Frustrations you feel when you're a parent of a challenged kid:

1- Not finding an explanation to your child's case.. as humans we are built to ask why.. we try to understand things and put pieces together to come up with a conclusion.. so knowing that your child is suffering from something and you don't know what it is or what it's prognosis is extremely frustrating.. it gets worse when you have to decide to stop looking for answers and just move on.. deal with what you get everyday.. baby steps.. 

2- Trying to explain to people what is wrong with your child and they just don't get it. They don't understand what a genetic disorder is and how broad it can be.. that maybe it doesn't affect the way Tala looks but definitely affects the way she lives. They see her progressing and they simply tell me "you see, she's fine" they say it as if it was easy for her to progress, as if we didn't fight every single minute of every day to achieve something that is relatively very easy and very basic.. this used to frustrate me a lot

3- trying to find a GOOD facility that will provide your child with the care she needs.. and Good is the issue.. what is a good facility? One that will provide your child with proper care, one where doctors will sit with you and explain every step of their program for your child, one that is clean with clean bathrooms and changing rooms cause your child will probably spend a long time there, one where doctors are compassionate and loving, one that is well ventilated, one that is up to date, one that will provide your child with almost all of the therapies she needs or else you will end up running around Cairo for different kind of therapies.. and last but definitely not least, close to where you live.. this is extremely difficult.. you can't imagine how hard it is to find a facility with all these qualities in Egypt..

4- you get frustrated when you've been working on your child's progress for months and maybe years and you don't see the results you expect.. this is the most frustrating.. you want what's best for your child and you want her to at least take one step, just one step.. or turn around or be able to move her arm across her body from one side to the other but yet she can't.. you can see her fighting too but no result.. this will drive you crazy.. this frustration will lead to one of four things-

a: you get angry at your child and start yelling

b: you give up

c: you get motivated to push some more

d: all of the above

I went through all three.. I try to choose C as much as I can though..

5- the frustration mounted when I started looking for nurseries and then schools.. OMG.. the excuses I heard from nurseries and schools why they can't accept Tala.. I was shocked that very limited number of schools are ready to accept her and integrate her with other students, not isolate her alone.. it made me feel that we live in the dark ages where people were discriminated for their skin color or religion. 

No one is ready to learn what a challenged kid needs or what does it even mean to be challenged.. As a teacher I feel successful when I have a weak student who gets better along the year, it's challenging, it motivates me. So imagine how it feels when you take a child who is mentally slow or physically challenged and start thinking outside the box how can you make him learn? How amazing is that?

6- Finding books or support groups to help you.. there are no books about challenged kids in Egypt.. It's like these kids don't exist.. it's very frustrating!!! and I know I can surf the internet of course but not everyone has this luxury..

This is just a glimpse of what we parents of challenged kids feel most of our days..

But don't let these frustrations get to you.. let them challenge you to change the world we live in.. use all the anger and divert this energy into making your child the best to prove everyone wrong.. to have a live example that YES they can be AMAZING.. Fight everything you see wrong and try to fix it, even if you will fix just a small circle around you.. Good ideas never die.. Stay strong and we can do it:))))

Have a great day everyone:)