10 Things Every Child With Autism Wants You to Know

Last night I got mad at Eli, I went out for a little bit to buy something at the store and when I got back I saw his face all covered in tan colored liquid all up to his arm and shirt. When I went to his room, I saw my make-up wallet opened and the BB cream splattered on the side of his toy box. Not a fun thing to see especially that I've already washed him and prepared him for sleep.

With all this happening, I felt overwhelmed as I still need to wash the dishes but the thought of need to clean up first and take him to another shower. I gave him a bath again, but while doing it, I was saying things to him bout how mad I am for what he did. I was rough on him. He cried as if he understands that I am mad, I just don't know if he figured what I was angry about.

I changed him after his bath, and he lied on the sofa. After doing the dishes, I noticed he fell asleep on the living room. I picked him up and made him pick up all the toys that are scattered in his room. I helped him quite a bit with it. After all the toys have been packed away on his toy box, I placed him on top of the bed, and gave him praise for finishing the task. He smiled. I thought, "poor boy, horrible mama."

I kissed him to sleep and told him gently what my acting out was all for, though I never hear anything from him, but I can sense he has forgiven me.

I wish I can do better than just scolding my son. I'm glad to have found this video clip today. Having Eli makes me find things that I have to be reminded about. Patience is all I need to exercise. Patience and more patience and that I love him so much.

Brillance and Delays

The other day I was on Skype with an old friend who, prior to the Skype  chat, had known about Eli's autism diagnosis through our catching up texts. While on Skype Eli just suddenly turned up blabbing words he learned from his flash cards and so my friend exclaimed, how come you keep saying your son doesn't talk while I can see that he speaks. Look at him hes talkative!"

At that point I don't know how to explain to her how autism goes. Knowing my friend, I can tell she probably has not encountered someone who has been affected by autism ever at all nor try to research at all about it. Anyhow, I can forgive her for that, because back then I never do too.

My autistic son is living in the spectrum of a combination of brilliance and delays. No point in comparing him with the other normal kids. There's actually no point in comparing normal kids with any other kids at all! and yet, people still do.

For now what we have discovered is that it's easy to teach him concepts. The concept of shapes, and fruits, or parts of the body. He only talks when he reads or if he's identifying the things around him, like if he sees a car, he'd say "car," but you ask him, "What is your name?" and "How old are you?"he never answers. With this we all have to see to it he doesn't get lost. Him being a wandering kind is part of the issue.

Things are coming along for him because of his therapy and I hope that hell be able to find the connection between the things he knows and the spoken language so that he'd be able to communicate. But I also do not really know what developments he may have tomorrow, the next few, day, or the next few weeks.

We his family, will just have to take the journey willingly.

First Day of SPED School

It went well.

The schedule was from 9:00 - 10:00 am. Eli did a little crying as he is new to the place and his teachers are new to him.
He was given some little exercises, played catch ball, and did some table top activities, putting shapes in their slots. He was also trained to eat on the dinning table, wash his hands and clean up after himself. This will be a start of his routine.

I like the SPED school training for Eli. We decided he will continue his OT there as the facilities in SPED school are much better than back at his OT class where he is going right now. I Hope he will like it soon enough too.

He fell asleep on the way home so I decided to take a photo of him in the same clothes he wore in his class earlier. I just laid him on the bed when we got home. Bet he got so tired.

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We just got back from his last OT session. I also got his Medical Certificate to submit to the new school. He did so well today. He did cry in the first part of the class, but Teacher Chola said that after a while he stopped and they enjoyed doing their activities together. Things are going well for Eli! Behavior management, eye contact, and compliance are coming along!

General Conference October 2014

Conference Center of the Church of Jesus Christ of Latter-Day Saints

11/10/2014...

Since The General Conference of The Church of Jesus Christ of Latter-Day Saints is a re-broadcast event here in the Philippines, we always have the chance to take the whole family and watch the event at our designated Stake Centers. The mothers will have a nursing room with a tv monitor so that they can watch and listen to the words of the living prophets and apostles. 

But today we were at the chapel area with the whole family, and Eli being hyperactive and was roaming around a lot. Elder Neil A. Andersen, was at the pulpit speaking that time. We picked him up and made him sit beside us. I was pointing at the projector monitor and I told Eli to sit down and listen to the words of the living apostle. Then Eli said, "Jesus!"  

Yes, my son, he is a representative of Jesus. :-)

2 Years and 10 Months Old Reading and Identifying Colors

After some attempts, we were able to record a video of Eli reading and this is what we've got. The flash cards have pictures on them but he can read without the pictures too. I was just not able to make cards without pictures, next time will do.

We were just capturing the moment as they are.

On this second video, he is identifying the colors using pens.

For the record, he started with letters at 2 years and 5 months old, two weeks after that, he began sight reading words.

Yesterday's SPED School Visit

When I mentioned in my yesterday's blog post that people should do their research about autism, it was because I guess most people have no idea about the different classifications of autism. I'd also like to point out that not all people living with the spectrum are learning disabled.

There are people diagnosed with ASD but belong to the higher spectrum, and there are those that belong to the lower end of the spectrum. Those that belong to the higher spectrum are the functional ones, they even have higher IQ's the rest of the normal people, while those at the lower end of the spectrum, have difficulty in learning  or have a lower IQ than the normal.

I will not delve much about the different classifications of autism because, number 1, I am not a doctor, and number 2, there is google! It's where you can check other medical websites that can give you a better understanding of what autism is all about. Number 3, I am just a mom who is learning as much as I can about my son's condition so I can help him get through with this life.

Back to my story about yesterday. Eli and I went to drop by Teacher Neki's class at a San Fernando Elementary. She was the friend from sped school that I was talking about who would like to help me with Eli's Occupational Therapy. Since she still has a class, I got the chance to observe two of her students that are also living with the spectrum.

She introduced them to me, as I was able to observe the world of autism was interesting and amazing. Both of the students are non-verbal. I think they are both at around the age of 3 or 4 years olds. One of them is with a higher IQ, he can calculate numbers mentally in his head without calculating them on paper or with the aid of a calculator, like I would since I'm very bad at math. The other one is of a lower IQ, but is a good little independent boy.

I knew because as I was observing, Eli was roaming around her classroom and perhaps he is thirsty, so he found his way to the dish rack opened it and took a cup, and helped his way to the water dispenser. In the world of normal, this is a big no, no, one has to ask and wait for a permission, or wait for his turn... but teacher Neki, I guess she just let it go since it's Eli's first time and he's still learning the ropes of having a routine, I am too he he.

After the two boys ate their recess snacks, the boy with the lower IQ went to take the plates away to the sink, and started washing the dishes. right in the middle of it, he went to look around and walked towards the cup that Eli used that he left on top of the table. He

waiting for his turn with Teacher Neki

also went to soap them and washed to rinse. Then after that both boys were assisted towards the clothes rack where their polo shirts were hanging, they changed into them and put on their shoes, waved their goodbyes and left for home.

I thought wow! Its amazing to me that these special kids are better than the normal kids who just waits around for their moms to do things for them and clean up after them.

As for Eli, he was able to have a 30 minute table top activity with teacher Neki before we went home. I will be transferring Eli to her class starting next week where he will be able to continue his Occupational Therapy.

One of the 1st Encounter

So much has happened today. It has both been a productive and ironically a bit unpleasant one at the same time. I guess it come with the package of being a mom of a child with special needs.

best camera shot of Eli's doctor's certificate 

This morning, I took Eli with me at the DSWD office to claim his Person With Disability (PWD) ID . When we entered the office and told the guy at the desk of our purpose of coming. He handed me a form to fill out and asked for the doctor's certificate. i handed him his request and began granting his request.

As I was filling the form out, there was a part where you have to check the box as to what kind of disability the ID owner has. Autism Spectrum Disorder (ASD) was not written in one of the selections and I find that all disability selection that are written there are not applicable to Eli, so I didn't check any. 

After I handed back the form, the guy began to re-check on it and when he saw the part I did not answer, he just went on to check the box that says "Learning Disability." I thought, "Hey what the heck! My child is trainable! He might be frustrated and non-verbal for now but he is the smartest kid I know in person! His learning ability is beyond his years, he reads words even better like a six year old can when they begin to read. Just because my son has physiological disorder he is already considered having a Learning Disability? What the! He didn't even ask me so my son could be properly labeled on his identification card."

I was not able to say much about it I guess, I was at a loss for words. Things happened so fast before I knew it, he was informing me that the ID can be claimed next week on Monday or Tuesday, that's it bye-bye! 

While heading to our next appointment, I thought to myself  I swear if I will see learning disability on Eli's card next week as his label for being a PWD, I will have the guy change it to the proper diagnosis which is Autism Spectrum Disorder, and demand to put it there just like what was written in this certificate! Or else I will erase it myself, I know how to buy a correction fluid and will not be afraid to use it!

It's sad how children with special needs are considered by those who are deemed normal. I guess people need to do their research. I guess this is just the beginning of one of my first encounter with such people who may treat my child differently in the future and I might not be able to stop it, but as a mother, I will as much as possible defend my child no matter what for as long as I can. 

Different Not Less

When Eli was not yet diagnosed of his autism spectrum, I use to get this usual conversation among parents like me at home, church and other places:

Other person: How old is your little boy?

Me: He's 1 year old and nine months.

Other person: and he does not speak yet?

Me: No.

Other person: My son/daughter can already speak / utter a lot of words when he/she was one. 

Me: Oh, I don't know, maybe my son is just delayed in his speech. He'll speak in time (hoping)

Other person: Oh yah! some kids are just simply delayed in their speech, he'll catch up.

Now that we are aware of his diagnosis, I was only asked once so far the same question (it happened at his pediatrician's clinic) in which I replied: "No, he's just been recently diagnosed with autism spectrum disorder;" then the rest just followed. Thankfully, the pediatricians secretary didn't mind his sudden lying on the floor and loud short scream while waiting for our appointment.  

Eli has just been recently diagnosed but the doctor did not classify him yet as to what level of autism he is in the spectrum. Though I am not the kind of person who cares too much about labels, at this point in time. I would like to think that he is in the higher level, and this is why I think so...to explain Eli, he is non-communicative towards us or anyone at all. The only way he expresses himself is by grabbing me in the arm and place my hand on a certain thing he wants me to hand him, like the fridge door (signifies he either wants food or water) or our tv's power on button. 

But Eli can read. Concepts that is. He began to read at 2 years and six months. One night when my husband took our laptop to type he was reading the letters that are appearing on the screen. After a few weeks, he was sight reading words, some words are a bit biggy for his age like, January or elephant but nevertheless he can read! Even his OT teacher said that she find Eli a smart boy, and that he can be trained, so that makes me happy.

My son may not be termed as quote and quote, normal but he is not less of a person. His development maybe delayed in speech. behavior and social skill. but I am still so grateful the God sees him perfectly. He's simply different.

I might still get asked in the future of the same question, and may also be followed why my son is non-communicative. I'm already formulating this idea in my head as to how I should reply.

Other person: How old is your little boy?

Me: He's almost three..

Other person: and he does not speak yet?

Me: No.

Other person: My son/daughter can already speak / utter a lot of words when he/she was one. 

Me: Oh, but my son began to read words when he was two, did your child began reading at age two also?

Now how is that even possible? We'll, only Eli's Heavenly Father knows. I tried to record him in a video earlier today just to keep a memory of him reading at an early age, but he seems to be not up to it today and easily gets distracted by the camera phone. Maybe I'll get lucky next time, If I do, I'll post it on my next blog.

Pointers for Eli Part I

Last week Eli had his initial evaluation at the Center for his Occupational Therapy. It was pretty interesting. The occupational therapist assigned to him we can call as Teacher Chola, interviewed me first about my observations with Eli.

At first while she was interviewing me, Eli can't keep himself on his seat. He would stand up, go out of the cubicle and would join in on other student's activities. Later on, he was made to play. The first few activities were fine but the last 15 minutes, he was crying and screaming all because of a crayon. Since he doesn't talk or communicate, the way he would express himself is through a meltdown which can be mistaken as tantrum fits. 

Yesterdays session was a crying fit because of one little cookie he brought to his one on one class. and today, well, it was because he just simple doesn't want to do the activity his teacher is assigning him. 

So far, even in just a short span of time I can see some improvements on Eli. I guess it's more of me learning how to handle my son, and learning how to help him manage his behavior and compliance.

Here are some of the things I learned and been taking as pointers for Eli:

1. Know the reason behind the tantrum fits or the meltdown. The usual reason for Eli to cry is because he was not able to get what he wants or he might be having a hard time. For a child living with the spectrum, some tantrums are attention seeking. Let the child cry it out whatever it is. Just be on the lookout that he doesn't hurt himself. 

DO NOT CALL HIS NAME OR MAKE ANY SOUNDS THAT WOULD GIVE HIM ANY IDEA THAT YOU ARE CONSIDERING HIM BEING AROUND AND CRYING. He will eventually stop when he gets tired. Note: May take a few minutes, or a few hours and some painful to the ear scream. Good thing about Eli is he doesn't cry too long.

2. Obedience. Eli doesn't know how to obey commands. at least not yet. A child like Eli needs to be guided every step of the way. You simply do not talk to him and just point at things, he will not follow what you say, and doesn't know what or how to do what you just told him. 

INSTEAD, If you give him a task to follow, and he is not doing anything about it. Go to him and take his hand and guide him. COMPLETE YOUR INSTRUCTION. Example: If I want him to pack away his toys, and he's not following. I would go right behind him, take both his arms and guide it to a toy to pick up and put in the box, one by one until he will be able to store them all in, then, I will have him push the box near the wall where is is placed to park. There should be a clapping after for a job well done.

3. Compliance. Eli is easily distracted. He doesn't try to finish a task that he is doing if there are other things that comes up unexpectedly, he'll give the new distraction his attention. 

With this, a RE-ENFORCEMENT is needed. This could be in a form of a reward, Example: Since Eli likes to brush his teeth, (for some reason that he only knows, he asks for a toothbrush and a toothpaste even before meals, after and in between) I have to make him finish doing a certain task first before giving in to his toothbrush request, and that would be "finish eating your meal first then we brush your teeth." In this case brushing teeth is the re-enforcement / reward.

4. Prepare Eli if there are any changes to his routine / planned to do list. People living with the spectrum get anxious for any unplanned changes that occurs from their plans/routine. I made a mistake yesterday by not informing him that when we get to the center, he will be with somebody else except me the whole one hour schedule of his session. I guess part of his crying was because I was not in sight and he was dealing with a stranger who makes him do all sorts of activities.

5. Re-enforcement doesn't always have to be food. Children living with the spectrum are not dogs or cats or other animals, that you have to feed him a treat every after they obey whatever it is you want them to do. Their reward can come in a form of hug, a tickle or a praise, and sometimes it's their favorite thing. In Eli's case his favorite thing is either Baby TV viewing or toothbrush with a toothpaste... and chocolate milk.

This is what I learned so far and there will be many more things to come in the future. Good luck with me and my husband in all of this.

10 Things Every Dad Can Do

Most men handle the diagnosis of autism differently than do their female partners. Men are fixers – they’re supposed to fix things – yet our children with autism can’t be “fixed.” It’s not a disorder that is not easily, nor clearly definable, no two children are alike and finding appropriate treatment can feel more like a guessing game than a logical progression of events.

That said, there are things men can do to improve the quality of their child’s life, their own life, their relationship with their wife and other children. Here’s our top 10 list.

1. Be involved at home! The responsibility for the care of your child with autism does not rest solely on your wife’s shoulders, no matter how “busy” or “stressful” is your professional life. Ask about ways you can help. Sometimes just bringing home a bucket of chicken can make the world difference.

2. Accept that it’s not your fault. Moms especially feel this, but dads go through it too. Was it my genes? Something I did when I was younger?

3. Share in the decisions and responsibilities of the child with ASD. Often in a family with multiple children, the mom will handle all the needs of the child with autism, and the dad will be involved solely with typically developing kids. Our session stresses the need for husband and wife to sit down and create a Partnership Plan that allows mom and dad to both share in the challenges, the joys, the decisions and the responsibilities. Yes, this can bring up significant challenges that will need to be resolved. Be willing to break from traditional husband-wife roles and responsibilities to find what works best for your relationship – it can really help.

4. Make time for you and your partner to be together alone. Find the respite care; do whatever you need to do. You won’t be able to build a quality program for your child if you don’t maintain a quality relationship with your spouse. You’ll both survive, but not thrive.

5. Create a Family Plan. Define each of your roles in relation to the child’s care and your family’s physical, emotional and mental health. Involve siblings – they often have great compassion and are eager to help. Strive for balance as much as possible.

6. Communicate with your wife and family on a regular basis. This is not the time for any family member to keep thoughts and feelings bottled up inside. It builds resentment, blame and distance into the family unit. Make the effort to talk about things, even when it’s difficult to do.

7. ‘Network’ with other dads of children with ASD. Once a month, get together and go bowling, attend a sports event or play pool. Sure, you’ll end up talking about autism in one form or another. Knowing there are other men out there experiencing the same challenges you are is important for dads to learn, too.

8. Attend PTC (Parent-Teacher Conference), Seminars and school meetings! Whether or not it’s ‘fair’, most educational professionals sit up and take notice when a dad is attending the IEP meeting. Men hold clout. Furthermore, dads tend to help moms stay more emotionally even-keeled during the meeting, so often more productive work and cooperation happens. Go into each meeting with a plan. Know what you want to your child and have strategy going in – will there be the need for “good cop-bad cop” or do the school officials and teachers work proactively with you to help formulate your plan? Once there, gauge the attitude of the administrators and educators as well, and adjust your strategy. Remember, you both need to keep emotions in check, but passionate. Take a break and split away from the group if things start to get out of control. Reassemble your thoughts and come back into the meeting as a united front. If things are not going smoothly, pull back and say, “we really want to make sure that we come up with an IEP/PTC that really benefits our child, and gives them the best opportunities to succeed and grow.” We know sometimes this is easier said than done.

9. Try to keep autism from dominating your lives. This is a major problem for families. Often, the child with autism has sleeping, behavior, gastro or other issues and challenges that keep the family from doing typical activities. The sleep issues can cause dramatic problems as parents go weeks and even months without healthy sleep patterns. Parents and families tell us they sometimes feel like prisoners in their own homes as well; afraid to go to malls, recreation centers, restaurants or other public places because of the potential for problems to occur. We encourage families to create a plan that slowly introduces the child with autism to outside activities. Accept that there can and probably will be problems, but more importantly, recognize the need for the family to try and do these typical activities. Good school programs incorporate functional plans that both the child and family can work on to create opportunities for fun.

10. Enjoy your child! Autism is only a part of your child; it often brings unique, humorous and interesting attributes that can be celebrated. Be optimistic – good times are ahead. See the positives rather than the negatives. All it really takes is a shift in perception – yours!

Source : AUTISM/ASPERGER DIGEST MAGAZINE