A bump in the road

asd moms are  the most misunderstood people in the world. a lot of people belittle what we have to go through everyday. the tantrums, the battle of getting a slot from the speech therapist, scheduling of supplements, toilet training and the list goes on. little do they know that asd moms are human beings too. we get hurt and we cry too much. we get over sensitive when other people talk about on how our kids behave badly and questions us why we ignore them when they are on the floor and throwing everything they get their hands into.

i found this article very touching and the author has amazingly expressed what i wanted to shout out to all people. i am happy that i dont have to write a long story just to say how pissed off i am when people are so insensitive and uncaring. pls read the link.

http://www.ageofautism.com/2009/07/autism-perception-a-bump-in-the-road.html#comment-6a00d8357f3f2969e2011571511088970c

20 reasons why my daughter is perfect

1.     Her smile in the morning brings out the sunshine in a gloomy day

2.     She is willing to learn no matter how difficult it is for her and no matter how long it takes

3.     She makes the whole family celebrate every time she learns a new word

4.     She is not selfish, hurtful and demanding

5.     She taught me that happiness can also be found in solitude and silence

6.     Though it’s not easy for her to look at people in their eyes, she does it coz she knows it’s the right thing to do.

7.     She waves at people who say hi to her

8.     She brightens our living room when she dances.

9.     She is me and my husband’s favourite topic.

10.  She strives so hard to catch up cognitively with kids her age.

11. She hums a song that no one else have heard of.

12. Her disability made me realize that im special in God’s eyes. Out of 110 moms, I was chosen to receive a beautiful angel!

13. She knows that we have to spend money on her therapy and supplements so she never demands for toys and other personal things.

14.   She tries so hard to say anything coz when I hear one, I go crazy!

15. If she wakes up in the middle night, she will force open my eyes. It’s like telling me “mama look at me im awake, pls put me back to sleep”

16. Her tantrums had taught me on how to stay calm.

17. She taught me that playing pretend and making flashcards are more meaningful than wasting my time on facebook.

18. She taught me that there is a thing called unconditional love.

19.She is trusting, carefree and always happy.

20. She is my daughter and no matter what she will always be perfect to me.

being in an inclusion program

when the school principal informed me that my daughter will be in an inclusion program, i was thrilled. i have been wanting her to be in a group of typical kids because one of the skills my daughter lacks is social. i remember when my daughter was having a one on one session with her speech therapist then suddenly 2 boys came in and took some toys from the room. my daughter started screaming and throwing the pegs on the table. she doesn't know how to behave when there are kids around invading her small little world. 
it's almost a month now since the first day of toddler class. there were 5 kids in the class. 2 kids were special. 1 is my daughter and the other 1 has GDD. on thursdays and fridays 1 cute kid with DS join their group for an hour. everyday the school will provide snacks for them and they will eat together. sometimes i will hear my daughter screaming during snack time. when i ask her teacher what happened she said its because she is teaching her to eat the food given to her and not to grab her classmate's food and sometimes she gets so excited when the food is served and don't want to wait for the teacher. when she's asked to sit and wait then she will try to manipulate her teacher by crying. of course the teacher will not give in that's why there were quite few times when my daughter was dismissed late because she ate late. after eating, they will go to the toilet to brush their teeth and wash their hands. 
now i can say that my daughter can tolerate being with kids in a room. one time, i ask her to hold her classmate's hand and go inside the room. she did it. now she don't mind being too close with other kids and i think she is happier being with them than having an one on one class.

developmental review

On June 14 we went to PCMC for my daughter's first reevaluation. it has been 6 months after her initial evaluation with her new neuro dev. we were at the hospital 3 hours before our appointment because we also had a schedule with her neurologist. 

when we entered the clinic, my daughter looked around and saw plenty of toys. i believe kids find it more comfortable when they see toys in clinics, but my daughter is not one them. she likes her neurologist's clinic more than her pedia and neurodev's because there's nothing in there for kids but a pack of crayons and coloring books. the neuro dev's clinic was colorful and attractive but that could not make my daughter stay inside without resistance.

during the task, she exhibited whining but eventually she complied with the activity shown to her. the evaluation per se took around an hour to finish. here is the result:

Chronological age at the time of assessment:3 yrs and 9 months

developmental domain       Estimated Developmental age

                                                           previous                current

Gross motor                                  1.11yrs                  2.7yrs    

Personal-social                          1.2yrs                    2.2yrs

Fine motor                                    1.10yrs                  2.5yrs

Hearing and Speech                 9months                11 1/2months

Perfomance(nonverbal)          1.3yrs                    2.9yrs

Practical reasoning                    n/a                         n/a

based on the result, she's functioning at 11.5months to 2.9yrs level and gains were noted on all domains. her improvement was significant on the performance(nonverbal) area. it was amazing that in a span of 6 months it jumped from 1.3yrs to 2.9yrs. even her doctor could not believe it that she have to recompute the result to see if there is any error. but there was none. i know that the heavy metal thingy has affected her cognitive skills big time and now that she is detoxing, im happy that she  slowly recovering on that area. speech is where my daughter is having a lot of difficulty .even her speech pathologist was devastated when she heard of the result. so now we are working doubly hard to improve her speech and her communication skills.

 as for the doctor's recommendations:

1. continue present therapy intervention: OT and ST
2. continue inclusion program with pull out session to increase to 3x a week
3. may start formal Sped tutorial 1-2 times a week to facilitate educational needs
4. encourage follow up intervention at home
5. engage in other activities at home:outdoor-pedaling a trike w/manuevering,bouncing  and catching ball and standing on 1 leg with no support for 5 sec 
6. listen to nursery rhymes
7. art activities: painting, scribbling, cutting paper, threading beads, molding clay of different consistency
8. play with other children
9. eat by herself, put on clothes  

in a matter of 6 months she has gained so many abilities. she can now jump from point a to b, blow bubbles, match upper case and lower case letters. eat with spoon and fork, undress herself. my daughter still has quite a number of autistic traits. she still has sensory issues that we have to resolve, potty training that we have to work hard on, speech that she has to learn, but with dedication and prayer and lots of love i know we are on the right track.i just wish that time wont fly fast so that she can learn all the things she has to learn while she's young.

how to toilet train kids with special needs

i have mentioned in my previous post how upset i was when my daughter wet herself for a few times in one day. it was very stressful after training her for a few months and now it's as if we never started it at all. i found this great website on how to potty train our kids by age of five. well, i guess it depends on the readiness of the kid. some are ready at five and some at later childhood. my daughter is 3.8 yrs old but she will be mainstreamed this coming June so we really have to work hard on this potty training. i will start teaching her again tomorrow and my target: no accidents until June 4 by then i will be confident that she will be able to carry on this skill even when she's in school.
Preparations
You will need:

• At least a couple of these readiness signs: The ability to follow simple instructions, dislike of wearing soiled diapers, regular bowel movements, or being able to stay dry for at least two hours.
• 5 (or more) pairs of sweat pants for your child that can be pulled up and down easily, without snaps, buttons or zippers. Buy the kind that are absorbent, yet will allow your child to feel wetness. These will save you from huge clean-ups.
  
• Lots of pairs of underwear (not the pull-up diapers).
• A child-size potty chair, or a stepping stool to the toilet.
  
• A motivator/reward, such as favorite candy, toy, or book.
• Three days where you can devote a good amount of your time and focus.( important)

The Procedure

1. Dress your child in her new underpants and sweats, explaining that she's a big girl now. Let her freely drink her favorite beverage. Allow her to go about her daily activities, but watch her carefully.
2. When she wets herself, say "Oh Dear! Potty goes in the potty chair!" (Or something similar.) Place her hand on the wet spot of her pants while you say this. Then take her by the hand and walk to the bathroom.
3. When you arrive at the toilet, you will guide her through the following routine, breaking it into five steps: Pull down pants, sit on the potty, wipe clean, pull up pants, wash hands. (Say those short phrases as you help her do each step.)
4. Once her hands are washed, you will lead her back to the exact spot she was standing or sitting when she had her accident. Start over as though the accident just happened. Place her hand, again, on her wet pants. "Oh Dear! Potty goes in the potty chair!" Then you will walk her back to the toilet and go through the five steps again. Repeat this entire procedure five times. (Yes, five.) Your child may cry or resist, but be calm, pleasant, and firm. After the fifth time, change her clothes and let her play.
5. About once every hour or two, ask, "Do you need to use the potty?" Even if she says no, best to take her there. Sit your child on the potty chair for ten minutes. If she has success, give the motivator...candy, a favorite book, etc. Cheer and make a big deal out of it. If nothing happens, say, "Okay, we'll try again later."
6. Anytime an accident occurs, follow steps 2, 3, and 4.

it's almost the same procedure as i did with my daughter, however, there was no step 4. i guess that is the most important part, consistency with the procedure. so i will be doing this all over again with my daughter tomorrow and hopefully accidents will be lesser on the coming days until she can independently go to the toilet all by herself. =)

bad day lesssons

today is yet again another bad day. a kind of day like most of my other not so great days. the difference is today i pitied my self, angry with my self and envied others. why is life have to be unfair to me and unfair to my kid?
maybe the weather is contributing a great deal to what im feeling right now. its such a hot day and so is my temper. my daughter peed on her shorts for a couple of times today and i got furious.  i have been potty training her for a few months now and still she wont go to the toilet by herself when she has to. to my disappointment, i raised my voice at her. i scolded her and i'm not even sure if she understood me. then i got angry to myself. how i can do that to my daughter? she's only 3 and of all the people in the world, i'm suppose to be the one who should understand her.
late in the afternoon, i taught her to jump. you heard me right, we have to practice on how to jump. i know this is a basic skill but my daughter doesn't know how to jump from point A to point B. it is so stressful when i think of other kids who don't need to learn this skill. i know its wrong to compare her to other kids but when i get frustrated i do that. i also envied other moms who can go to the mall not worrying that their kid might run away while they are busy buying something or they can have a pleasant meal without their child throwing tantrums. these are just some of the simple things i wish i could do with my daughter.
im not a perfect mom. i get tired, i get irritated, i yell and i lose my head. everyday i have to remind myself that life is short and i cant waste a day on being grouchy. everyday i pray for guidance and patience. i'm glad i have known some moms from the school who reminds me that im not alone. it's a breath of fresh air when i talk to them coz i know they are sincere when they tell me they understand. 
today, before my daughter fell asleep i told her how sorry i was for losing my patience and for scolding her. then she moved away but i followed her. i wanted to make peace with her. then she looked at me and covered my eyes to play peek a boo like nothing happened. she was happy and carefree. well i guess this day is not so bad after all. i'm my daughter's best friend and at the end of the day she can forget everything and still willing to play with me...the joy of childhood.

Seizure and Autism

during our initial evaluation with the dev ped, she required my daughter to undergo EEG evaluation. 35% of kids with autism develop seizure which may not necessarily begin in early childhood, but during the stage of adolescence. i dont see any grave signs that my daughter has seizure so why bother traveling from pampanga to PCMC to get EEG when i know she doesn't have one? so i postponed my doctor's request. BIG MISTAKE!
two weeks before Holy week, my daughter was playing on the second step of the stairs while i was doing my research on the internet. then she fell and got a big bump on the forehead and some bruises near her eye. i told myself not to panic. look for signs. vomiting, headache. loss of consciousness? none. but still my gut feeling was telling me, go get an EEG. that was my wake up call. the next day i called PCMC for an appointment.
after 1 week the result is out.
IMPRESSION: this EEG is abnormal showing focal epileptiform discharges seen to come from both frontal regions in sleep. The awake background activity is within normal limits for the patient's age.
my daughter doesn't show any signs of seizure yet the results revealed that she is having abnormal spikes in her brain during sleep.  we were then referred to a child neurologist, Dr Jose Robles. According to him some seizures are so subtle they are hardly noticed. some looks like they have spaced out and some experience a small amount of jerking on their arms and legs. i asked him if it is possible to develop a full blown seizure when she grows up, he said yes it is possible that is why medication has to start early so as not to trigger the seizure and she has to be on it for 2 years. 
i did my research on frontal lobe seizure and i found out that frontal lobe seizures usually last less than 30 seconds and often occur during sleep. signs and symptoms of frontal lobe seizure may include:

• head and eye movement to one side
• complete or partial unresponsiveness, or difficulty speaking
• explosive screams or laughter
• abnormal body posturing, such as one arm extending while the other flexes, as if the person is posing like a fencer

• repetitive movement, such as rocking or bicycling pedaling

 my daughter has 3 of these signs. could it be the reason why she's not speaking, laughs inappropriately and repeatedly closes and opens cabinet doors is because she has untreated seizure problems? if i treat her seizure could i possibly be treating her autism too? im crossing my fingers and hopefully to see positive results as we start her medication.