HEAVEN'S VERY SPECIAL CHILD

A meeting was held quite far from Earth!
It's time again for another birth.
Said the Angels to the LORD above,
This Special Child will need much love.

His progress may be very slow,
Accomplishments he may not show.
And he'll require extra care
From the folks he meets down there.

He may not run or laugh or play,
His thoughts may seem quite far away,
In many ways he won't adapt,
And he'll be known as handicapped.

So let's be careful where he's sent,
We want his life to be content.
Please LORD, find the parents who
Will do a special job for you.

They will not realize right away
The leading role they're asked to play,
But with this child sent from above
Comes stronger faith and richer love.

And soon they'll know the privilege given
In caring for their gift from Heaven.
Their precious charge, so meek and mild,
Is HEAVEN'S VERY SPECIAL CHILD.


by Edna Massionilla
December 1981
The Optomist- newsletter for PROUD
Parents Regional Outreach for Understanding Down's Inc.

We went out today to have little shopping. Next week is the first birthday of our little girl so we made this day for Gareth because I planned of buying him new clothes for the event.

I don't know if Gareth will participate in his sister's event so I rented an inflatables just to keep him busy while we are waiting the guests.

So today we went to Greenhills and bought him 2 poloshirts. He is well behaved at Greenhills and so proud of him. Some kids with autism can't stay longer in crowded places but Gareth can take it. He use to stay at the mall, coffee shops and even cinemas.

As a mom, I always see to it to let him go out with us always so that he will get use to it and aware of the environment. My usual problem is sometimes he don't have awareness of danger. He is not aware of the other vehicles in the parking lot so we really can't let him go on his own. Most of the time hubby and I are holding him both just for his security.

Since Gareth attended therapy he is not as wild as before. He is learning to follow simple rules. If we are walking at the mall or at the streets he always reach our hands and wants us to hold him. This simply made me feel comfortable that he will not just run whenever we are not watching him.

It's a busy day today, Gareth went to school then to Therapy center with my husband. After we do some errands, I sit next to Gareth with his little sister. The little one wanted to play with his Kuya but Gareth simply ignored her. It just simply made me sad because I want to see them both playing but since Gareth sometimes has his own world that is impossible to do.

He is so noisy today and stopped everyone in the house if we were singing Bruno Mars songs. He wanted us to know that it is only him who know the songs. So we let him be. He is singing until he got tired and feel sleepy.

Then the torture begins...

He was throwing books and toys to get my attention. I looked at him and asked what he wanted. He continued crying and screaming. I didn't gave in. I let him cry and still keep on asking what he wants. It took us around 15 minutes before he finally said "De De" he simply means milk.

I smile and celebrate his effort. Hubby handed him the milk and then Gareth sleeps.

Goodnight everyone!

Gareth's favorite thing to do is just to stay near to me. Everytime I lock our room he don't feel comfortable but sometimes I need to do it because I am working and I can't focus if he is also inside the room. Sometimes he is so active and end up jumping from my office chair to our nearby bed. It is so distracting for a mom like me who is working at home.

But today is quite different. When I woke up around 1pm, Gareth holds my hand and led me inside our room. For the rest of the day he is inside the room and just go out if he needs to eat. He is so silent the whole day. I wonder what happened to him but today he is not talking. He is just listening to music and even covered my mouth if I sing.

There are moments that I can't stop him being so loud but sometimes he wants peace. This is the moment when his mind is working so hard to memorize the songs he is listening then one day he will just surprise us.

I am taking this opportunity also to read books and enjoy the calmness in our room. No tantrums! Just hugs and kisses from Gareth.

While I am writing this post, he is seating behind me and touching my hair. :)

Oh God.. I love my life!

Tantrums

Just like any other kids with autism Gareth has tantrums too and sometimes very hard to deal. Gareth is at the living room watching Disney Junior and all of a sudden he shouted very loud that I can't ignore. His tantrums somehow affects his 11 months old sister, Pillow. Pillow is also crying because she saw his brother crying and this made me go crazy coz' I don't know how to manage those cryings. So I looked Gareth and listened to him. He is talking but believe me it is so hard to understand but I show to him that I understood everything.

So I found out that my sister in the other room is playing Gareth's favorite song and that made him so mad. Gareth hates watching his favorite TV shows while in the other room he's favorite song is playing. He really don't know how to manage it so he just screamed and cried!

As a mom, I don't know why I understand him. This shows our connection and it somehow made me feel better.

How I wish he can start talking so that he can express his emotions easily...

Gareth's Version of The Lazy Song :)

Gareth loves Bruno Mars songs and Lazy Song is one of his favorites.

I Believe

I know mom's like me will definitely understand what I'm going through. I will never stop believing that someday in God's time Gareth will grow like a normal kid.

Sometimes, I want to give up but I know there is no way for us to go but to find ways on how to make all this things easier for Gareth. I really wanted to help him and I know that he can't rely to anyone else but us as his family.

Today, I decided to call the DAN Doctor, well, as far as I know based on my research that there is only one DAN Doctor in the Philippines so far and this is really frustrating since the number of autistic kids are keep on growing. I set an appointment to meet a DAN Doctor for the first time on August 1 and hopefully we will start Gareth's treatment ASAP.

I read a lot of books about Autism and those are really helpful. I found out that early intervention is very important as well as the diet. We tried GFCF diet before but got frustrated because Gareth turned very weak and as a mother it really breaks my heart.

For the past 3 months we focused on his therapy. He has a nursery class everyday from 8am to 10am then headed to his Occupational Therapy and SPED Therapy from 1pm- 2pm. He is attending therapy 4 times a week for 730php/hour. Having an autistic kid is not easy. We need to deal with his behavior, our frustrations and of course our financial capability.

I lost count on how much we spent so far for his treatment. I hate computing it or taking notes of it. I don't want to think if we spent too much because all I really want is to give him the best. I believe that giving everything to him now while he is still young is very important for his recovery and I have faith that he will be normal anytime soon. And computing what we spent is not my priority.

Anyway, I read this book Cutting-Edge Therapies for Autism and it helps me understand more about his case. It has a different guide for different therapies that your kid might be needing.

Feed Me!

I love reading and since I found out about Gareth's case I am so hungry of information. I bought the kindle version of Louder than Words by Jenny McCarthy at Amazon and I learn a lot from her.

I think we should continue the GFCF diet that Gareth started months ago but I stopped because he lost a lot of weight and he becomes very sickly.

I think we should start seeking DAN Doctors ASAP too.

Everytime I read something new that I thought will benefit my son's condition I immediately research more about it and hoping that it will be the best for him.

Rants

As a mom, I find it hard to deal the situation of my son.

The depressions is with me since I found out Gareth's case. There are moments that I don't know how to deal my depressions anymore specially if Gareth is not showing any progress.

I found myself away from anyone too. I locked myself inside the room and just do my work but of course my mind is fleeting and wondering if he will be normal like any kids in the neighborhood.

I cried bucket already and I know that I have more tears coming but it will not stop me of believing that someday he will be with us like what I dream him to be.

It's sad but I have to deal with this one day at a time.

How about you?

For almost every week Gareth is having asthma attack and it's really bothering me. Maybe of his daily busy schedules and he's body is still adjusting that is why he is sickly all the time.

If he is not feeling well, I make it a point to cancel his whole day activity. At dawn, I am sending messages to the school, school service driver and his Teachers from Shine Intervention.

I make it a point also that to give extra care for his health. He is taking Vitamin C everyday and see to it that he has enough sleep. He is a very active lately but still manageable. He loves playing his new cars and singing Bruno Mars songs.

We also bought a nebulizer for his asthma and so far it really helps. So glad that we have it coz' during my time, my parents cannot afford it.

Gareth is not yet talking but so far he is trying to communicate to us through actions. He is not as hyper as before too. He is now easy to manage and seems aware of us already.

I hope and pray that eventually he can start talking to us.