My journey like any other mother with a special needs child is a journey and a story in itself – unique as each person involved.
I read the word autism sixteen years ago for the first time when I looked up speech delay for my struggling almost 3-year old son, Hamza. A year before that my sister was visiting to help me with recovery from some medical issues. She told us there was something about the kid and maybe we should consider a looking into his development. I had barely recovered from my surgery, our second baby was just 7 months old, we were about to move from California to Arizona due to my husband’s job and had to arrange my sister in law’s wedding in Chicago. There were so many things going on that needed our attention. I remember looking at my son throughout the wedding, his face sometimes happy, sometimes puzzled, sometimes scared – I also saw many people eying him and then me, mentally pointing fingers and criticizing me for my parenting. I was so tired of all this commotion in life at that time and wanted to give Hamza my sole attention, to understand what was going on. His pediatrician had not raised any flags yet, although when I asked him if Hamza has autism, he said it was too soon to diagnose. Per his concurrence, shortly after moving to Arizona I took kids to my parents’ home in Pakistan thinking one language, help for other son and some rest in my life might bring my son out of the “trauma” he may have gone through due to recent changes in our life. My parents and sibblings were very accommodating but strangely enough, going back to Pakistan, a country where I have always lived and grew up, was a culture shock in itself. A hostile place full of judgments from people I had known, I was related to as well as from those whom I had never met– I was surprised at people’s bluntness about how I had failed in raising my son. I was given all sorts of advice and criticism about things I was not doing or doing to make him talk. I took Hamza to psychology department in Punjab University and he got diagnosed with autism. I came back with heavy heart to the US and some probing directed us to the school system. Hamza was assessed and legally listed as having autism in 2004, confirming the diagnosis I brought with myself from Pakistan. Although I had known all along that the label was in order, but somehow I thought an assessment in the US might change things – reading his diability on the piece of paper was different. I react late to things or we may say that as a defense mechanism sometimes I can curb my feelings when I am in crisis to deal with the crisis first and feelings second. In short, the stages of grief as laid out by Kübler-Ross model were lost on me. Our immediate families were hurt and tried to help us but part of their struggle with the diagnosis was different from ours – it seemed like their genetic coding was somehow challenged: both sides justifying they can only pass down good genes, wondering how this mishap take place in “our family??”. But in the end no one could help us- long distance phone calls cannot provide therapy, consolation does not improve symptoms, just telling me, “he will grow out” does not mean he will – only proper intervention started to help.
Hamza was beyond early intervention age, so he was enrolled in Pre-K at Scottsdale School District and thankfully soon his services were in place. The school started, services initiated, and our home became a hustle bustle place of therapists, each doing his/ her own part to help Hamza comprehend the world. We had picture schedules all over the house and my dining room-converted-therapy room was now the main progress heaven for Hamza. Different areas were assigned to provide opportunities for learning, meeting his sensory needs, improving motor skills and developing his communication.
Initially, for a very brief time period, I had felt the need to hide his diagnosis but within months I thickened my skin I was open about it and made sure Hamza was part of everything we did and went to every place we went. I bought him shirts that said things like, “I have autism, what is your strength?” and I was always ready to defend him in public and spread awareness. The decision was difficult, but it did two very important things: it helped Hamza in transitioning skills early in life and it helped us surround ourselves with valuable and quality people who were willing to accept us with our baggage and filtering those who did not.
As immigrants in another country, first-time parents in a different culture, we felt alone in understanding this deviation from developmental standards. Navigating through an unfamiliar world to get information about an unfamiliar aspect of life was a project; although I stood firm on the mentality to “think beyond diagnosis” and focus on the treatment, I couldn’t stop looking at millions of resources that web search generated every time I typed the word autism. After spending few nights in the loops and loops of links and websites, plethora of promising treatment plans, so-called proven methods, apparently made-to-look convincing statistics, along with many other papers supporting or negating all this, I was exhausted. One day Owais sat me down and talked to me, explaining to me we are doing everything we can, the services and treatment have started and our son is improving; I must have good sleep, need to keep my strength to do thousand things to facilitate his development – not to mention I was running household, had another kid and my own sanity to take care of.
I directed all my efforts in his therapy, reinforcing school goals by supplementing in-home program. Hamza’s placement did not seem appropriate in his current pubic school setting, too high functioning for one setting and too low for another. Doing research, I found out about a school called Hi-Star Center. Now the task was to get funding from public school to place Hamza in the private school. I always kept great relationships with his school teachers and psychologists and his funding for the school was approved in matter of minutes. Hamza attended Hi-Star for 8 years, till we moved to Dallas two years ago. There, we made so many friends who came closer than family and mattered so much to us since they made Hamza’s wellbeing, happiness, and his treatment their business. The staff not only took care of Hamza but also our family. They were always there to help us and guide us. He made great progress, we as a family learnt a lot and as time passed, autism became our lifestyle.
During this time, we had our third boy and once he turned two, and Hamza was thriving in Hi-Star Center, I decided to go back to work. The decision became an impetus to change profession, in response to and in line of what my recent real life experience had been. I had come to the US with a masters in business but after spending so much time with my son, I wanted to enter special needs industry. I started my leveler coursed at ASU and applied for the competitive graduate program in Communication Disorders to become a speech pathologist, praying that I got admission in ECU which at that time was the only program offering long-distance degree without mandating on-campus internships. Overjoyed to receive the acceptance letter, I got a new direction in my life. To be truly honest, I had not expected the masters to be as challenging as it proved to be and I am not sure how I managed those years but I felt so accomplished once I was done! It was such an amazing feeling to gain all that knowledge, look at the needs and deficits of communication from another angle, and finally start the real field work of assessment and therapy! The job brought its own dynamics – I saw myself sitting on both sides of the table, talking to parents who were in different stages of the diagnosis of the family. But the flashes of my struggle hit me hard when I moved to Dallas and started working with 3-5 age group. I was part of the team who most of the time were the first one to break the news of the child’s disability to the parents. Every time it happened it brought back my own journey like a movie running in my mind. I realized that parents who were familiar with the system, who had family around them, belonged to this culture were also as clueless as I was when I read the work “autism” in my son’s evaluation report years ago. The concern and hurt was same, the shock was the same. Now that I run a small personalized private practice and still continue to be part of assessment and treatment for these individuals, I feel more relaxed and can be open about my own experience. The huge difference is people are much more aware of this epidemic, the kids are diagnosed earlier, and treatment is started much sooner. The awareness plays a great role in overall outlook of the whole situation. Hamza was diagnosed only 15 years ago but I applaud how much more educated people are generally about this disability.
Autism brings many celebrations. Among lots of other things. These celebrations are what keep us parents of auties of any other special needs kids going…uttering “Mom” at 5, tying laces at 16 or following simple two-step directions after 100+ attempts. The celebrations that many parents take for granted. The journey is full of humbleness and gratitude, raising a child who is so dependent upon you and so different from the norms of the world he is surviving in is blessing and a challenge! Sometimes my own feelings, outlook and opinion about autism confuses me. On one hand, we parents want the whole world to be so aware and educated in this diagnosis that they recognize the symptoms and adjust expectations soon as they look at our kids without judging them at all. On the other hand we are doing everything to prepare our growing kids to bridge the gap of what we call “normal” or typical and look as normal as possible and blend with the rest of the population.
As parent as well as professional, I have come to know so many people who have helped me gain strength, regain and regain it again. I would not have been able to do this on my own. Owais, my husband has been a rock and my two precious kids add to our strenght. We have great friends across the world who are always there to provide the advice and support that we need. Then there are times when a complete stranger has brightened up my day, gave the best, most soothing (well, feel-good ) perspective that no therapist, doctor or teacher has ever given. Few years back, our landscaper was discussing the backyard plans with me when Hamza came out and shook his hand, said “Hi, what’s your name?” in an artificial, trained monotone voice. The landscaper took the cue right away and pleasantly and patiently answered Hamza’s same questions multiple times. He then told me something that I have since then conveyed to many fellow parents: “These kids are special kids. When God is making these little angels, he looks below on the earth and wonders which parent is capable and worthy of the presence of this “special custom order”? That house has to be very special that these special kids live in. So you see Mrs. Rehman, you and I are very special people of God and he chose us to give these kids.”. Till then, I had always heard the word “special” used in the context for individuals with disabilities, but this simple man gave me another meaning of this word that changed my perspective – he is special needs and we are special parents! Sometimes we parents need to have these “feel-good” perspectives!
Hamza has come along a long way. He graduated from high school last year and is now in the vocational program. The milestones are different now– guardianship, social security, Medicaid applications etc. He never mainstreamed and we are expecting assisted employment in future. It seems like one stage is finishing and now we are entering another – adulthood. Once he is done with school district, he will be truly a special needs adult and we are getting ready for these new dimensions. The journey has been very humble, joyous and made us very strong but I will not lie, on many occasions we have been scared, confused and anxious. We still take him everywhere with us and enjoy him and continue to be proud of this angle guarding us and our home.