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Five Countries Later, the Fight for Services Continues

5 Countries Later, the Fight for Services Continues

  • Volume: 2
  • Issue: 1
Maja Asif | @zmajcek27
January 5,  2021
InterACT Online

When you are expecting your child and when they arrive into this world, the thought doesn’t cross your mind that they wouldn’t develop like any other child. My son had just turned 15 months when I first started suspecting something wasn’t quite right. By 18 months, I was convinced. This process alone was very difficult emotionally – acknowledging and coming to terms that something was not quite right. At the time we were living in Madrid, Spain. I gathered my strength and courage, went to my son’s pediatrician, and expressed my concerns about him. I was told like thousands of parents before me that they were sure that he was just a “late bloomer” and not to worry about it.

A few months passed and I saw other kids the same age babbling, talking, pointing, and interacting. My son didn’t do these things. I kept going back to the doctors in Madrid and was told to wait and see. Unsatisfied with the responses from the doctors in Madrid, we decided to travel to the UK where we’re originally from to visit a consultant. By this time, my son had already turned two. We were disappointed to hear the same old message that it was too early to tell and to give it time. Time kept passing, and all I was faced with was the same rebuttal from professionals: “not to worry,” “he’s a late bloomer,” “he’s just lazy,” and so on. Inside me, my maternal instincts were screaming out loud and telling me something was not right. I knew my son and his mannerisms, and it was clear to me that in his frustration that he was working really hard but unable to communicate. I felt like I was failing him.  It was this moment when I realized I had to fight for him to have the same opportunities in life as any other child.

For clarification, I was not a parent in a rush to “label” my child. I was though, in a rush to give him support or access to what he needed. My experience with different healthcare systems in various countries is services and support for children with needs are not available without a firm diagnosis, which most doctors are not willing to provide in the early years of a child. I spent a lot of time and energy navigating different systems and trying to understand what support was available, the prerequisites for accessing them, and how to fulfill the prerequisites. I had to keep ahead of new research, academic studies, and find new avenues I could explore. All of this was exhausting.

Visiting the ruins in Luxor, Egypt.
Visiting the ruins in Luxor, Egypt.

On a week-long visit to Serbia to see extended family, I vividly recall telling my husband the first thing I would do when we landed would be to see the doctors about our son and his difficulties. He wasn’t hopeful and wanted us to enjoy the holiday, but I explained I had to try until I knew that I had explored every opportunity for our child. We visited a pediatrician and as I began to tell our story, I broke down. I talked about the struggle to get to this stage and all the difficulties we had encountered. The pediatrician agreed and concurred with some of my observations – for example, he might be deaf because he wasn’t responding to the clap test. I don’t know if it was my tears, despair, or what she saw when she carried out her observations of my son, but she gave us an urgent referral to the main children’s hospital and for the best pediatric neurologist in the country. She told me not to waste time and go straight to the hospital after the consultation.

The next few days we were seen by several specialists. Please bear in mind this is a country with limited resources and language barriers, but for the first time, I felt heard and that my concerns were taken seriously. I felt like the doctors were genuinely trying to help me figure out what was going on. There was a sense of intrigue and professional duty to arrive at a conclusion, and even with our limited time in the country we had achieved a lot. By the end of the week, they gave a suspected diagnosis of PDD-NOS (known as Autism Spectrum Condition). This was a huge development. The doctors explained that they couldn’t provide a definitive diagnosis because the national medical guidelines required the child to be observed over a period of six months, but the suspected diagnosis was a saving grace for us. Now we could go to our doctors and build a case for access to services such as speech and language therapy (SLT) and occupational therapy (OT). There was no more denying that he needed support.

By this time we had moved to Cairo, Egypt, so I had to research what was available in yet another country. Of course, there was a language barrier and limited services available to expats. My son was due to start in nursery school and we had to find one that would accept him. With the suspected diagnosis, we received permission to undergo yet another assessment to satisfy the needs of the UK-based medical insurance. Once OT, SLT, and psychologists assessed him, there was no question that he needed help and support. It was confirmed that he wasn’t deaf; his hearing was actually excellent. While In Egypt, because of the stigma attached to labels, the specialists outlined what our son needed without writing an actual diagnosis. This was an issue for our insurance initially but because we had a suspected diagnosis from before, we could proceed and it would be reviewed after a year. This was after hours and hours or research, collating evidence, and explaining over the phone or email what could be done.

Upon reflection, I consider us very lucky. Our son received an excellent early years intervention programme, and it was not long before we started to see progress. Egypt had limited services for children with needs, and the specialists told me I had to be involved. I had to basically become the therapist and perform the intervention programme at home. They would train me, and they would work with the nursery too. By that time, I managed to secure him a place at a small nursery that would try to meet his needs.

Watching the sunset in Cyprus.
Watching the sunset in Cyprus.

When it is your child, you are willing to do anything to help them, but at the same time, it was very stressful for the whole family. Sacrifices had to be made. A change in dynamic was needed. Adjustments. Navigating through the special education world with so many different perspectives is quite honestly exhausting and can be isolating. The more I learned, the more confusing things would sometimes seem, and I had to do even more research to find more information in particular areas. In all of this searching, researching, and delivering of therapies, I also had to remember to be “just a mum” to my son and my daughter.

Every 6-12 weeks, there was always a review by the insurance company to ascertain if he still needed services. These services were needed but costly. This is one of many reasons insurance companies make the process a minefield and want a regular review. In my experience the process of review is always complicated with many hurdles to overcome that at times can feel nearly impossible to fulfill. The process to get approval for the next round of therapies sometimes took so long that we had to fund the therapies ourselves in order to guarantee continuity. This fight to secure services is still ongoing today and he is nearly ten years old.

While we were in Egypt, he had made great progress. He worked with several specialists including SLT, OT (Sensory Integration), Oral Placement Therapist, Cognitive Therapist and Applied Behaviour Analysts. There was a good partnership between the centre he was receiving the services, school (the center went to the school to train staff how to work with him) and us at home including me becoming a home therapist. Shortly after he turned three, he started talking. His speech wasn’t clear to begin with and initially we were getting at a word here or there, but after several months he formed his first sentence. I can’t thank everyone who worked with him either in the specialized service or school that contributed to his growth while we were in Egypt. They changed his life for the better.

We were due to move to Belgium next. Yet another system and another language barrier to overcome. More fights to convince insurance to fund the support he needed. We were informed in order to satisfy the medical insurance, he would need yet more assessments to bring the information up to date, and for this, it would have to take place in the UK. After the full assessment, it was concluded that he has Developmental Coordination Disorder (DCD). We finally had a concrete diagnosis! To us, this didn’t change anything because he still needed the specialist services, but it meant they couldn’t ignore us.

Achieving new heights, Waterloo, Belgium.
Achieving new heights, Waterloo, Belgium.

Developmental Coordination Disorder is a lifelong condition that affects motor skills, including motor planning and coordination. My son had a hard time walking without tripping and would frequently crash into things. He was nicknamed “the bulldozer” at his nursery, as he used to pull my arm (off) to get me to go and show me something, bite my cheek when trying to give me a kiss, or try to pull himself up and hit his head in the process. He was constantly spilling and dropping things. He couldn’t complete a three-piece puzzle but could manage to solve a 12-piece puzzle on the iPad. As he got older he struggled with riding a bike, handwriting, and other coordinating movements. He still has a hard time with fine motor skills such as buttoning up a shirt or zipping up a jacket, to name a few. Everyday tasks can be achieved but they take a lot more practice, time, and energy to accomplish.

One of the reasons we were looking forward to the move was because we heard that Brussels had one of the best inclusive international schools in the world. There was a lot of anxiety around how he would cope with change and how he would adapt. He was placed in an early years intensive learning support classroom; this meant he was receiving OT, SLT, and other services on campus during the school day. It was so refreshing, even when I spoke to the admissions team, they knew what his condition was, were supportive, and confirmed that they could meet his needs. This was never the case in the past, but this change meant I could regain my title of “just a mum.” Don’t get me wrong – there were things we still had to work on at home, but it was no longer the intensity it used to be.

My son had amazing teachers and specially trained staff to help him at the International School of Brussels (ISB). The one thing that always stuck with me regarding that school was he was treated like any other child, and the school was just helping him achieve his best. He had a homeroom class with children who had a variety of needs and some that didn’t have any. In the eyes of the staff they were kids that were in Kindergarten, and they were all equal. Children were taught that we are all different and that we all have  strengths and weaknesses. My son never felt less than any other child there. He was just him, not a child with DCD (issues, problems as others label it).

By the end of Kindergarten, my son had caught up academically with his peers and was moved from the intensive learning support class into the mainstream homeroom class, which felt like a dream. While we were ISB, we never needed to fight for my son to receive the support he needed; he flourished and he caught up academically. Most people nowadays don’t even notice that he has a disorder, and I am convinced that had we not intervened early, his outcome wouldn’t have been as positive. While we were in Belgium, I joined the Elementary Intensive Learning Support Team at the International School of Brussels. In a way, I became a “specialist” through my experience. Having had to implement early intervention programmes and having done so much research and training, I wanted to make sure I offered my experience to making other people’s experiences less stressful and easier.

Kayaking in Dinant, Belgium.
Kayaking in Dinant, Belgium.

We moved back to the UK at the beginning of 2019, and since then, I have completed a Postgraduate Certificate in Autism Studies. We covered all developmental and intellectual disabilities, but my work was focused on Autism. I am sad to say that since we returned to England, I have had to resume my fight in order for my son to access all the therapies he needs. My son is currently enrolled in a mainstream school with no support. Academically, he is doing well but this does not mean that he doesn’t experience daily struggles with his DCD. DCD is not something you grow out of. You learn your own limits and capabilities and how to better manage them, tools that help you bypass some of the difficulties you encounter over time. We are still waiting for therapies like physio to resume again, but every time you move you have to go through a barrage of assessments to prove that your child still needs these therapies despite the fact that they have a lifelong condition.

I hope to make other families and their child’s journey less stressful. Having someone to talk to, someone who has been through a similar experience, someone to decode the medical jargon, and what is available out there can be life-changing, especially if your family like mine moves quite often. If you would like to reach out, have a conversation, training or advice, please feel free to get in contact at office@foundarionblockseducation.com.

Maja is a Third Culture Kid who has lived, worked, and travelled in several countries. She is an international school educator that is passionate about inclusion. She recently founded Foundation Blocks Education to be able to help more families with children with disabilities.

: www.foundationblockseducation.com

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