Will it ever be easy?
This question crosses my mind almost every day.. I used to tell myself when Tala starts standing up my life will be a little bit easier, when she walks life will be easier.. and so on.. I always think that every milestone she reaches life will be easier just to discover that as she grows up her needs grow with her and there's always a high bar that's really difficult to reach.. and living in a country where there's minimal help with challenged kids makes the bar seem unreachable.. it makes me question my strength.. my abilities.. it makes me feel guilty that I'm not working hard enough.. it makes me pissed off at people who make comments like "thank God she's not as bad as it can be"..
will it ever be easier?
To Find a nursery that will accept my child, a nursery that's ready to go the extra mile to include my child, to find a school that will tell me " of course, your child deserves a fair chance for education like all other kids", to find a facility that will not rip me off to help my child, to find someone who would help in educating parents on how to deal with their challenged kid to get the best out of him, to find a doctor who would understand my frustration and take it easy on me and give his time to explain to me and walk me through my child's prognosis..
will it ever be easier?
To see my child rejected from nurseries and schools just because there's no one to sit next to her? Because the school can't provide a shadow teacher to help my child? To teach me how can I help my child?
Will it ever be easier?
To see parents take their kids away from my child just because she looks different or acts differently?
Will it ever get easier? To feel like I'm at war with time.. I need to beat time and get my child to the place that others think she's supposed to be just to be accepted?
To go out and not find any place that's designed to accommodate disabilities in any kind?
To find medication needed by my child easily and with a reasonable price?
To find materials that she needs to perform certain therapies?
I'm not writing this post to get any kind of sympathy, I don't need it, I need to see change..
 I'm just giving you a piece of any parent of a challenged kid's mind so the next time you decide to cast away the child cause you're too lazy to think outside the box and find a solution to help the parent and the kid, you remember this post.. you remember that you are privileged not because you are so smart but because you just got lucky.. you could've been easily in this parents shoes but you got lucky.. thank God for that and start helping others.
Instead of using a child's disability as an excuse to cast him aside, use it to challenge yourself.. how can you help? How can you make it work? Instead of taking the easy way out of " I'm sorry I'm not equipped to take the responsibility"
A parent of a challenged kid has it as hard as it can be.. there's no need to make it harder..

Change your attitude, there's always a way!!! 

Our Journey with rehabilitation:

So now we know Tala’s condition.. it sunk in.. now we need to swallow all the pain and all the sense of how unfair the situation is and get up and take action..

Except that “where should we start?” this area is very shady and dark and basically a taboo..

We started by calling Dr Nasser Gamal, Tala’s paediatrician who advised us to contact a genetics doctor..

At this point I didn’t know what to ask, Tala’s case has no name so I didn’t even know what to look for on the internet. I tried reading about chromosome 9 but I all I can find is a condition called trisomy, which means that chromosome 9 has three arms instead of 2 which was not Tala’s case. Tala had two arms but one of them had genes deleted completely and genes duplicated..

Let me explain this as simple as possible.. each person has 46 chromosomes in every single cell of your body. Each chromosome is made of two arms.. every arm carries very specific genes.. Genes are like a computer code, they have to be very very accurate and specific for each person. These genes control every single detail about you.. from how you chew your food to the color of your eyes, to how you control your movements.. every single thing that makes you who you are.. and just like any computer code, one single change in this code will mess things up.. so having extra genes or gene deletion affects your whole system.. depending on which genes are duplicated or deleted, certain areas in development are affected..

With Tala she had both, genes duplicated and genes deleted..

We went to Dr Ahmed Darwish (genetics doctor) who advised us to take one step  at a time a don’t jump to conclusions and never ever compare Tala to other kids.. compare her progress to where she was and where she is now..

This sounds easy but it’s not.. It took a lot of practice to stop comparing her to others.. this was four years ago and I’m practicing..

Then he told us that different genetic disorders have similar symptoms but to different extents so he advised we read about other cases and observe Tala very closely..

We started our rehabilitation centers hunt..

Searched the internet, asked doctors where to go and there were very limited options..

Now here is my advice to you from my experience with all the therapies we’ve been through..

1)   Keep a journal about your child and write in it every single detail about your child.. everything you observe no matter how trivial it is..

2)   Keep track of the dates, when did you start therapy, when did you run labs and staple the results..

3)   Download from the internet the milestone developments checklist and follow your child’s development

4)   Attend therapies and ask doctors how you can help your child at home.. you can even videotape yourself at home working with your child and show it to your therapists and see if you’re working correctly or not..

5)   Read a lot about your child’s case, find blogs of mothers with similar cases and see what they did.. learning from mothers is the best way to learn..

6)   Try to buy books about games and activities that you can do at home..

7)   Take your child out and play together.. arrange play dates with your friends children.. people who know your child’s case will learn with you how to deal with your child..

8)   Take short breaks from all the therapies and be a mother.. just a loving, caring mother who loves her child the way she is.. feeling loved and accepted by you is the most important thing that will push your child forward.

9)   Take pictures and videos with dates of your child doing new things so you can go back to these videos and see how he’s become different..

10)                 Ask for help when you need it.

5 years ago I watched a movie called 127 hours, it’s based on a true story of a mountaineer who got trapped in the mountains when a boulder falls on his arm and he was stuck there for 5 days..

In the movie James Franco said something that stuck in my mind ever since. He said “this rock has been here waiting for me since I was born and everything in my life has lead me to it, lead me to this moment” I was fascinated by this epiphany and it came to my mind when I had Tala.. when it was really dark moments and everything seemed impossible.. this thought popped in my mind..

Tala has been waiting for me since I was born.. she was a floating soul waiting for me to grow up and have her.. and everything I went through in my life has lead me and prepared me to having her..

Then I went deeper into this thought..

I thought of my mom.. How she raised us.. my mom taught me independence since I was a child.. If I had a problem at school, she would sit and talk to me and advise me but she never took matters in her hand. She guided me to handle my own problems myself..

She encouraged me to enroll in any school performance and stand on stage and talk confidently and loudly and clearly. She used to practice with me how will I stand in front of the whole school and say the morning word without shaking..

My mom encouraged me to work when I was in high school..

My mom encouraged me to read a lot, if I want to know about something, then go to the library look for a book that covers this subject and read about it..

My mom is the biggest reason I’m prepared to handle Tala.. because I learnt ever since I was in grade 1 to take matters in my own hands.. I learnt to find a way to solve my problems.. I learnt not to be scared to ask and face anything that comes in my way.

I learnt to look up information and research.. not only depend on what people tell me and this made a world of difference with Tala.

My mom had her share of challenges herself, I watched her rise above her problems and be the fun, loving mother she is.. not only that, she is successful at her work as well.. So I too will rise above Talas challenges and have fun with her and love her and be successful at my job..

Then I went to college, faculty of pharmacy. Back then I knew I wanted to be a teacher, it’s my passion ever since I can remember.. so a lot of people asked me “why trouble yourself in pharmacy if you want to be a teacher?”

Back then, my answer was I loved science and specifically chemistry.. which wasn’t really a satisfying answer.. Now I know why I went to faculty of pharmacy.. I have a slight medical background, I used to read a lot of books about medicine which made it easier for me to understand medical terms used by Talas doctors.. I know how to ask them questions.. when I read an article about genetics or any medical journal that will help me in understanding Talas case more, it’s easy for me..

I work as a teacher now and sometimes people wonder why leave pharmacy and be a teacher.. being a teacher taught me patience, taught me that there a million ways to reach a persons mind. It helped me a lot when I work with Tala.. I have the capacity to handle her slow ability to grasp certain concepts, cause I deal with that everyday with my students..

Being a teacher taught me scheduling and managing time and any mother needs these skills with her kids..

Then I took a homeopathy course, which a holistic approach of alternative medicine.. this course taught me that each person is unique in his own way and that you have to deal with every persons symptoms like it’s his own set of symptoms.. don’t put your expectations or your beliefs or what you learnt into the patients experience.. listen to what he has to say only..

This made me look at Tala the same way.. she is unique.. she is literally unique, she’s the only reported case in Egypt and number 7 in the world with this genetic disorder.. but I learnt that I don’t put my expectations or my vision of the perfect child on her.. I learnt to see her perfect traits and enrich them.. I learnt to see her the way she is, not the way I want her to be..

It’s a lot of work and not a walk in the park definitely.. and there a lot of days when I feel like I’m in a whirlpool being sucked down and not able to breathe.. but then, they are just days that pass by like any other day.. Life has to go on and the earth will never stop turning.. so enjoy your ride while you’re on it because your whole life has lead you to where you are now.. so be sure that you are well prepared to handle whatever comes your way.. and allowing yourself to break down and cry and feel miserable is part of handling it.. just be sure to get back up and ride the wave to the top again..

This is how I saw my life and how it took me to my beautiful Tala who was hanging around the corner the whole time waiting for me very patiently.. I encourage everyone to look back at their life and I’m sure you will discover a lot about yourself that you didn’t know or maybe you knew but didn’t really realize it at the time..

Have a wonderful dayJ

Problems challenged kids and their parents face in Egypt

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.

A) 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 centers 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 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 and 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..

B) I noticed something that really gets on my nerves. Apparently rehabilitation centers don’t like each other and if a therapist used to work somewhere and left, then it’s war between him and the center.. 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..

C) 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 therapies:

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 time lazy 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 form 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?”

D) Support groups and training centers

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 sympathizing 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 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 questions on your mind as you’re reading or watching a video and no one will answer them..

Of course it helps a lot 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!!

E) 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?

F) 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..

G) 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 and 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..