Nzingha's Soapbox
Such a cute boy...
How did you manage this long post typing only with one hand? Supermama indeed!
half way through I was able to put him down which helped
Assalaamu alaikum,
He's so cute, masha'allah!
Assalamu alaikum,
Nzingha, I came across your blog almost one year ago and i read you since then "in the shadow". First at all I want to congratulate you for new baby born Umar, he is veery cute and for the lovely family you have. Also for your blog, i enjoy your writing.
Years ago, maybe 4 or 5, it was a new in spanish tv's and newspapers that a spanish guy with Down's Syndrome, named Pablo Pineda, had finished with success his studies at university. I wanted to share with you this and pass you few links about him, he is a good example of life for all us and especially for those families with a member with Down's Syndrome.
Most of the sites talking about him are in spanish (i'm spanish too,) but if you want to know more about him and i can help you with a "bad translation" or anything, dont hesitate to ask.
http://www.anzenberger.com/en/ar...icle/
10795.html
http://www.disabilityworld.org/0...3/il/
down.shtml
Congratulations 
Awww.. I love the pictures. He's so cute!!! Don't worry, typing one handed does get easier lol. I end up doing it a lot now...
I was wondering about DS in Saudi. Is the problem just resources (which I understand is a huge problem to go w/out) or is there more than that? I hope you can find what you need... I'm sure you will though.
It sounds like he's doing well though... I miss that little baby stage. I love the one we're in now, don't get me wrong, but still... I'm starting to look forward to number 2.
He is so cute mashallah!!! and i love the nick "spike"
you are a great mother, mashallah!!!
Assalamu aleikum wa rahmatulahi wa barakatuhu,
Eve,
I am Spanish too! (well, my mom is, my dad's Cuban).
I really enjoyed reading the articles you linked.
My mom has a friend whose son is in college too. He has DS.
We don't read about these things often. There seems to be many differences between one person with DS and another, from health issues to educational ones.
We all to need to be educated.
BTW Nzingha, he is sooo cute, masha'Allah.
My daughter's hair used to look like that too, then it turned curly, then wavy, now it's thick and mostly straight!
He is beautiful and lucky to be surrounded by so much love. I hope you find the support you need.
wa alaikum salaam Eva- many Children with DS go to regular school and even attend university. I'm set on Umar doing everything he can possibly do, it is just a matter of wait and see. Thanks for the links btw
Mama Kalila- I've been reading about DS in Saudi arabia, 1 in every 500+ births results in a child with DS. I've read a figure yesterday of 20,000 children with DS in Saudi and another 1,000 born in the Kingdom every year. With numbers like this one has to wonder what is going on when there are no resources, or local orginizations in which to help parents. I've read of one 'charity' orginization headed by one of the Princesses. Their desire is to show that such children need to be 'intergreated' into society. So one must ask.. where are these children? What is their status in this taboo society? how many are locked in their homes, or in hospitals as a way of dealing w/ the 'shame' a family may culturally feel about their child.
Jenny- that is how most of my childrens hair went. Started straight and soft, went to curls, than waves, now a thick mass I can barely get a comb through
Sharon- If I don't find the support I'll create it
Salaams N. Umar is so adorable mashallah. May Allah bless you all. I couldn't help but notice Mr.man also giving baby a bath, lol, my husband is just *scared* of doing it when our kids are really young! Yes, all children should be treated equally, I wish there were more resources available where you are.
I thought that was Mr. mans giving Umar a bath!
At first, I though, whose that in the skirt?
Then, I realized it was the Somali Man-wrap.
LOL
Assalamu alaykum,
You and your family are in my dua. This is my first time commenting. I wanted to share a resource idea with you regarding The Help Center in Jeddah. See the link
http://www.helpcenter.med.sa/ind...enter_e/e_home/
I toured the center several years ago while visiting Saudi Arabia. As a mental health professional, I was extremely impressed with their facilities, even wishing at the time for something so nice to be in the United States.
It seems as if they also have some kind of early intervention program. I recall seeing many children with Down Syndrome attending the school. Maybe check it out. I'll let you know of other resources as I learn more.
Thank you for explaining that... I like your comment to Sharon about if you can't find support you'll create it. If only more mom's felt that way right?
Masha'Allah, he is CUTE.
As to why you dont hear about Saudis with DS or other special needs, it is a cultural thing. My wife, a Saudi, made that very clear.
There is a complete lack of education in Saudi about special needs children and adults. Because of this superstition and nonsense prevails. Sometimes it is said that special needs people are possesed by the jinn. Often people will talk and say that the children are a curse from God sent to punish the parents because of bad things they have done.
Because of this these children, then adults, are hidden by the families and rarely taken out. I feel really bad for this.
I have never been in Saudi, but I have been all around the Middle East, and you'd be tempted to think there are no special needs people in the entire region. I can probably count on the fingers of my hand the number of times I have seen special needs people in the Middle East in the months I have been there.
Nzinghas,
I think DS is like autism in the fact that there are differing levels of issues and functionality. The diagnoses only tells you what the cause is, not what the outcome or level of functionality they will have. Time will show you what the child's functionality is and the level of their issues.
I know I compare everything to Autism, but that is the prism through which I see things because of our family. Some children are very high functioning, to the point you'd never know they have it. Others are very low function and will require help their entire lives.
The VERY important thing for ALL kids with special needs is to start them as early as you can. If anyone tells you to wait they are doing you a disservice. Children's minds are very receptive at an early age and they soak things up like a sponge, a special needs child is the same.
If you expect a lot of Umar, and put in the hard work and time to help him, you'll get it. So many people allow special needs children to just waste away, it is almost criminal.
Resources are very important. I attend a group for fathers with special needs children. No matter how well a father SAYS he is doing with the situation, the fact is that he has issues just like the mother, although since he is a man he will have a harder time dealing with it.
Counseling between mother and father is important, Manal and I do this. 80% of couples with special needs children end up in divorce because of the strain in the relationship so it is very important to take a pro-active approach to the situation. These kids already have a lot on their plate, adding in a divorce and separate families is something they do not need.
Learning that you have a special needs child is very hard. Most people go through a sort of mourning period. Mourning for the loss of the hopes and expectations they have. Sometimes it is immidiate, others times like myself, it didnt hit me until months later.
One must formulate a whole new s
I took a look at the Help Center. A few things struck me, children do not go to a class until after they are three, and then only three times a week in the morning? That is NOT enough time for many children and certainly aged 3 as a starting line is late.
They do not even start classes five times a week until the children are 4-5 years old? Again, much too late.
At the program our little guy attends, they start at aged 2 and can attend five days a week, if needed.
It is important that the system is tailored to the needs of the children, not that the children must tailor themselves to the needs of the program at the school.
If the child needs five days a week, they should get it. It should not be set in stone how many days a week each kids goes based on something as arbitrary as age. Each kid has different needs and to set the same limits for each kid is not right.
Class size seems to be another issue. They say their classes do not excede 12 students, they do not mention how many staff members would be a part of this class.
Here, depending on the children's issues, the classes are much smaller. A non categorical class composed of kids with many issues, will have 5-6 students with 2-3 staff members. A PAC class, for kids with autism, will have 4-5 students with 3 staff members, almost a 1 on 1 ratio. This, and it is a PUBLIC (free) school.
In the PAC classes the kids attend 6 hours a day starting as soon as they enter the program, often at age 2.
My son, Insha'Allah, will be entering the PAC class here in the next few weeks. He is currently in the non categorical class and goes three times a week. He is in the class with children with different types of issues, including one with DS.
Seems to me a place like this is going to charge you a bundle and then tell you how and what will happen to your child.
A good program needs to be more flexible and be more aggressive.
Sometimes I check your site, Abu Sinan, but I've never seen a single post about one of your children having special needs... ?? Hope you don't mind...
assalamu aleikum wa rahamtulahi wa barakatuhu,
I enjoy reading Nzingha's comments as much as I do her blog (almost 
) .
I don't know you Nuri, but I have been commenting on blogs for about three years now. Most of what people on the blogs know about me is what I share.
People don't share everything online.
I am just saying because sometimes people forget that the blogs only show part of a person's life.
Just as your "real-life" friends don't show all their intimacies, either.
I am sure that even Nzingha goes through moments that she doesn't share with us.
That's not to say that they don't love us.
Musulmana is right Nuri. Manal and I have thought about doing a post about it, we havent decided yet.
Honestly, the only reason I mentioned it was because of Nzingha and her situation. I thought I might have something, no matter how small, to offer. Special needs children and how they relate to the Middle East and wider Muslim world isnt something we hear much about.
There is at least one other blogger who has a special needs child that has only mentioned in comments and I dont believe has ever said anything about it via a post.
I think we will do one, it is just a question of when.
He's just delicious, N! I'm so proud of you!
Jazak Allahu khayran Abu Sinan for sharing your informative thoughts about the Help Center and the importance of early intervention. My intention of sharing the link was just to open the discussion of the existence of someplace in Saudi offering programs. I only toured the place briefly several years ago, so I do not have so much information about their full programs. My memories are that it was surely better than I expected. I agree there is a long, long way to go and grow in the field internationally. Allahuma facilitate the development of resources and open the people's hearts. Allahuma guide your family Nzingha and Abu Sinan toward the best resources for all of your children.
ok, sorry, I really didn't mean to bother anyone...
Abu Sinan- Thanks for the advice. I've done my morning, cried the entire day to the point where my eyes were swollen the next morning. Thing is, I didn't morn because of a loss (loss of a perfect child) but rather due to what will be given to him in this culture. What lack of opportunities will limit his life here. I'm sure there will be those days where I'll break down as long as I can get on with it and do what is needed for the family.
I did talk to another mother who has a son with DS it seems to be the norm to start a child off at 3 and only than part time. She did give me contacts in Bahrain, including a dr. that work from infancy onward (with the mother) exercises, what to look for, how to speak with him ect ect. So inshallah I'll find a house and move this summer and get started full time with those resources.
And speaking of Autism there is some school in Qatar that is geared towards autism that is even building a fab. research center that will be co-ordinating with international research centers. I saw it on the news.
As for DS and the jinni comments and anything else that is ignorant.. either I'll try to inform or take the 'bite me' approach depending on the situation
UmAhmad- thank you for the link I'm very happy to see there is a school. Even if it is limited it is a start in the right direction and that is just as important in order for things to progress in this country when it comes to special needs children.
Salam Nzingha
I really love the pic showing Maryam and Umar's in the baby tub. It's a beautiful shot.
I believe that Umar will grow up being so loving as he has got so much love, care and attention from everyone around him!
Salam... he really is gorgeous masha'Allah... poor chap having his 'manhood' displayed on the web though!
Insha'Allah you are able to find or create support here in Saudi or close by.
I friend recently returned to the UK because she was just unable to find some learning establishment suitable for her autistic teenager. It was a big decision for her but one that had to be made since in the UK and of course the US, there are associations and support group for every condition and disability whereas here in Saudi it seems that every disability is lumped together and the establishments don't give the right kind of support.
Du'as for you and your family, Umm Ibrahim
Dear Nzingha,
Congratulations! Umar is adorable
You may also want to check the recently established Down Syndrome Association in Riyadh:
http://www.dsca.org.sa/
Best wishes for you and your lovely family!
Areej- thank you for the link.
Umm Ibrahim- I have to prove the boy is circumcised since it was the first question my inlaws asked as they visited over the weekend.
lina- that pic was for grandpa who had a hard time believing Mariam would be helping in his nightly bath
Such an adorable boy. I wish you all the best in finding him the help he needs.
hehe
Grandpa has to believe how helpful Mariam has been... and he must have been very proud and happy too now!
Salaam,
My sister I wish you and you famly all the best.....Umar will get all the help and love he needs..InshaAllah
mashaAllah what a CUTIE!!! just wanted to let u know that we were in makkah last week i made duaa for you dear sister that Allah will make things easier on you..am making duaa for you here too in madinah..
Mash'Allah he is so cute. I just want to keep looking at him...OMG he is so cute....
Masha'Allah umar is so cute. As a mother of ds baby i know how you feel. My family were supposed to make hijrah this year but after the birth of my cute baby haroon 4 month ago everything changed .
I am looking to make hijrah to a country that offers early intevention. We live in Canada and so far we have attended different programs, every two weeks a developmental therapist and occupational therapist comes to our house.
I come across this school in qatar http://www.shafallah.org.qa .
Assalam alaykum, wow what a cute baby . May Allah taala grant you guys sabr for those who have kids with disability.
Umm Haroon - In Canada youll find more services, better schooling, and more aid. Here in the ME not as much it is something you have to work for. Umar is not at a PT every two weeks. She hasn't suggested an OT yet but I'm going to speak to her about that the next visit. I have contact with a wonderful ST but that is latter. School is my big concern, but quite honestly I'm preparing myself for homeschooling him if need be. Of course that all depends on his capabilities and of course we don't know that yet. Are you looking just to come to the ME or would you consider somewhere like Malaysia?
wa alaikum salaam Saada- thank you And I need sabr for my regular kids they are driving me INSANE. Umar is the easiest baby I've had mashallah I hope this is a sign of what I'm going to recieve from him all my life.. that is a blessing for sure.
walaaykum salam Nzingha,
Alhamdulillah here in Canada there are so many organazation that help people with disabilities. I attend a program that is 2 minutes from my house, I have lived on this street for 10 years and I passed by the building everyday not knowing that one day I will need there services. I used to wonder what Surrey place was, (name of the building) www.surreyplace.on.ca. It is funny how I notice little things now since Allah gave me haroon.
My husband loves the middle east, we never thought of malaysia but I can't rule it out.
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