So much of what is involved with parenting is a mystery. You can by help books and sit at the laps of all the elders in your family soaking up all the mother wit you can stand. Yet there are seasons when - by the decree of Allah - you will still find yourself in places: valleys so low and on mountain tops so high that you as mother or you as father will have no clue what to do. In those moments: when you hear the doctor, therapist, or specialist tell you that your baby/child is sick, covered underneath a life long disorder that will impact his or her quality of life, it will feel like the world has stopped for you and you have lost your way.
My dear sister - my dear brother, if no one has told you yet, let me tell you something I'd wish someone had permitted me to do when my daughter was first diagnosed with Infantile Spasms and Autism nine years ago: go on and cry it out! Don't try to hold in your hurt, your confusion, your sadness, or your disappointment. Cry, weep, wail, and drop down on your knees and call on Allah! Cry a whole day or whole week, if you need to and don't let anyone stop you either. Don't let anyone disrupt your tears. You earned those tears and you earned the right to mourn. What are you mourning? Someone will boldly question you, no doubt. They will tell you your baby/child is still alive. They will try to force you to be grateful indignantly. What they might not understand is that your tears are mixed with gratefulness but you are facing a change in not only your life but in the whole life of your baby's. Certainly, enshallah, there will be better days and some relief, but whatever you wanted/prayed for/thought your child's life would be like before he/she was diagnosed with a special/different/challenging need, will not be actualized in this life. You will have to let that dream go. And it will not be easily buried. It will resurface many times through your life. So cry and mourn. Turn back to Allah to find other goals with smaller steps to reach. You will have to accept the truth that your child may not ever coherently talk, walk, run, pray, read, write, or feed themselves independently. You will have to plan for the reality that you will have to take care of that baby/child for your entire life and when you die, if they outlive you, you will have to have someone in place to continue to care for them. So if they won't let you cry in peace, politely show them the door. And then cry, please! And when you are able......
Stand up in the midnight hour and continue to cry out to and for Allah's help. Do this regularly. Plan for it weekly or monthly or even daily! For sure Allah understands your hurt and your worries and He, alone, can grant you relief. And you will desperately need this alone time because there will always be some new challenge, struggle, or an all out fight to push through. The tears will continue to be necessary to shed. Happy tears when Allah grants respite and opens closed doors for you and sad tears will also trail you too. Remember though, He, the Most High, has promised after difficulty, relief will come.
Parenting special needs' children requires a superpower that doesn't come with a cape or some cool mask. If parenting special needs children and adults teaches you nothing else, you will learn very quickly that Allah holds all the power and might and you have none. You are weak, emotional, and prone to make so many mistakes with your child and yourself. But with Allah, your Lord, your Friend - Ar Rahman - He has the ability to help you find some superpower strength-dedication to sort out medications, schedule and get to a bijillion doctor appointments, potty training, learn sign language, unearth research and alternative treatments, stay up all night taking care of your restless child, and work a full shift during the day. So my dear sister - my dear brother, take care of you!
Nothing is easy, except what Allah wills to be easy. Crying isn't easy for some of us. It's hard to be vulnerable for many of us too. There are no short cuts or secrets to parenting any children and certainly not children with special needs. But with Allah, He can bring you ease and protection. So stand up in the midnight hour and seek His help and relief and guidance.
The Messenger of Allah sallallahu alyhi wa sallam said: "The closest one can be to Allah, is during the last third of the night. If one can remember Allah, the Almighty, at this time, let him do so." (At-Tirmidhi, An Nisaa'i, and Al Haakim)