Some Good News And Not So Good News

I'm finding it typical when dealing with issues of disabilities in the Gulf region is that just when you feel you have made a step forward you learn you have taken two steps back. It is a frustrating feeling to think your getting somewhere even if it is in the smallest of ways only to find out that you suffered from a moment of delusion. I admit it is not something I'm going to get used to for it is difficult for me to understand in an area with monetary resources that outdo many areas in the world that they actually lack the ability to proceed in a positive well balanced way when it comes to so many issues, disabilities not being the only issue.


I should start with the good news. I found a super fabulous Pediatrician here in Bahrain who made me feel like I was possibly not in the ME for a time. It took me a while to get used to the sterile environment of Saad hospital and their seemingly placid staff of Drs who don't always exert much personality during a routine visit, unless you go to them for a while. While it doesn't take away from their doctoring abilities it isn't something I'm used to when I think of pediatrics. For in pediatrics I, an adult, am not the patient it is a child. In order to assess a child I feel you need to be on the child's level in some way. Part of it includes the Dr's office, Saad hospital is sterile and lacks anything that says children frequent the place.


As I walked into Umar's new Pediatrician I first noticed the colors and imagery used to help the child to feel relaxed and at times keep his/her focus on something interesting other than a Dr. probing him/her. Pictures of smiling children were placed on the wall, an exam area was present amidst brightly colored murals on the wall and wind chimes that made noise to calm a crying child. Everything needed was right in the office, no nurse came and carted us off for a weighing, temperature check and measurement before seeing the Dr which only gets a baby crying before the actual visit and it is down hill from there.


The entire visit went well with a friendly Dr who also handed me some useful contact information. She voiced her views on what she saw with programs and aid for children with Down Syndrome or the lack there of and I appreciated her honesty. We did speak briefly about the Down Syndrome Association of Bahrain in which she stated her view that I wouldn't find much help there. In fact if your seeking photo opportunities, or a way to get a major amount of donations and at the end of the day you have a fancy building and nothing really for the kids than that is your place. I nodded in agreement as I found them utterly useless when we called for an appointment when Umar was a newborn.


The Dr was impressed with the activity of Umar, between his strength what he was doing and how he wasn't what was 'typical' of many children his age with Down Syndrome made us both wonder if he has Mosaic DS after all. This isn't the first time I've wondered about this as I've been sitting with the books reading and saying well that isn't Umar. He was never a floppy child, never overly sleepy in fact he was awake more than most babies, he has strength and movement and although is delayed in comparison to my other children not really all that behind of other children his age.


Of course this doesn't mean he has Mosaic DS in fact there is such a range of possibilities for children with DS it is hard to say A + B = C because it could actually just as equally = B as well. I'm not sure it really matters all that much if he does have Mosaic DS past his speech therapy. It isn't like the world will look at him and say "Oh he is Mosaic not Trisomy so it is all very different" for when the world looks at him they will only see DS.


We walked out of the office feeling like we just had a trip to the US and saw a Dr in an environment that we were used to. It wasn't so stressful for Umar who usually isn't pleased about the entire event. It has been years since we walked out of a hospital saying "I enjoyed that" and we did. We also came out with two contact numbers, one of which was for a much needed physical therapist.


I was able to see the physical therapist (PT) this past week and I was happy enough to cancel all of my further appointments with Bayzura. As much as I liked Bayzura and what she did with Umar I simply couldn't support Saad with their price increases. The major thing I enjoyed with this PT is that I was told what to do at home, how to incorporate toys and easily to obtain objects to aid my little man along in his development. It won't be an every week PT appointment but rather a once a month appointment to check up on what I'm doing with him and his progress.

I was shown ways to work with Umar and ideas of how to incorporate even the smallest of things that we mothers tend to take for granted as a way to help Umar with a specific task. I was given some contacts one for another mother of a child with DS, one for a place to learn baby sign language, and a list of things to get for Umar. Proper shoes, which I'm still looking for, a walker with wheels, Johnny Jumper, specific toys and a cushion I need to have reproduced that helps Umar with various positions. It was great to get a lead on some things that are available here in Bahrain which I wasn't aware of and I'm looking forward to meeting some other mothers in the area who are going through or have already been through what I am.

Since this is a PT that has been in the area for a while I also received the low down of the special needs services in the area for children and it wasn't positive. Basically what it comes down to is a hopeful attempt to get Umar into a limited number of schools with the goal of getting to 6th grade in this country. Schools are not inclusive here and any private school, not matter if Umar could keep up with the class, would not accept him. So I'm looking at eventually returning to the US with Umar in about 9 years if the options remain the same here.

The school that I was excited to find, although it cost 70,000 SR a year also is not without fault. For one she told me paperwork is their down fall IEPs are not done, progress reports are not given, written goal setting is not the standard and "when you pay that much you should have this". And I agree, IEPs or something which gives me a clear break down on Umar's goals, and how we achieve them is something I would like to see. But it isn't necessarily a deal breaker but the next piece of information might be.

The school which was not supposed to be open to children with autism has accepted some students who do have autism. There are several schools in Bahrain that deal souly or mainly with autism and this is great but it isn't a school I would choose for Umar because he does not have autism. I would assume that the educational approach needed for children with autism is very different than a child with DS. And I would not want Umar to be less focused upon because more attention is needed with children in the class who have autism especially paying 70,000 sr a year in tution. Or if the skills focused upon are more related to children with Autism rather than DS.

Now that might sound horrible for me to say but I feel the same way about inclusion in schools. I do feel that children, when being included with regular classes, should be able to stay with the class and if more focus is needed on a particular student with learning problems than the rest of the class looses out. While I am very much of the view that all children should be educated and no parent should be left with wondering how to give the best to their children when they have a learning disability. I am not one who agrees that other children should miss out on their education either. I feel the same way with children who have behavioral issues and take focus off of education needed for all. And no I don't have all the answers to these problems.

The therapist was also very against bilingual education which is something I've been researching about. She tends to believe that children with DS shouldn't be subject to a dual language education like that of English and Arabic because they tend to have a hard enough time with one language. She did say that verbally learning more than one language was ok, that "he'll know what as salaam alaikum is ect" but even much of it may be gibberish to him. Although I might agree that scholastically that Umar may have to focus on one language, of course we can't determine that just yet, I won't settle that he won't know Arabic as a fluent language just like English.

For one as much as our house is an English speaking house it is also an Arabic speaking one. He will be brought up hearing and being spoken to in both languages. He won't have a single language reference and each language will inshallah be just as natural to him as the first. I believe she spoke as a monolingual individual who tend to think in one language and translate in their minds to another as it is a 2nd learned language usually latter in life.

Other issues related to this is potentially cutting him off to his family who for the most part only speak Arabic. And there is also the issue that is the language of the Qur'an. To willfully cut him off even in some small way from either of these would be just wrong to me. I would love to hear more from bilingual households raising or having raised children with DS and how it all went. Not much in the way of studies have been presented on this issue. One just assumes a child with DS can't do, it has been that way for far to long I for one choose to believe Umar will do until proven otherwise. In my mind he will learn two languages both verbally and academically even if I have to go about it differently.

As we are keeping score, that is two steps forward with 1. finding a new pediatrician and 2 finding a PT but also two steps back with 1. early resources still being very limited even more so as I have no OT at the present time and it doesn't look like I'll find one and 2 education for Umar is going to be a tough reality with very few options and none when it comes to bilingual options.