Tuesday, February 22, 2005

To Others on This Road ...

I was surprised and humbled to learn that this site was listed on the page of autism resources on www.msnbc.com. I have been receiving many heart-wrenching letters from parents around the country who, like Matt and me, are trying to wade through the confusion to find the road towards recovery for their own ASD kids. I can relate in so many ways to these letters and thank you for each of them.

If there is one thing that I can say to parents who are either beginning their own journeys, or are somewhere along the way, I want to say to never forget that your ASD child (or children) has an incredible, special purpose in this life that is no less important than that of a "neurotypical" child.

Life is so hard and confusing sometimes, and it's hard to understand why things happen. But one thing I do know, is that God has placed Alec here for a reason, and that He has a very special plan and intent for his life.

It's impossible to see things from God's perspective. It's easy to get angry and I certainly have been! I have sat on the floor in tears and asked "why?" on numerous occasions. But I am learning that this is about more than me. I know that these kids have a great purpose and gift to give this world, whether they have made it far along the road to recovery, or just as they are today, right now. That they are touching people around them in many ways.

When I am able to step back from the daily frustrations (sometimes it's hard!) and from my futile attempts to tack my own dreams onto Alec of how I want him to be, I can see the beauty in him just as he is. I can feel the hope that it's going to be okay. I can know that this boy is fearfully and wonderfully made, and that his life is a precious gift.

I am learning to celebrate his daily victories (and each and every day there are victories!) with tremendous joy. Each step along the road is an adventure, a challenge, and what a blessing it is to get to see that boy's face light up after he succeeds! The joy I feel is so much more than I could have ever asked for. It's enough fuel to help me carry on. The vision of those times and Alec's smiles are enough to carry me through the bad days. And we are making such progress!

It's a lesson on love, it's a lesson on patience, and such an opportunity to pour your broken heart out to God and watch Him pick up the pieces and put them together in amazing ways. If life were not hard, would the journey be so special? How blessed I am to be given the opportunity to love this little guy. To have a chance to help someone else be all that God intended them to me, to be used in that way. Somehow, that little guy has changed my own life in incredible ways and is making my life richer, and showing me what this life is really about.

Thanks, Alec, and thanks to God. When I am done and this wild journey is over, to You be the glory.



posted by K. Langston @ 10:25:00 AM   10 comments

10 Comments:

Thank you so much for sharing your life and story with Alec. I, too, have a similar story with my Matthew. He is now 4 and I have recently discovered that our EI pre-K program is going to be cut and also that my son is losing health insurance. I recently aquired an excellent OT, and now I will have to lose him if I can't find a way to make it work. Have you found your attempts to move on the behalf of the children of your area have helped bring about change? If so, do you have any advice for where I can start? I do know that with God's help I can make a difference.
May the Lord continue to bless you!
Alexandra

By Anonymous Anonymous, at 2/22/2005 10:35:00 PM  

My heart breaks for you and Alec. I can't imagine the fortitude it must take to deal with this. Kelly, I too, believe that the Lord is our strength and our fortress. And He is a Good God - All the time. Many, many times I have asked Him to somehow let me know He's hearing my prayers; and I don't know how it happens, either thru a song, a friend or even a stranger, but the word does come that He is with me. And so He is with you and your loved ones. May you have continued strength and resolve to enable you to continue to do your very best for Alec. He is special, and yes, the Lord has a special plan for him. My heartfelt prayers are with you and I'm going to request that your family be put on the prayer list of various churches and organizations in the Hudson Valley, NY area. Many blessing to you.

By Anonymous Anonymous, at 2/23/2005 02:44:00 PM  

Thank you so much. I do have some bad days, but actually, there is a lot of joy in my life. In comments like these, I do hear God's voice of reassurance. Thanks, again.

By Blogger K. Langston, at 2/23/2005 03:57:00 PM  

My son, also Alec was diagnosed within weeks of his 2nd birthday. It is a lonely, devastating place at times. I worry about the future for him, my heart is broken. I do knoe that my husband and I are doing the best we can. Thank you God for Early Intervention, but none of it is covered, and we have one of the better PPO's. No company will pay for the experimental avenues such as chelation. It was tested, and Alec carries abnormally high levels of lead, aluminum, and arsenic. This is medically necessary and very, very costly. So, we are draining ourselves financially with all of the OT, SP, PRT, and Floortime. All of this, yet he speaks only a few words, only when he chooses. My best advice to anyone newly diagnoses would be to get into a school that will allow their child to be included with "typical"kids. We paid $1800 a month for it at Emory University, we are broke but Alec learned to sit and color like the rest of the class. Excuse me, not just color, Alec became a participating joy in that class. Now he is four years old, and moving on to kindergarten. He is my silent little wonder, who is on the verge of language, I can feel it. I can feel how badly he wants to communicate, but can't. I feel his torment and uncertainty of his daily world. I know that there is a reason we have Alec. And as cliched as this may be: God will only give you what he knows you handle. Good luck to your family

By Anonymous Anonymous, at 2/24/2005 10:32:00 PM  

To Jane in Atlanta and Kelly: During this morning's segment on the Today show, I was led to believe that every child has the right to the appropriate education to suit his/her needs. This is supposed to be a Federal Law. Why aren't the school's complying? Where is all that Lottery money going? Why isn't there money in the koffers to provide all our children with the specialized help they need? Where are our priorities? Our schools need their share of the Lottery bonanza in order for them to incorporate programs that will meet the special needs of children in our country. I apologize; but I just had to "sound off". I wish the "powers that be" would reply to this.

By Anonymous Anonymous, at 2/25/2005 05:44:00 PM  

To Jane in Atlanta and Kelly: During this morning's segment on the Today show, I was led to believe that every child has the right to the appropriate education to suit his/her needs. This is supposed to be a Federal Law. Why aren't the school's complying? Where is all that Lottery money going? Why isn't there money in the koffers to provide all our children with the specialized help they need? Where are our priorities? Our schools need their share of the Lottery bonanza in order for them to incorporate programs that will meet the special needs of children in our country. I apologize; but I just had to "sound off". I wish the "powers that be" would reply to this.

By Anonymous Anonymous, at 2/25/2005 05:46:00 PM  

God bless all of the parents of children with autism. I teach children with autism in the public schools. I was recently blessed with a student, also named Alec, who is 9 years old. He is beginning to use one word utterances and is very definitely pushing us to help him learn. We, too, celebrate the small steps along with his parents and have quickly fallen in love with his sense of humor and infectious smile. Unfortunately, it's difficult to give him the kind of education I'd like to because I have too many children, not enough staff to help and not enough money - but we do the best we can with what we have. I just hope that you can find teachers for your students who love them as much as I love my students and schools where the "typical" students are as caring as they are at my school.

By Anonymous Anonymous, at 2/25/2005 11:05:00 PM  

My name is Leira Pagaspas and Im from the Philippines
I need your help I have a son who was diagnosed with Autism.

I want to bring him there to your country but I dont have the finances.
to do so right now I was hoping to ask for your help so that
I could bring him there for programs.

If you cant help me can you refer me to someone who can help me
to bring him there to help him.Im willing to do anything and
try anything and beg if I have to just as long as I know that my son
will have a fighting chance. Because here in the Philippines
if you dont have the money you cant do anything.
According to a friend in the California they have a yearly budget
of US$ 60,000 per child but here not even a $1 is allotted for those
that are Autistic. Im doing his therapy on my own but he will have
the best intervention when he can go there in your country.

I hope you can help me.

Leira Pagaspas
632-8446646
632-8124879
7364 J. Victor St.
Makati City Philippines

By Blogger Lei, at 2/27/2005 03:44:00 AM  

My name is Leira Pagaspas and Im from the Philippines
I need your help I have a son who was diagnosed with Autism.

I want to bring him there to your country but I dont have the finances.
to do so right now I was hoping to ask for your help so that
I could bring him there for programs.

If you cant help me can you refer me to someone who can help me
to bring him there to help him.Im willing to do anything and
try anything and beg if I have to just as long as I know that my son
will have a fighting chance. Because here in the Philippines
if you dont have the money you cant do anything.
According to a friend in the California they have a yearly budget
of US$ 60,000 per child but here not even a $1 is allotted for those
that are Autistic. Im doing his therapy on my own but he will have
the best intervention when he can go there in your country.

I hope you can help me.

Leira Pagaspas
632-8446646
632-8124879
7364 J. Victor St.
Makati City Philippines

mushings.blogspot.com

By Blogger Lei, at 2/27/2005 03:47:00 AM  

I was given advice today that I need to find an Advocate for my son in the education system. He is 4 and due to his birthday he will be in pre-K an extra year. Like I wrote earlier, the entire pre-K system is being cut in Fl, even the early intervention. This means no intergration for a year and countless children as well as my own will miss out. Any one of you reading this from FL, be advised, Jeb Bush has CUT universal pre-K and the long standing program of Early Intervention Pre-K. Call your congressmen and senators!

By Anonymous Anonymous, at 2/28/2005 08:08:00 PM  

Post a Comment

<< Home