by Lilly S. Mohsen
I’m not a writer or a psychologist or the ‘happy girl’ most people know me as. Today I’m just a defeated mother who is tired of pretending she’s strong enough to handle this challenge.
Today, I only want to sit with moms like me, who are tired of listening to people say “God gave you a ‘special’ child because you’re a special mom”, or “You’re blessed with a rare gift”. I want to hug the moms holding back their tears and screams as they watch their disabled children struggle through life; rejected, ridiculed and shunned by a society they can’t possibly fit in. I want to pause this roller-coaster of emotions everyone thinks we are gifted and lucky to be on. Today I stand on solid ground holding hands with my own kind, and I ask with all honesty: how does a mother of a normal child feel when she hears he’s being bullied at school? How would you feel if your child is never invited to birthday parties or family gatherings? How would they feel if your friends are scared of your little son or daughter? If doctors tell you your child will never be able to go to college or work or drive or get married? We all know it’s in Allah’s subḥānahu wa ta’āla (glorified and exalted be He) Hands in the end, but how would you feel hearing it?
Perhaps people think raising a child with special needs is a gift. But how can a gift give you so much pain? How can a blessing break your heart? In this article, I share with you an example of the daily challenges I may face with my son, and explain my guide for mothers to be productive when raising a special needs child.
Trouble lurked on the horizon
Not only was the cute little girl crying at the top of her lungs; she was wearing a RED t-shirt! Those were all the triggers my son needed to attack her. And even though I’m known to have the memory of a gold fish, and this one incident happened many years ago, I still remember it vividly…
It was supposed to be a beautiful day. We were at the playground and I had that extra sense of triumph of having everything under control. No shoes, all-cotton clothing with tags all cut out and he hadn’t had any sugar, fruits or ketchup, so according to my calculations, the chances of him acting up were pretty low that day.
I was miserably wrong. Even though it was a split second, it all happened in slow motion.
I was holding my son’s hand and carrying my baby girl in the other arm. The sounds of the cries echoed in my ears and I saw the look on my son’s face change. I quickly put my baby in her stroller as I felt his jaws clench and his little hand squirming away from my tight grip. He ran like a tiger towards the cute, innocent girl, and I knocked over a chair trying to catch up with him. I finally grabbed him from his shirt before he reached the girl, whom at this point had stopped crying from the shock of what was about to happen, yet still had her mouth and eyes wide open. Her mom started screaming, which aggravated my son even more as he took out his anger on me. He slapped me hard on the face, swearing all kinds of obscenities then kicked me in the stomach. Amidst the chaos, I motioned to the mom to take her girl and walk away, hardly missing the dirty look she gave me.
“Some women are just not allowed to be mothers!” I heard her tell her friends who also turned around to stare me down.
I bolted my son with my arms only to find another woman tapping me on the back and handing me my screaming daughter. “You really shouldn’t leave your baby unattended,” she said with disgust. “It’s not her fault you can’t control your son!”
I thanked her with an inaudible whisper before deciding to never return to the playground again. My tears rolled down all the way home, not even feeling the pain of my son’s teeth digging into my skin. Biting at that time was one of the few skills he used to calm himself down.
I mustered all my energy to get through the tantrums and breaking of stuff, guarding my daughter’s life from my son’s sudden unexpected blows till bedtime. Then I sat alone in the corner, just staring at the wall in utter silence, too drained to cry.
After all, it was supposed to be a beautiful day…
Denial drags us down
With a wide spectrum of disorders ranging from ADHD, autism to Down’s Syndrome, every child is different and no ‘one solid advice’ will cut it. Medications have catastrophic side effects and some disorders have no known cures yet. I remember after two weeks of constant testing, how uncomfortable the neurosurgeon was when he said, “You need to come to terms with your son’s reality. Sugarcoating the truth will only set you up for a huge disappointment. Therapy can help him cope but no one can heal him completely.”
“God can heal my son. Miracles happen everyday!” I replied with conviction.
And so I held on to my faith. I still put him in mainstream schools, got him shadow teachers and demanded he gets the academic education he deserved. Denial was the only tool I had at my disposal until the powers of it ran out. I prayed for miracles but nothing changed. I stayed up night after night asking Allah subḥānahu wa ta’āla (glorified and exalted be He) for help, my tears flowing non-stop as I begged and pleaded and supplicated for a solution.
“Mommy, what are you doing?”, my son asked one day.
“I’m talking to Allah subḥānahu wa ta’āla (glorified and exalted be He), asking Him for help with something,” I said, wiping my tears.
“I want to talk to Allah subḥānahu wa ta’āla (glorified and exalted be He) too”, my son said. “I want to ask Him not to make you sad anymore.”
“Allah subḥānahu wa ta’āla (glorified and exalted be He) loves us so much and He is so kind! Do you really think He would want to make anyone sad?” I asked.
Hearing myself say those words, hypocrisy stared back at me with a smirk. If I was so sure of Allah’s subḥānahu wa ta’āla (glorified and exalted be He) love (which I am) then why was I sitting here feeling sorry for myself like I’m being punished for something I didn’t do? Why was I trying to convince Allah subḥānahu wa ta’āla (glorified and exalted be He) that I have unwavering faith, and then break down when He tests it?
“I will tell Him I don’t want a sad mom!”, my son said, interrupting my thoughts. “Give me Allah’s subḥānahu wa ta’āla (glorified and exalted be He) phone number!”
My son’s innocence replaced my bitterness with laughter. That day I stopped waiting for a miracle, for I realized that you can’t hope to swim without getting wet, you can’t pass an exam without studying, and you can’t jump high without bending your knees. I realized we need genuine faith for miracles to happen and so I stopped begging Allah subḥānahu wa ta’āla (glorified and exalted be He) not to test me, because big rewards require huge efforts. And I’m truly desperate for the biggest reward of all: seeing Allah’s subḥānahu wa ta’āla (glorified and exalted be He) Face in heaven.
It’s not what you see, it’s how you see it
I wish I had a magic wand or a specific piece of advice to help every parent reading this article, but each case is just as unique as each of our children’s needs, and it takes a lot of trial and error to figure out a productive pattern that works. I do have something else to give though, and once you allow yourself to see it with your heart, you’ll realize it surely does put your mind to rest. Allah subḥānahu wa ta’āla (glorified and exalted be He) says:
“So verily, with the hardship, there is relief. Verily, with the hardship, there is relief.” [Quran: Chapter 94, Verses 5-6]
Allah subḥānahu wa ta’āla (glorified and exalted be He) never said we won’t face difficulties in this life, but He promised He will put ease in every hardship. Not before or after hardship, but along side of it. For every negative there must be a positive to balance it out, otherwise we would have collapsed a long time ago. It’s not the problem that’s affecting us, it’s how we deal with the problem that’s making it that much harder. It’s us being too drained to search for the comfort within the suffering that’s making us sad and broken. That we do not subḥānahu wa ta’āla (glorified and exalted be He), doesn’t mean it’s not there.
So allow me to share my personal endurance guide, complied after over ten years of downfalls and endless drama.
The 7 rules of survival
- Ask Allah subḥānahu wa ta’āla (glorified and exalted be He) to help you through this. Ceaselessly. Consistently. Pleading while making sincere dua works!
- Stop resisting and start accepting. Your life has changed so don’t go against the current. When necessary, adjust your schedule, outings and behavior according to your child’s special needs. If your child is aggressive, you’ll have to think of other kids’ safety and keep him or her away. Special needs schools are your best option. Trained professionals will guide you on how to create a new, easier lifestyle.
- Put your ego to the side. Apologize and explain your child’s condition to strangers when things get rough. I found that people become very sweet and helpful once they understand the situation.
- Take a break before you break down. Spoil yourself every now and then with a spa, alone time, or some fun with your friends. Find a trusted someone to take care of your child even if it’s for a couple of hours once a week. Your child will be okay, don’t worry. Well-rested parents make better parents.
- Join support groups, look up nearby facilities that provide activities for special needs kids, and share tips with other parents who are going through the same struggle. It’s soothing to realize you’re not alone in this. I personally met wonderful families through organizations like Unique and Autism Speaks.
- Don’t forget your other children! You’re not the only one carrying this load; your special child’s siblings are carrying it too. Let them voice out their feelings and get the emotional support they need before asking them to help out or cooperate.
- I firmly believe that every child, with special needs or not, has a unique talent gifted by Allah subḥānahu wa ta’āla (glorified and exalted be He). Find that genius flair and pursue it to the fullest. For example, it may just be me, but I believe my son is super-talented in soccer and he is destined to be the next Lionel Messi In sha Allah! Maybe some of our kids don’t have the mental capacity to believe in themselves, but us parents have enough faith and will to believe in them.
Truth is very different from reality
I remind myself before anyone else to zoom out and see the bigger picture. All this agonizing sorrow is perhaps a darker shade within a colorful portrait. The test is only a means to achieve a goal we choose. We can either resist the harsh reality or accept the blessed truth behind it. We can complain and scream “why me?!”, wasting precious productive years of our lives, or we can accept that life in this world was never meant to be perfect, realizing only those with great stamina and perseverance can reach the top, and finally enjoy that breathtaking view in Paradise.
Remember the hadith says:
A man once asked Prophet Muhammad ṣallallāhu ‘alayhi wa sallam (peace and blessings of Allāh be upon him): “Which of the people is tried most severely?” He said: “The Prophets, then those nearest to them, then those nearest to them. A man is tried according to his religion; if he is firm in his religion, then his trials are more severe, and if he is frail in his religion, then he is tried according to the strength of his religion. The servant shall continue to be tried until he is left walking upon the earth without any sins.” [At-Tirmidhi]
We hear this loud and clear, my beloved Prophet ṣallallāhu ‘alayhi wa sallam (peace and blessings of Allāh be upon him). Loud and clear.
“Okay fine!”, I suddenly giggle like a little child. “Perhaps we are special after all.”