What does challenged kid really mean?
I always thought to myself what do people call challenged kids? There are several labels actually:
1- Disabled: I didn't really like this description.. because I've seen these kids having abilities that we don't have, so from their perspective we are disabled as well.. being disabled is very relative..every person has different abilities from others and this is what keeps harmony in life.. so if I can't do anything like climb a mountain, or play the piano or be a working mom, will society label me as disabled? I guess not.. then why call a child who can't walk disabled? He just can't walk like us.. that's all.. he does things differently, like we all do things differently.. a challenged kid might need to read the word 150 times to be able to understand it but in the end he will understand it.. he might need to practice walking for years before he can walk or maybe he won't, he will still find a way to move around..
Tala used to keep stuffing her mouth with food until she chokes on it because the receptors in her mouth didn't send a signal to her brain that it's full, so the brain didn't give her the order to stop putting food. Tala just needed to have small portions of food at a time until she learned how to eat slowly.. i need to Remind her while she's eating that she needs to stop and swallow.. with time she's getting better, this is not a disability on tala's side, this is a privilege that we were lucky to be born with, without working for it like she is working for it.. so I cancelled the word disabled from my dictionary or at least I'm trying

2- abnormal: it's the same as disabled or even worse.. Tala's genetics doctor told me this when I first me him and told him the word abnormal.. he asked me "can you define normal?" What is normal? And who is normal? I thought about this question a lot.. diversity on Earth is what keeps it going, everything is normal the way it is without comparing it to anything else.. every creature on Earth has certain adaptations to be able to survive, these adaptations are normal to each creature.. there will be no harmony in our life if we are all the same.. we won't learn anything if everything is exactly the same.. challenged kids are normal the way they are.. they learn to adapt to their limitations that we create, not them.. A blind child will find a way to survive and live his life, he's normal.. but when we keep telling him you're blind, you can't be like us then we are defying nature, we are being abnormal to deny him the right to try to adapt..and since then I stopped using this word..

3- retarded: I consider this word an insult so I won't even talk about it..

4- Special needs: I used this word a lot and still do sometimes because I got used to it but then I came across a video of Down's syndrome kids talking about why do we call them special needs? I thought to myself "what does Tala need?" She needs to be loved, cared for, needs to play, eat, drink, sleep, go to school, be happy, have friends.. non of the things I listed above are special.. isn't that we all need?
Someone might say but they need facilities, they need special cars , they need ramps.. that's why we call them special needs.. well, I don't think anyone who lives higher than the second floor would argue that an elevator would be awesome.. although he can climb the stairs. But an elevator will make your life easier.. can anyone now survive without a smart phone? I highly doubt.. although it's a luxury but take away smart phones and the internet and the world will stop.. so are we going to say that because we need the internet we have special needs?! We all have needs and some of them are not even essential for survival they are pure luxury.. so when a child needs a ramp to move from one place to the other how dare you call that a special need? Saying a special needs kid is off my list..

5- challenged kid: yes, I love this description.. it's so accurate on so many levels.. a challenged child is not just challenged alone.. he challenges everyone around him.. Tala challenged me to live normal, to accept her, to love her the way she is.. to talk about her without feeling ashamed, to work around her challenges and make our life with her happier than without her.. she challenged our families to embrace us, to work with us in making Tala's life easy and happy.. she's challenging every person reading about her now to spread awareness and reach out to those who are ignorant and in denial of the presence of challenged kids.. she challenged other kids to learn compassion and embrace the differences between one another.. Tala challenged her therapists to work harder and find a way to get her where she should be, find different techniques to capture her attention.. she challenged me as a teacher, she made me question myself "do I give up on my students if they don't understand or rebel or for just being a teenager?"
Challenged kids make you look yourself in the eye and see who you really are.. are you a fighter? Are you compassionate? Do you have the patience and strength to go the extra mile? Are you strong enough to face challenges everyday and still have a smile on your face and have the kindest heart ever like these kids do?
some kids live in constant pain, I've seen them and when I smile at them they smile back.. how do they do that? There are kids who can't control their movements at all so they keep slapping themselves or banging their heads on the wall, but when their moms told them I love you, they would just put their head on her chest and bang on it.. the mother explained to me that that's his way of saying I love you too.. how do they still have the capacity and strength to love? It tore my heart in pieces when I saw this scene but then it made me stronger, more forgiving, more loving.. it challenged me, it challenged my feelings towards a lot of things..
These kids are beautiful, loving, energetic souls put in a body they can't control, a body that doesn't function the way they want it to.. their beautiful souls create the impossible.. they fight and when they don't win, they fight some more.. don't put them down and tell them they can't.. encourage them, love them, make their life easier.. these kids gave me the perfect example of how our bodies are not what matters, it's our soul.. our soul that often gets lost when we start living like machines.. 

God bless all of our children

You are not alone:))

Sometimes parents put all the responsibility on their shoulder.. they get overwhelmed with all the work and the commitments, they forget that there are people around them who love them and care about them.. 

Include your family in every step you take with your child.. show them how to do any exercise or any therapy that you normally do at home.. take them with you to therapy, let them in.. they will be there for you and will know what to do if you are not there for any reason.. don't do everything alone cause you think you will do it better, if you teach them they will do it as good too:)) 

We have a beautiful family who invested themselves in Tala's case.. they wanted to learn everything and help in anyway they can.. everyone in the family became a therapist.. everyone in the family educated themselves about challenged kids.. her aunts used to take her to therapy when I didn't feel like it, her grandparents made miracles with her.. even my beautiful nieces ages 4 and 10, we explained to them everything simply and you would be amazed how sensitive and compassionate kids are.. Tala's cousins in the states, 3 beautiful girls ages 13, 11 and 6 understand her situation and they ask what can they do to help.. they became young therapists at home who play and teach Tala at the same time.. Ali's sister looked up rehabilitation centers and doctors in the states just in case..

having someone next to you makes you feel safe, you worry less about the future when you know that Tala is surrounded by people who would drop everything for her.. 

include your friends, they will support you, emotionally at least.. you will find someone to vent to and talk about how you feel... your friends will understand your frustrations, your anger.. they will take you out and give you a break..

Don't hide your situation from your colleagues and your boss at work..when people know, they will try to do their best to provide you with what you need.. I was blessed with an amazing boss who fully understood my situation and tried as much as possible to facilitate things for me so I can work and take care of Tala.. i was blessed with my colleagues who always understood when I can't go to work or have to leave early.. they always covered for me gladly.

Everyone was cheering Tala on with every achievement she made and gave me and Ali the moral support we needed..

if I was ashamed of Tala and never told anyone about her, if me and Ali weren't so open about it we would've been isolated in a bubble alone, and no one can do anything alone.. no one.. No matter how strong you are.. you need people.. make people, if you don't have anyone.. make friends from rehabilitation centers you go to.. make friends from the club.. Reach out for other mothers from their blogs.. 

Breathe, Relax, You are not alone:)))

Have a great evening:)

Oh the little things..

Having a challenged kid is challenging to the parents as well.. you go through a lot of big issues that is common to everyone.. the doctors, therapies, looking for rehabilitation centers, looking for help at home especially if you have other kids, running labs and MRIs and a long check list that you go through every month to make sure you have everything covered.. 

But then there are the little things, the very little tiny things that you don't talk about with anyone because they're too trivial compared to the list above but yet they are there everyday like a pecking bird on top of your head.. challenging you to live normal if you can get over these little things.. 

Here's a list of my little things that I learnt to get over with time:

1. buying toys for tuli.. there was a point where I didn't know if tala will even lift her head, so going to a toy store to buy a gift for someone was heart breaking to me.. I used to look at the toys and imagine tala playing with them and laughing and having a good time.. and when a guy from the store would come to me and ask how old is your daughter to show you what's suitable for her and then he would show me a bunch of things that I know tala won't be able to play with.. 

2. Going to birthdays of other children.. at the beginning I used to go, put tala on her stroller and mingle with people in the birthday.. but watching her sitting on the stroller while other kids are running around and playing was way too painful for me.. when I see her watching them and smiling but unable to play with them, it shatters my heart into pieces.. so I stopped going.. her father used to take her but I would sit at home because I can't watch this anymore..

3. Talking about nurseries and schools: I was never a part of this discussion, I used to avoid it.. or just sit quiet and listen until I can't listen anymore and leave... it was very difficult for me to hear other mothers so confused about which nursery they should enroll their kids in while I have no options at all.. I didn't want to feel bad towards others or make them uncomfortable so I just wouldn't participate.. but many times I wanted to tell them "relax, there's no need for all this stress.. you have options.. Thank God for that" 

4. The what ifs: What if tala doesn't walk? What if she walks but looks weird so people make fun of her or stare at her. What if she doesn't go to school? What if she goes to school but she's mistreated and can't defend herself or even worse, she can't talk so won't tell me so I can defend her.. what if I never had pictures of her in a costume party in her nursery like all other mothers do?what if We die? Will anyone fight for her like me and her father would? And this question haunted me a lot when I asked a doctor is there a life expectancy for Tala's case.. he gave me the worst answer ever, he said " no, there is no life expectancy, if they don't have any health issues they live normally but they usually die when their caregivers die because they don't find anyone to take care of them" I felt helpless, I mean I started exercising to be strong enough so I can carry her if she can't walk, I started eating better and take my medications to stay as healthy as possible to be able to take care of her, but death?!! I can't control this, I can't stop it.. so I thought the only solution is for us to die together or she dies first.. this was the lowest point I ever reached in my whole life.. the thought of that was like someone shredding my insides..I felt like a horrible mother to think that.. what can I do? How can I guarantee that she will live a happy life without me?  Then I thought to myself "what can I do? I have to believe that God will handle everything" and I remembered  this sentence "لو أطلعتم علي الغيب لاختارتم الواقع" if you knew the future, you'd choose your reality.. I found comfort in remembering that this is the best situation even if I can't see that now I will see it later.. 

I watched Tala and she showed me that this is the best situation. She showed me how she fights everyday without worrying about tomorrow, the moment tala leaves therapy she starts smiling again as if it never happened and she's not worried that she will go again tomorrow.. so I did exactly the same.. I enjoyed Tala everyday, had fun with her as much as I can.. I stopped comparing her to other kids.. she never compares herself to others, she tries to imitate them and if she can't she still laughs and send kisses and waves bye bye.. so why do I feel so bad?

 I stopped myself from feeling sorry and sad as much as I can.. I understood Tala's limits and started to work around it.. if she can't run, her dad will carry her and run with her.. if she can't hold the toys, we will hold it for her.. if she can't play hide and seek because she can't come looking for me, I will put her behind the couch and I will go looking for her.. 

 I started thinking outside the box, what can I do to make her happy with us and be happy with her.. I bought books about activities that can be done with challenged kids and since then my life had changed completely because I changed the way I'm looking at it.. I accepted Tala's limits and enriched what she already has.. I still had my days where I got frustrated because I'm human but I never let them break me like they did before.. Tala is my bundle of joy, I will not let my dark thoughts change that.. 

Pain:

When tala was around 1 I noticed that she doesn't have a reflex action and her pain threshold is really really high.. she would put her hands on a plate coming out straight from the oven and give no reaction.. I tried to put ice in her thighs and got no reaction.. of course I was worried and took her to a doctor who ordered an MRI and I will never forget this doctor because what he told me killed me and her father a hundred times a second.. and he was wrong.. he said that Tala has a very rare brain disorder that will cause deterioration of her development and will eventually kill her by the age of 5.. of course anyone can imagine how we felt.. words cannot describe it.. at all.. it was like my time has stopped and everything around me is moving so fast and I just can't understand what's going on.. 

anyways as it turned out it was a mistake, Tala's therapists and doctors told me we have to start therapy right away to stimulate her senses because feeling pain is an essential part of survival..

"Feeling pain is an essential part of survival"

This sentence made stop and wonder how many times people wish they lived pain free.. we don't want to feel the pain, we try to avoid it and we ask God why do we feel it and there it is, the answer, Tala gave it to me.. 

if you don't feel pain, you will not know that something is wrong so you won't fix it, it will get worse until it kills you.. 

if you don't feel pain, you won't learn how to avoid it the next time.. you won't be able to protect yourself.. you will not know how it feels to go past the pain and get over it cause it was never there.. you will get weaker, cause your body is being hit and you don't feel it..you won't feel your body in space, like the doctors told me.. Tala is not aware of her body in space, she can't figure out that if she gets closer she will hit the door and if she does, she will hurt herself and won't feel, so she will keep hurting herself and not know..

Pain is an essential part of survival.. feel it, accept it, heal it and get over it.. and You will survive..

And this is one of the many many things that I call "The Tala Effect" on me:)) God bless her #talalove #lovepatienceacceptance

The after life

Yes, I called it the after life, the after life is when a person dies and he starts seeing the truth.. he starts seeing things that might be beyond his understanding but he must keep up cause that's where he will be forever.. 

this is exactly how it is with knowing about your child that he/she is challenged.. this is your life now, this IS IT.. you have to learn how to deal with it.. there's no way back..

After the first night of knowing tala's diagnosis I started to scan everything in my life, all my mistakes, is God punishing me for doing this or that? And it felt unfair, it felt wrong.. no matter what I did I don't deserve this.. this is not right and I need an explanation.. I need a reason... 

when I had no reason in my head to explain this, this is when guilt started to creep up on me..

I tried to remember every detail from the first day I knew I was pregnant.."may be this one time I took two cups of coffee instead of one?, and there was a night I decided to sleep on my stomach, maybe she suffocated.. did I use my phone much? It's the wireless in the house.. I travelled a lot and went out a lot with my friends.. I wish I had more rest.." my mind was racing.. and no matter how well educated you are, you will still think like that. I had to find a good explanation, a reason, someone must've have done something wrong.. I asked all the doctors I met.. did anything cause this? They said no, it's pure coincidence..

And here is where I welcomed all the anger...

I'm angry at Ali cause if I did nothing wrong then he must've done something..

I'm angry at any person who tries to offer advice cause "who are you to tell me what to do with my disabled child? Did you ever have one? No, then shut up.."

I'm angry at all the doctors cause they have no explanation

I'm angry at myself for being that angry "don't you have any faith at all?" I used to ask my self... but back then I wasn't myself.. I was a broken person who had to hit rock bottom in order to get up and start turning things around..

I'm angry at God and this was the worst of all.. cause all my life God was a very important part of it.. so I felt betrayed.. I felt like God is punishing me for no reason..

anyways I had to brush these feelings aside the next day cause I had to take action, make phone calls, reach doctors and ask what's next.. so I put all my feelings inside a box and closed it for now.. this box was the heaviest thing I had to carry my whole life.. I'm sure Ali had the same feelings but it took us a long time to open this box and talk to each other about it.. our concern now was Tala and what's our next step..

All these feelings are normal and you have to let them flow through you so you can move on.. try to surround yourself with people who love you and can help you.. accept help, this doesn't make you weak.. be conscious to how you feel, accept and let it pass.. don't hold on to it.. it's not easy, it needs a lot of practice and persistence to live a normal life..

More on that later:)

Thanks for reading:)

الاقوال المأثورة للمصريين عن الأطفال ذوي الاحتياجات الخاصة:  

١- "ده بلاء من ربنا يا حبيبتي و ربنا لما يحب حد بيبتليه" علي قد ما الكلمة دي ممكن يبقي شكلها لطيف و نية اللي بيقولهالك انه أكيد يريحك لكن الحقيقة أني أوصف طفل برئ انه بلاء دي صعبة اوي.. أنا شايفة انه هدية من ربنا، فرصة ربنا بيديها للاهل عشان يعرفوا ربنا أكتر و يشوفوا معجزاته و نعمه علينا.. اي شخص بيتولد طبيعي بيمشي عادي و بيتكلم و يبص يمين و شمال عادي من غير اي مجهود والنَّاس بتتعامل ان ده شيئ عادي و المفروض لكن اللي عنده طفل من ذوي الاحتياجات بيشوف بعينيه قدرة ربنا بتتجلي قصاده كل يوم.. بيشوف إذ ايه ان مجرد بربشة عينيك حاجة مش سهلة و محتاجة مجهود و رغم كل ده تلاقي الأطفال دي عندها قدرة رهيبة علي الابتسام و السعادة رغم كل التحديات اللي بيواجهوها.. تالا علمتني ان لو جبل محطوط قصادي حقدر اعديه ان شالله اشيل حبة رمل واحدة كل يوم من الجبل ده.. علمتني الصبر و أني ابقي سعيدة بأي إنجاز صغير.. تالا اول مرة تعرف تبص تحت كنت حعمل فرح.. ازاي بلاء والنبي

٢- " الطفل ده يا عيني متخلف، ماتقربش منه" ، "اللهم احفظنا" مش معني ان ملامح الوش ممكن تبقي مختلفة و ان الطفل يبقي متأخر في مراحل التطور انه يبقي متخلف و نخاف منه.. الأطفال دي بتسمع حاجات مختلفة عننا زي التوحد مثلاً عندهم قدرة انه يسمع كل حاجة بتحصل حواليه و بصوت عالي ده يتعب اي بني آدم ، في منهم أحياناً بيبقي حجم اللسان اكبر من حجم الفم فغصب عنه يبقي لسانه برة ( مش عشان هو اهبل زي ما البعض بيفتكر) و في أمثال لا تعد ولا تحصي فا ياريت الناس تثقف نفسها و تفهم الاول و لو مش عايز تفهم يبقي ياريت بلاش إضافات من عندك تجرح بيها الأهل و الطفل.. و لو عايز تقول اللهم احفظنا يبقي في سرك و اللهم احفظنا من الجهل...

٣- " إنتي تاعبة نفسك اوي كده ليه؟ هي حتطلع اي يعني؟!!"

السؤال ده هو سبب كل المصايب لان الأطفال دي ممكن يطلع منهم كتير، ربنا بيديهم أحياناً قدرات خارقة. و حتي لو مفيش قدرات خارقة برده ممكن يطلع منهم حاجات كتيرة في الموسيقي في الفن عموماً في الرياضة في اي مجال.. لو بس بطلنا نسأل السؤال ده حنشوف معجزات..

٤- "هو إنتي عادي بتقولي ان بنتك مش طبيعية و بتخرجيها عادي، مش خايفة علي اخواتها؟ كده مش حيتجوزوا" 

آه والله بقول عادي و بخرجها و بنتي لذيذة جداً و كاريزما فظيعة عشان أنا محبستهاش.. الناس بتحبها و هي بتحبهم.. و هو مين فينا طبيعي اصلاً؟!! و اخواتها ايه اللي مش حيتجوزوا؟ ده اسمه علم الغيب.. في أيد ربنا حيتجوزوا ولا لأ.. و ممكن يبقي اخواتها عندهم طموحات اخري غير الجواز.. و ممكن اخواتها ان شاء الله عقبال ما يكبروا يبقوا الناس اللي بتفكر كده انقرضت أو اتعلمت ان الطفل ذوي الاحتياجات الخاصة كائن عايش مقدرش أخبيه و استعر منه.. ده أنا ببقي فخورة بتالا ان رغم انها كانت مش زي اي طفل كانت من وهي ٥ شهور بتلف علي الدكاترة و العلاج هي سعيدة و بتسعد اللي حواليها.. و سعادتها دي هي استمدتها مننا أنا و علي ، من ايماننا بيها وأن احنا لازم نخرجها تشوف الدنيا و تتبسط و تلعب.. 

يا ريت نحتضن الأطفال دي اكتر من كده.. يا ريت نشوفهم في الشوارع و النوادي و السينمات اكتر من كده.. مصر فيها كتير لكن مستخبيين في المدارس الخاصة أو في البيوت.. 

صدقتوا أو لا كل الكلام اللي أنا كاتباه ده سمعتو من ناس متعلمة والمفروض مثقفين مع الأسف!!