Sunday, 22 November 2015

Baby to 10 years old

I can remember my girl's, vaguely...
My girl was born full-term, no implications.  During my confinement, I don't understand why my girl regurgitate so much and why she can't suck well from her bottle.  Her sucking on my breast wasn't strong.  After she was diagnosed, I found out from internet, it was due to her tongue thrusting.  Polyclinic referred my girl to KK Hospital for milk regurgitation at three months old

6 months old - cannot sit up or flip.  Told KKH doctors but they said it was too early to comment anything, some kids are slow
11 months old - FISH test, CT scan, EEG.  Seeing my girl being poked to draw blood made me cried. Forgot it was 2 or 3 person trying to get blood from her almost invisible veins.  My girl was struggling and crying while I was asked to wait outside.

19 months old - attended Rainbow Centre Margaret Drive
21 months old - able to flip
My girl was given physio and occupational therapies.  When she was almost 2 years old, after she managed to walk with strong support, we rented a K-walker every school holiday so that she could exercise.  3 months after she turned 3 years old, she was able to walk without any support, wide gait and both hands upwards.
 something like this, gently push and move forward.  Can't find the model that my girl used.  It looks more study/heavy.
My girls hates this, need to hold tight and pull along.

3 years old - first seizure.  She turned purple, jerked but eyes could trace the parents. Admitted to KKH.  Had CT scan and EEG.  Prescribed Epilim.  Till-date, has been drinking this syrup.  Heard some other AS were given tablet.  She had fever before her seizure started.

5 years old - Had a severe seizure, no fever, just walked too much.  That day, for convenience, I didn't bring her stroller because I can't manage her and a stroller on the bus.  My girl had involuntarily jerks that occurred throughout the night.  I was alone, hubby was doing his night shift.  Even though sleeping, my girl could be jerking.  Once a while she would be startled and cried.  I sling her, kept her close to me and we slept on a reclining chair.  Read from internet that seizure could be triggered by fatigue.  Learnt my lesson, ensure my girl has enough rest or I go out with a stroller so that she can sit and rest.... till now, 13 years old, she goes out on her push chair.  Many strangers/onlookers often gave my girl weird looks, some bluntly said "so big still sit on stroller".  I wish they could pretend we are invisible, otherwise, just nod or give us a friendly smile.

We joined Club Rainbow.  KKH doctors didn't tell us there's such an organisation.  I learnt from a mummy, same AS.  Also realised there's a CRS desk in KKH, near Social Work dept .... after wasting so many years!  Once my girl hit 5, she was kicked from EIPIC to PCMH.  I realised some others 'graduated' when the student hit 6 but mine was earlier.  Reason: to make way for other EIPIC new students, my girl was doing quite well.  Ever since my girl left EIPIC, her progress were not noticeable.

6 or 7 years old - transferred my girl to Rainbow Centre Yishun Park (YP) because it was tough to squeeze into the crowd mrt ... office peak hours.  Ever since we left Margaret Drive (MD) school, most of her therapies were on waitlist.  By the time was managed to get weekly therapy, her progress was greatly slowed, we lost the momentum.

Adaptive Bikes   Learnt to climb stairs and cycle.

As my girl gets older, it became very hard to train her, get her to do things right or be given weekly therapies.  Soon, her therapies were cut from weekly to alternate week.  Occupational and Speech were removed for the benefit of other students.  I am not working, how to enrol my girl for private therapies?  Govt isn't giving subsidy for private therapies or equipment.  Am I suppose to sell my HDB flat to get money?  One special needs family sold their condo at a loss and got themselves a HDB flat.  They converted one room into a therapy room.  Some parents sent their kids for external support eg Glenn Doman.  KKH advised us not to go for therapy session when they found out my girl was attending special school.  Anyway, the therapy i KKH was once a month so at that time (still EIPIC), I was fine to be out because the therapists and class teachers were fantastic, really helped a lot.  At least my dark days weren't that bad.

At this age, I think her first milk tooth that dropped one year ago, grew!

10 years old - YP stopped all my girl's therapies.  After repeated feedback, YP placed her in group consult, meaning not one to one but a few students in the session.  Attending YP was something I felt like killing time.  My previous ex-filipino maid was of great help during employment.  She learnt from therapists and teachers and enforce work time at home.  Due to her misunderstanding or sudden change in personality after taking home leave, she left me.

My advise to parents
It is fine to cry and trying to accept such a child.  Denial would cause delay in receiving training and therapies that will help the child to learn and grow.  Don't rely on special school if you are financially capable, give him/her external support.  If not, learn from teachers, practice at home, daily.  The momentum and regular practice is important.  Don't count on govt, govt and its offices look at your monthly income and often give excuses of insufficient fund.  In case you didn't notice, govt is fond of giving lip service by throwing out goodies but not everybody benefit from its policies or special grant.  The older your child gets, the lesser you can tap on the fund or grant.  Early intervention is important, as long as your child is diagnosed with special needs!


This is what I've copied from another AS parent:
Scotty was the product of a full term uncomplicated pregnancy.Weighed 7lbs 15 oz and 19.5 inches long.  Had some jaundice and difficulty regulating temperature.Had a lot of difficult breastfeeding switched to formula.  Still had difficulty and it seemed like more formula dribbled out of his mouth than went in but he was gaining weight and content.

2 Months- starting laughing
3 Months- developed huge contagious belly laugh, turned towards sounds and made gurgling noise when "talking"
4 Months holds toy, hold bottle, reaches for objects, put objects in mouth, started solid food, slept all night
5 Months rolled from tummy to back, could sit up with help
7 Months rolled back to front, play peek-a-boo
9 Months Says "AH", sit alone , waves bye- bye, rolls all over house as a means of getting somewhere
12 Months starts to G.I. Joe crawl favoring right side, eats finger food, drinks from a cup, stands leaning on furniture if we stand him up, shakes hands, high fives, follows simple directions like..Get a diaper, or find the dog...Screams AH to get our attention. Can identify eyes , lips, nose and mouth, points to pictures in a book like duck frog tiger and all the Sesame Street characters ( This is just a sample of his cognitive development)
G.I. Joe crawling 13 months
14 Months first tooth
16 Months pulled himself to standing
17 Months started climbing on furniture and crawled on all fours
21 Months walking around furniture and climbing up and down stairs taking a few steps
23 Months he started walking unassisted.  He had a typical Angelman's wide gait arms up.
2 years started saying "B" sound.  2 years 10 months  he could feed himself, play basic games like patty cake, Itsy Bitsy Spider etc.  Unfortunately this is when his sleeping problems also began....BAD!
3 years noticed how incredible his memory was for people and places.  He could ride a big wheel and a little red trike, he was taking horseback riding lessons and competent in basic sign language-eat, drink, more, please, thank you , sorry, to name just a few.  He probably had about 20 signs at this time.
12 years toilet trained and mostly dry at night


Scotty Today
Bathroom Issues
Those without Angleman kids might want to skip this...trust me on this unless you like to talk about poop!
This is ALWAYS the first thing everyone wants to know.  He is completely trained and does not use a diaper.  He sits down to pee. He still needs help pulling up his pants, washing his hands and wiping his bottom, but he is pretty much self sufficient.  He occasionally wets the bed, but not very often.  Our biggest struggle right now is getting him to wait to pull his pants down until he gets in the bathroom.  It is almost as if he thinks I have to go and drops his drawers wherever he is at the moment.
It took us about 10 years to train him and it wasn't pretty.  The worst of it lasted a few years when he decided to use his poop as an artistic medium and we would walk into his room and everything was covered in poop including him.  That was absolutely the worst, grossest thing we have ever had to deal with.  Not something you can talk to your friends about that's for sure.  My mother designed pajamas that zipped up the back so he couldn't access it, but of course he was able to bypass any attempt we made to fix this situation.  Finally he just stopped. Thank the Lord!

Sleep
Or lack thereof I should say.   Scotty stopped sleeping when he was two and didn't pick it up again until he was 8 and that was with the help of medication.  For those years he slept 4 hours a day...A DAY!  And they were never in a row.  We were the walking dead and he was the happiest sleep deprived human I have ever seen. We tried absolutely everything.  Sleep training, music, warm baths, exhausting him, a water bed (which actually worked until he figured out how to take the plug out!)  What finally worked and for the most part still works today even though we still have nights or a series of nights when he barely sleeps at all and I must say that was a lot easier to handle when I was younger.  We medicate him about an hour before bed.  He takes clonodine and one benadryl that usually gets him through the night. He has a TV/DVD/VCR in his room and weirdly enough he knows how to work it.  We used to put a gate up in his room until he learned to climb over it, now we lock his door.  It is for his safety, if there is an emergency we need to know where he is at all times.  I also worry that he will leave the house.  We have locks and alarms but I swear he is a reincarnated Harry Houdini and is quite an accomplished escape artist...just ask the neighbors:)  Bottom line, we can usually get a decent night sleep although we will never be able to catch up for all the lost hours over the years.

Eating
Scotty will eat anything and everything, we have all cabinets in our house locked...although he can get in them if he tries hard enough.  When he was younger he would literally eat until he threw up.  He has no button that says stop you are full, hence the locked cabinets.  As he has gotten older that has changed he doesn't eat nearly as much as he used to and will get up from the table when he is full.
He can feed himself with a spoon and a fork.  He still needs his food cut for him.
His favorite foods are bananas, pizza, salad, hamburgers,cookies, donuts and water.  He really will eat anything.  The only thing he turns his nose up at is bacon.

Dressing
Scotty gets a shower everyday as soon as he gets up.  We assist in all aspects of his grooming.  He washes his hair, dries himself (mostly), brushes his teeth (we redo it), puts on deodorant, and my husband shaves him and cuts his nails.  We lay his clothes out and can completely dress himself.  He can't do zippers or buttons.  We have velcro sneakers and he can put those on, usually on the wrong feet.

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