Year 2012 is coming to an end and we are praying that year 2013 will be a better year for all of us. Honestly speaking im starting to get worried for Uzair. He will be 5 next year, which means we have 2 more years to help him so he could enter mainstream schooling for primary school. Yes to most people, Uzair seems like any other boy who loves outdoor and very much adventurous. While a lot of people say not to worry, he will outgrow it ( alhamdulillah for the positive thinking, we take that as prayers for Uzair) but as parents, our instinct feels that Uzair needs the extra help to be “normal”. He is diagnosed with Attention Deficit Hyperactivity Disorder (ADHD) with some over laping traits of Autism.
We started sending him Early Intervention Programme (EIP), at WQ Park in October. Back then he was attending both, his kindergarten in the morning and EIP in the afternoon (since we have paid the term fees for his kindergarten). Logistic arrangement was an issue because i had to go back and forth. Uzair’s school finishes by 1230pm while elder 2 finishes at 2pm. Previously, i paid extra for day care, so i could fetch uzair the same time as elder 2. But since his EIP starts at 1:30pm, i now need to fetch Uzair first, send him for his EIP in Kelana Jaya and back to fetch elder 2. Although it means i ended up spending more time on the road, i do feel grateful that it is still possible to arrange the logistic, at least the time doesnt clashes.Kids at the EIP are from various background, I’m very impressed seeing the sacrifice made by other parents. They are parents from, Sg Buloh, Keramat and even Rawang. They would send their child and wait there for 3 hours till the class finishes as it is not cost savvy to return home . Waiting for 3 hours on daily basis surely requires lots of patience and sacrifice. at least my house isnt that far for me to go back and forth. There is always a reason to be grateful, always.
Innitialy our plan for next year is to only continue with the EIP since they fees would be a bit steep if we were to continue both. But looking at uzair’s behaviour during this school holiday, (he continue going for his EIP, EIP doesnt follow the same school holiday) he seems better of going to school morning and afternoon. He needs structured activities. Unfortunately i cant really provide this for him. He ended up sleeping in since he doest have school in the morning, and also his bed time is much later now. He throws tantrum whenever he doesnt get what he wants. We raised concern about his tantrum to his teachers, but the teachers have no idea of the tantrums coz that doesnt happen in school. Basically they are no elements/stimulus that trigger the tantrum in school. At home whenever he doesnt get what he want, he will have his melt down / tantrums moment. One example is, wanting to play outdoor at inappropriate time (i.e noon). Whenever anyone goes out / open the door he will want to run and play outside. if he try bringing him in, he will start crying and all.
We had his progress review with his teacher, therapists and doctors last week. Alhamdulillah syauqi is willing to stretch the limit and continue sending uzair both morning and afternoon. I can never thank syauQi enough for putting this as his number one priority. The fees for EIP and his kindergarten a year is bout RM32k. As much as i would like to supplement with home base therapy for uZair, i somehow still fail at juggling my time with uzair’s need and the other 3 needs. For this school holiday, im trying to improve athirah’s focus before the school reopens so she is more prepared for next year. that is another topic that requires a blog entry on its on.
Some may already know that uzair has this “stimming” behavior where he likes to knock 2 objects together. This could go on up to an hour plus. It is one the trait for autism. We tried to stop this behavior but he keeps on going to the kitchen to take new objects for him to knock. Common object would be the ikea cups/bowls and food container. Recently i had a friend who attended a Son-Rise programme in the State, who shared with me that i should join the child in his world – rather than force them to conform to a world they dont understand. This is to help solitary play become tandem play. To take part in their games before asking them to take part in ours. Maka dgn itu, the whole house akn berdendang with uZair :))
I had a friend came over the other day, i quietly passed two objects to her and told her to knock whenever uzair does. Uzair showed a positive reaction/facial expression. He usually ignores any guest in the house, but on that day, we could see at the corner of his eyes, he did look at my friend later on went nearer to my friend. My friend sang one of his fav song, he pause, stood infront of her till the end of the song. It may be just a minute or so, but such attention span from him was not something easy to achieve. We actually desperately need to have a room dedicate for his therapy, to enable us to reduce any distraction and such when therapy is in progress. Unfortunately we dont have spare room for that.
We are trying to be more strict with his Gluten Free Casseine Free diet but it really aint easy, especially when we go out, or visit friends and relative.But on my side, i try my very best to make it really GFCF diet as i believe diet plays a very important role
May Allah guide and ease our journey, praying that 2013 will be a better year ahead.
i’ve been reading ur blog for sometime and would like to share my experience.
i have 2 sons with speech delay – 7 and 4 y.o in 2013
as what u mentioned, i started to notice that something was not right when my elder son was not talking by 3. at the age of 3.5 i took him to ms kana in hartamas. she’s a clinical psychologist and runs a brain gym/ brain rewiring as my hubby calls it. alhamdulillah, he showed progress. he has dyspraxia.
he attended speech therapy in puchong, private tutoring in ss15 sj and small wonder kindy.
this year he will start standard 1 in brainy bunch. oh yer, he also attended ot in sdmc for 2 months only.
like u, i was worried sick ( still kot) on whether or not he could cope in normal school. i was advised by ms kana to send him to montessori based as he is more tactile. hence brainy bunch being the only montessori primary plus islamic, i decided to enrol him there. even normal kids under kssr system are having tough time, so i tak nak gamble what he has progressed so far.
adik dia pulak we just started him under therapy with ms kana and need to find speech therapist for him.
oh ya, both have been seeing dr rajini for a year now- mmg susah dapat slot
anyway, do email me if u want ms kana details.
January 1st, 2013 at 9:56 am
hi, i tried email you tp my email kena tendang balik
Hi Happy New Year 2013~
Just wanna say I am amazed by you & your hubby’s dedication and effort! You two are such amazing parents! Wish your kids flourish well under your great care…I am sure they will!
January 3rd, 2013 at 10:43 am
thanks for your kind words and encouragement, it is indeed emotionally, physically and financially challenging to us, husband is standing strong besides me to do the best we could. at times it gets upsetting when i google and come across various other therapy i wish to try but the price is just to steep. we are still googling for answers and treatment.
major issue is he behaves so well at his therapy centre but the minute he step home, he is back to his tantrum and all 🙁
sorry ada typo error kat email, cuba yg ni.
Salam Munirah, moga Allah permudahkan segala urusan you dengan anak-anak. Being a parent memang kita nak yang terbaik untuk anak-anak kita kan.
January 3rd, 2013 at 10:43 am
thanks for your prayers, moga we can help uZAir with his road to recovery
I feel you… my son pun ADHD jugak. Dan anak i pun i hantar ke WQ Park untuk OT & ST. I tak hantar untuk EIP lagi sbb anak i mmg tak boleh duduk diam langsung. Insyallah, kalau ada perubahan tahun depan baru we all planning utk hantar dia untuk EIP. He is 5 too this year. Insyallah, kita sama-sama usaha ye. Semoga Allah memberkati usaha kita, insyaallah…
January 3rd, 2013 at 5:26 pm
memula mmg we anta him for OT n ST at different place and after we got to know EIP is daily and consists of OT n ST in it, tu we terus enroll. sbb dah setahun lebih buat ST n OT btu not much imporvement. Now dah 3 bulan with EIP, his seated behaviour kat class mmg impressive, he has no problem duduk in circle. mase awal2 tu mmg slalu pegi ke window to cek i dah sampai belum. tp tu lah, bile die balik rumah he knows kot he can manipulate us, mula lah tak kena skit amok, walhal cikgu EIP kate die tak penah pun tantrum kat sek…
Assalam kak munirah.lama tak jenguk blog akak.huhu.igt tak sy dulu pernah beli tie rack dari akak:)
Saya doakan akak sentiasa sabar n tabah yer membesarkan uzair.uzair sebaya lana..lana pun autistic.Alhamdulillah sy tak tahu nak listkan byk mana usaha sy tapi anak sy dah bercakap([pelat sikit) n tau2 terus membaca.akak jgn putus asa yer.sy nak jemput akak masuk group Autisme Malaysia kat fb kalau akak belum join la yer:)