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Sarah’s Story – Being a Special Needs Mom

When you are on as many mom groups as I am, you frequently come across posts that are deep, and profound, and heart warming. Posts that linger with you for days after you first read it. That was my first encounter with who would soon become a friend: Sarah Obeydul Haq. Her post was written when her first-born Ahmed turned four years old. It chronicled her journey of being a special needs mom, of how her son is autistic, and how they coped when they found out, and a quick summary of the last four years. But it was peppered with jokes and a unique way of story telling that will have you rooting for her and Ahmed, and laughing and hurting for them too.

I reached out to her when I found out she was Doha based, and soon we got chatting on Whatsapp. Honestly, I wanted to know more about her life, but I must admit I was truly nervous to ask. I didn’t want to sound intrusive but the thing with Sarah is that she is so positive, and vocal about her life that she can draw you in! And make you feel comfortable.

So, I took the leap and asked her if she would be okay to share her story with me, and with other parents through my blog and she graciously accepted. She was keen too because she truly believes that there can never be enough awareness on such an important topic.

The interview was at my house, and I was truly delighted to meet her wonderful family, Sarah, her husband Haq, her sons, 4-year old Ahmed and 2-year old Mohammed. They looked picture perfect, and they truly are blessed. Different challenges to what you and I may face, but a happy family! You wouldn’t even have a clue that Ahmed has autism, he is a little quieter than kids his age, but that can easily be because he is with new people.

Sarah’s Story – Being a Special Needs Mom – The Beginning

Sarah and Ahmed (Special Needs Mom)Sarah had a perfect healthy pregnancy, it was fairly easy. Ahmed Patel arrived on 24 November 2012. Sweet little darling, but quite gutsy. He seemed like he was not scared of much. Meeting milestones on time. Turning over, blabbering, eating well once solids started, was able to maintain eye contact well and respond as well.

“Ahmed was a fairly easy child. But he was a poor sleeper,” says Sarah. “He would barely sleep from 12 am to 9am, there was ever any long stretches of well-rested deep sleep. We have even taken him to the health center because we were worried. We didn’t think too much of it back then. But now we know that it was our first red flag.”

Life went on as normal, and in 2015, their second child – Mohammed was born. When Mohammed was about three months old and Ahmed was 2.7 years old, the family went to India for a vacation. And Ahmed fell ill with a stomach infection. All he was had in a 24 hour span was 5 cups of milk.

“It was really upsetting. My boy was on anti-biotics, and was not eating and I could see a clear visible change. Over a month, he went from a happy vibrant child to someone who was moody and listless. Almost unresponsive.”

Ahmed was quieter than kids his age, and seemed to be more of an introvert. He didn’t like crowds or lots of people. Although her boy was not talking much at that age, it didn’t really bother Sarah or her family. She herself came from a family history of late-talkers. Her sister started talking when she was almost 4 years old.

“But this really hurt. I knew he was upset and he was probably in pain and he could not tell me how he was feeling. We were really unsure of what to do. We visited a few doctors, and we even called the Alim to ward off evil eye.”

Sarah’s Story – Being a Special Needs Mom – The Diagnosis 

Although he started eating soon, the parents knew something was amiss. And on the advice of their pediatrician in India, they took him to a highly reputed and experienced therapist in Surat, Gujarat. The doctor watched Ahmed interact with his parents and surroundings and broke the news to them: “Your son has autism and Attention Deficit Hyperactivity Disorder (ADHD).”

Sarah felt like the earth has opened up under feet. She felt angry and refused to believe it. “How dare you say something like that about my son? How dare you?” she raged at the doctor. “Does my boy look like he has special needs?” She was so angry that she refused to even see the doctor again and returned to Qatar.

“I was in phase one of how we parents cope. Denial. Complete denial. I didn’t want to believe there was something different about my boy. Why would there be? How could there be? There was no family history. I had an easy pregnancy. H was a wonderful child. There must be something wrong with the diagnosis, right?

But she knew she needed more answers. After they returned, they visited the Primary Healthcare Center and got a referral to Rumaila.  The family started seeing a speech therapist but as expected, there was no information forthcoming from the specialist about Ahmed’s autism. Not that Sarah didn’t ask though.

And in 2016, the family had their first appointment with Dr Maria Fatima Janjua at Sidra Medical and Research Facility in Doha. For Ahmed, Sarah and the family, Dr Maria was a true blessing – she was a God-sent. She observed Ahmed play with his toys and spoke to him, and asked questions about his hearing, and about his activities. She then held Sarah’s hand, and in an extremely gentle and positive manner, Dr. Maria confirmed that Ahmed was indeed autistic.

 “I broke down, right there in the hospital,” remembers Sarah. “The doctor was there for me, and helped me cope but it was a devastating news. Not something that I wanted to hear. But it is what is. I came back home and cried a lot. I took almost six months to come to terms with it. Haq, my husband, my pillar of strength made peace with it in about a week. He was the one who gave me sanity and helped me keep a clear head through those initial days.”

Her moods ranged from being really upset to accepting, from denial to disbelief and everything in between. She could not eat and she even ended up losing weight. She could not focus. How to make Mohammed understand, she had no idea.

Both her family, and Haq’s family fully extended their support. Her cousin told her that she needed to be strong for her child; her younger sister shared success stories and TEDtalk videos. Having her troops rally around her and Ahmed helped the family gain acceptance and work to plan the next steps.

Step by step, she began charting her course of action, slowly but steadily, she began building a network of parents who were in similar shoes and healthcare professionals. Her search led her to Shafallah Center, where she met Mrs Rima Abu Chakra, Former Head of the Autism Unit at Shafallah, who soon became a mentor and confidante for Sarah. She was also a special needs mom – her 20 year old had cerebral palsy, was nonverbal and epileptic. She gave her the resources, and more importantly, the faith and confidence needed to push forward.

“After surrounding myself with moms who were dealing with special needs, I realized I had to be strong. I realized I had to be more vocal about it. Because there just isn’t enough information out there. Once my anger subsided, I realized I had no information or knowledge on special needs, on autism, on ADHD. People need to talk more about it, we need to raise a consciousness about it.”

Sarah’s Story – Being a Special Needs Mom – Therapy and Care

Ahmed started receiving therapy at the Rumaila Center and they could see a vast difference in a month. He started smiling more, he started reacting to rhymes more. He started eating better. Potty training needed a little more coaxing, but they are making progress. He loves to play with his cars, and blocks and hanging on the monkey bar is his favorite activity. He loves to go to parks and beaches with the family. At the park, he is still a bit shy, but slowly is beginning to be friendly with other kids. Sometimes, he is a bit socially awkward.

Ahmed also started to respond to his little brother more. The relationship between the two boys is like any sibling relationships. “This is our normal. This is how Mohammed has seen Ahmed since the day he was born. They like to play with each other, and love each other, and fight and kick – basically a perfectly mad healthy sibling relationship.”

Her fondest memory, among so many precious ones is when Ahmed spoke a full sentence for the first time. He said, “Mama Mohammed Ahmed maare”, meaning “momma Mohammed hit Ahmed”. She then had to sort out the sibling squibble but her heart was bursting with happiness and pride at her 4-year-old, and her two year old.

One key issue that the family has faced is the lack of facilities. Qatar does not have enough facilities for expatriate children with special needs. The few facilities that does exist are pretty pricey. “I understand why it is expensive – they need a large number of highly trained staff, and a great facility, but that it turn makes it almost impossible for us – without getting additional financial help. In the same breath, I must also add that I am truly grateful for the healthcare system – be it Hamad or Sidra or Rumailah – the care is outstanding at almost no cost to us.”

While on the subject of medicine, I had to ask. “Do you think vaccinations have contributed to this?” And Sarah said, “Nope. Ahmed has had all of his shots, and Mohammed is up-to-date on his vaccines as well. But I fully understand why some parents may choose to not do so.”

Sarah and her family are fairly happy with their means. Haq is an Alim at the local mosque. The family gets housing, and electricity. But more money means better care for their child, and so they reached out to several charities and had a great positive response from Eid Charity in Duhail. Sarah also launched the Bombay Baakda, a home-based catering which sells some delicious desi food and chat.

According to her, the biggest lesson Ahmed has taught the family is love and patience. “My boy cannot fake his emotions, he cannot lie. When he give you a hug, that is all I need. It is with his full heart and emotion. It has a purity that cannot be replicated. Yes, children do love without agenda, but a special needs child – even more so.”

Sarah’s Story – Being a Special Needs Mom – Awareness

Parents need to know what to look out for: “A lot of these may seem like normal toddler behavior. Random – but that is how some toddlers are. But do ask yourself this: “Is your child quitter than others, does he prefer being by himself, is he a picky eater, is he not responsive to his surroundings, does he sleep well? Sometimes they may seem like they have OCD – want things to be done in a certain way, wants to be left alone and need personal space. If anything seems amiss, see the right therapist. Hopefully all is well, and if so, then great. If it is not, at least you can start treatment early. The most important thing is to catch the signs early. Early intervention can make a huge difference.”

Another topic I had to broach with her was neuro-typical families and their interactions and understanding. I asked if she finds that many are nervous around her or her family. And she said: “There really is no need to worry about asking us something about our life. I am happy to explain and help you understand. The only request I have is to keep judgements aside. If you see a child being different, or even throwing a tantrum, don’t judge. You have no idea what it is to walk in their shoes. Don’t apologize, there is no need to say you are sorry. If at all you can lend a helping hand or even a smile can make a difference.”

She also urged parents to teach their neuro-typical children to be more accepting. “You don’t even have to go out of your way for this actually. It should be a inherent part of parenting – to teach kindness and compassion, and respect. Respect for those who look or behave differently. We are all different, but same. Slowly but surely, if we all work together, everyone will be willing to accept children who are different without qualms, without question – like they deserve.”

In December 2017, he started going to the Qatar Institute for Speech and Hearing. And it has helped Ahmed gain confidence, and comfort. I met Sarah and her family last week, and even as someone who has only met Ahmed once, I could see a lot of improvement. He was playing with us and interacting with my little one. They were all being silly little kids. And I am convinced things will only get better.

Talking about her hopes for the future, Sarah says that she is scared sometimes, but optimistic. “Each day is different and beautiful and special in its own way. Some days are really tough, but for such days, there is always coffee! Come on, there are people who are in worse situations than I am. I have a lot to be grateful for. I have plenty of reasons to get up each day with a smile.”

Sarah’s Story – Being a Special Needs Mom – Advice

Her advice to new parents is to be vigilant. “I cannot stress enough on the importance of early intervention. Ask him about his day, watch out for any signs. Keep in mind that it is not easy. But also keep in mind that there is a more important person in this than you – your child. Your child needs you to be there for him. Hug him, hold him close. Enjoy all of the silliness that comes with having a child.”

“Everyone is normal, yet everyone is different. There is a special uniqueness to all of us. Seriously, normal is overrated,” she says as she signs off with her signature infectious laughter. As for me, I can’t but be grateful – for everything that I have been blessed with in my life, with my family. I can’t but help be humbled by Sarah and her strength and her innate positivity.

Sarah, thank you for sharing your life with me. Thank you for helping me understand and thank you for hopefully helping others around us understand what it means to be a special needs mom!

 


To find out more about Sarah’s story, visit https://www.facebook.com/specialneedsbatmomma/?pnref=lhc

To place an order with her catering business The Bombay Baakda, visit https://www.facebook.com/thebombaybaakda/

 


 

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