By Asmaa Belrhiti
Kuwait offers a growing list of services for children of special needs, varying from government services that are free of charge to private sector options. Understanding the process, however, can take time and for moms who haven’t yet received a diagnoses, it can be confusing and upsetting.
The struggle starts at the diagnostic stage. If you are a mom with a child who is either born with special needs, or looking for a qualified development pediatrician to assess your child because you feel he or she is not developing as their peers, be prepared for a lot of legwork and research on your own. Unfortunately the government system is not fully developed when it comes to diagnosing special needs and the private sector is fragmented and expensive.
If you are embarking on the public health route, you will need to start first with your local area clinic. There you will need the doctor to write a referral for your child to visit the specialized pediatric department in Al Sabah medical center. You will need a lot of documents including: Child’s health card, civil id, referral paper and appointment card. To obtain an appointment can take as much as a month or more. Finally, during the visit the doctor will examine and assess your child. They may or may not ask for bloodwork or other tests. Then you will receive a diagnoses.
Unfortunately, that may just be the start of your journey. Because the reality is that diagnosing a child facing developmental delays is not the work of just one doctor but of many specialties and it should not happen in just one session but should include a range of tests and assessments. Also be prepared, doctors sometimes will make a diagnoses that can be scary or shocking without offering guidance or reassurance and this lack of a proper ‘bedside manner’ can be very upsetting.
A diagnoses that involves special needs can be upsetting and set the parents off on an emotional roller coaster. Parents will first be completely emotionally shocked and then will be facing a near blank slate of information. Where do you go next? What do you do? What does this mean? What about support or guidance or information? Doctors aren’t always helpful and in some cases can even offer the wrong guidance or advice.
For example, when I realized that my son might have a developmental delay, I set about this process. After a long process, I personally received many different – and wrong! – diagnoses for my son from different doctors in Kuwait. The doctors at the pediatric department at Alsabah hospital diagnosed him with severe mental retardation. (Yes, they are still using that unhelpful and unprofessional term.)
Two private health care providers also assessed and diagnosed my son. One diagnosed him with MERLD “Mix Expressive Receptive Delay” and the diagnosed him with Autism spectrum. In both experiences they saw Bader in one session that didn’t take more than two hours. These sessions did not include a child psychologist, nor speech or occupational therapists to have a well-rounded diagnosis. Now, private healthcare is very expensive in Kuwait and this is as good as it gets, not to sound pessimistic but this is our sad reality in Kuwait.
As a mother to two special needs children and down syndrome & Autism activist, I would love to see in the near future a proper department in Alsabah pediatric department, where there is a committee that consists of a pediatric developmental doctor, a child psychologist and OT & ST (occupational & speech therapists) conduct proper assessments over the course of a few sessions. A more comprehensive review from a team of doctors with specialized knowledge will result in a more well-rounded and comprehensive understanding of each individual child’s case.
I feel that also parents need professional support to navigate this overwhelming news by giving them physiological support, which is crucial to their and their child’s well being.
For the time being there are couple of support groups like Warriors Parents [DM @ProudMomDiaries for contact/details] that gather at Kuwait Dream Center. This parents support group is run by myself and Ms. Dawn, owner of the Kuwait Dream Center, as well as the down syndrome association that focuses on new parents to children with down syndrome.
The growing need for support groups and greater comprehensive understanding of special needs in Kuwait is one of the reasons I started a social media account, @ProudMomDiaries on Instagram and Snapchat as well as the website, www.proudmomdiaries.com to help others during their journey, ask questions, find help and to share information and support.
I know how important it is to have a support for parents of special needs children and just so you know you are not alone.
Lots of love from Saja, Bader and myself.
Looking for resources for special needs in Kuwait? Check the KMG list of available resources here.