainers who can work with challenged kids? Are there places that provide other activities for those kids? I guess you know the answer by now…NO
Or to be fair, very limited.
To me, and I’m a teacher, I believe that excelling in education is not the only form of success. More importantly I believe that sports and art and music and other forms of activities is part of education.
If my child can’t workout a mathematical equation but plays the piano, she’s successful.
God creates a person to LIVE, we are built to survive. Every cell in our body is programmed to keep us alive as much as possible, and yet we insist on burying these kids alive. Nothing is worse than living like the dead, we provide nothing for these kids, there’s no outlet for them, there’s no where to go, they have a lot of energy and love and they’re still breathing for God’s sake. We decide that they just stay at home cause they’re a waste of space, they stay at home because we don’t want to take an extra step to provide for them. Doctors around the world are finding cures for deadly diseases to keep people alive and breathing and we are failing to simply make ramps in malls and in the street, we are failing to make campaigns to spread awareness about these kids, we are failing them every day in every aspect.
I’m sure if these kids can speak, they will say things that will makes us all ashamed of ourselves.
A mother told me once her child went back home from physical therapy and he was in his room looking at his legs and talking to them, he said the following; “ I’m mad at you cause you are there and you refuse to work, if you exist then you have to do something,” an 8 year old child said it all in a very simple sentence…“If you exist then you have to do something”
We are here and we are refusing to work, we are consciously making a decision everyday to do nothing for these children.
We are not teaching our kids compassion, and tolerating differences and helping a person who might be weaker than us in some aspects but nonetheless learning from them.
We should do a lot more to integrate these kids on our society and trust me, it’s us who will benefit from this inclusion, we will learn a lot from them.