May 11, 2005

Letting Go Of Chandler

From the day our children are born, we have to begin letting go of them.

Our instinct as parents is to hold on tight and protect them from the harsh world and tell them where to go and what choices to make because we know better than they do. But if we are to serve them we have to let go of them just a little bit at a time as they begin to master their own lives, occasionally stepping back in when they are having trouble navigating (done with most frequency between the ages of 14 and 16).

My sons are 3 and 4 1/2 and at this stage of parenting I should still be able to, as my friends can, languish in that "My Boy's Gonna Be The President" dream where the possibilities of what they will become are wide open. The natural progression of parenting seems to be that as your child grows, and as the two of you get to know the person that they are (and are becoming), that field possibilities narrows. It happens gradually as you as a parent mature gradually, (hopefully) becoming more trusting of your child's decisions and less needy of having your child be The President. Then, eventually, your child is 16 and you don't so much need him to be The President as much as you need him to remember to clean his room and bring home the car in one piece.

When you find out that your son has Autism, you have to do 20 or so years of maturing in one day. You have to let go of all the expectations that you have for him, and for what you thought the rest of your life would be like. There is no 'growing out of' the adolescent fantasies that you have carried around for years, the rose colored glasses are just ripped right off, and it is painful.

It is painful, but not necessarily a bad thing.

Learning to give up some of the things that you have always wanted and face reality can be a gift. It has been a year since we found out about Chandler's Autism, and I am at the point of having gone down the path just far enough to look back and see how far I have come. Not how far Chandler has come in his "recovery", but how far I have come as a mom and a person and a grown-up.

I was fortunate to grow up in a church that had a lot of good teaching and preparing for life stuff. One of the great perspectives I learned on parenting when I was still a teenager was the idea that our children are not really ours. They are a gift from God. That they are his and he has entrusted us with their care. The idea that he has trusted these precious little ones is both a huge responsibility and a huge relief for me, because it reframes parenting in a really balanced way.

It describes a relationship to them in which I am responsible for their upbringing, but God is responsible for their life. That I am to love them and mold their character, but God is responsible for their destiny. I am merely preparing them for the journey that they will walk with God, and He will be there with them on that journey when I fail them, or when I am long gone.

For me that is freeing because it relieves me of the panic that presses on me when I begin to feel that I am responsible for the men these boys will become and if I screw up then they are doomed. (Any one else feel like that sometimes or is it just me?)

While I thought that I was pretty good compared to most mom's at "holding my children with an open hand", Chandler's diagnosis exposed my still much too fantasy based grip on My Children. After all, if I truly believed that my children were are gift from God for me to raise to the best of my ability and then offer back to him, then why would it matter quite so much to me that my boy is so different from all the other little boys. Certainly I would worry for him, but even then, if I trust that God made Chandler just as he wanted him to be, and had charted out his own distinct journey, should I not be able to trust Him that He will take care of this little life that He loves even more than I do?

Hudson Taylor wrote:

...the rest which full identification with Christ brings. I am no longer anxious about anything, as I realize this; for He, I know, is able to carry out His will, and His will is mine. It makes no matter where He places me, or how. That is rather for Him to consider than for me; for in the easiest position He must give me His grace, and in the most difficult, His grace is sufficient.

It matters little to my servant whether I send him to buy a few cash worth of things, or the most expensive articles. In either case he looks to me for the money and brings me his purchases. So, if God should place me in serious perplexity, must He not me much guidance; in positions of great difficulty, much grace; in circumstances of great pressure and trial, much strength? No fear that His resources will prove unequal to the emergency! And His resources are mine, for He is mine, and is with me and dwells in me.

I am a Christian. Years ago I stepped up to God and, in gratitude for his love and sacrifice for me, handed my life back to him. As Isaiah did after meeting God, I said, "Here am I. Send me." If I really meant it, then it should matter little where he sends me, or what hardships I face. I volunteered for service, and was given a very important assignment, to serve my wonderful family and my precious boys.

I have a very wise friend named Judy Nelson. When I was in college, and writhing in pain over men and stricken with panic and fear of the future, Judy used to say, "Ginger, it all comes down to whether or not you really believe that God is committed to your best interest". Her challenge rings in my head a lot these days.

If I really believe that he is committed to my best interest, and that he really loves my children more than I ever could, then despite the very natural instinct that I have as a mother to worry about my boys, I must know that everything is fine, because it is as God has had planned all along. And God can be trusted with my boys.

So this is where we circle back around to Letting Go of Chandler. When I look at the gorgeous faces of Webster and Chandler, the love that I feel for them is practically brain melting. The thought of them going out into the world gives me a stomach ache, but the harsh revelation of our little one's "specialness" is an early reminder that our job is to get them ready to do just that, be able to go out into the world and set off on a journey that we can't really go with them on. ("Ships are safe in the harbor, but that is not what ships are for") Webster is benefiting in that I spend much more time thinking much farther ahead for him than I would have, had we still been allowed to loiter in "President Taylor" land.

So I am trying to learn to 'let go' of Chandler even as my love for him grows. I am trying to learn to serve him rather than serving my own ego's idea of what my son should be. The better I get at it, the more I see the poetry that Chandler is.


merry said...

I stumbled onto this site this week and have been touched and informed by your posts. I've smiled and chuckled as I remembered things that my 11-year old autistic brother has done as I read of Chandler's antics.

This post is wonderfully written. It echoes my prayer for when I become a mother some day.

Brett said...

As the parent of a soon to be 14 year old autistic boy, I know all too well what you are talking about and going through. I've been thinking myself about the challenges of "letting go" as we start to prepare Zeke (and us!) for adulthood.

Thanks for the wonderful post.

Anonymous said...

I am soooo proud of my daughter and her ability to love her sons and so beautifully express herself. Keep raising my grandsons to be mighty men of God. :)

Love, Dad

Anonymous said...

Ginger, your mom sent me to your blog today. I'm so touched by what you have written. You should think about getting it published somewhere in print -- it has much wisdom that should be shared more widely.

I've told your mom that I believe that each soul chooses the family into which it is born (yes, God sends them to us, but they choose where they wish to be sent) and that Chan chose wisely. I also believe that every hardship and crisis is here only to serve as a lesson for us. Every time I'm tempted to question "Why me?" or "Why this?" or "Why now?" I find the answer -- "Because there isn't any other way for you to learn the lesson." It took me 60+ years to figure that one out -- you got it so much earlier in your life! Must be part of that choosing the right family to be born into thing...

Anonymous said...

I enjoyed your 'letting go' column, but I enjoyed so much more reading the posts that you have received. I love that people are so in tuned to others and offer help, across the wires. It's so amazing!
I too believe that my Ben chose his destiny, Way before he came to me. A wise woman told me once that in his past life he was a WARRIOR with a big mouth, and he failed at his Now he has to do them all over, but ask for help EVERY STEP of the WAY. That'll teach you to have big britches!

Many days, I don't feel up to the challenge, and other days, I feel sorry for my friends who don't get to love him like I do. He's amazing and certainly came to teach me something BIG. I'm sure its patience, because I never quite had that! And now I have to WAIT for every milestone. Its worth it. I wish it were different some days, and others Im just happy he chose me.

My boy is 8 years old now, and didn't say a real word until he was 5. I knew at 9 mos. he had issues and on more than 20 occassions some Dr. told me he had a life threatening disease. So. Im happy with this one.

I know one thing for sure, I couldn't live a day without him.

Im glad I was able to share this somewhere today. Its my first time! Im not sure how I ended up in your web but I did.

Must be the bigger source!


Anonymous said...

I ran into this site last night and I feel touched by your story. I have a 3 1/2 year old autistic boy, who is soon starting special school in August 8. I can't wait to see the results. What my husband and I bought was PCA RX, in which we saw excellent results. He gave us more eye contact, played more with toys and started repeating more words. He still needs a lot of work. I believe the Lord has led us to the right thing to do for him. We love him so much and we pray for him everyday. I believe the Lord is with him during this journey.

Anonymous said...

Hello, I loved your article about chandler. I used to work with young children with autism. They are quite amazing! All developing at different speeds. I used to sing songs with Crystal, one of the children I worked with. She'd respond sometimes with singing the right words, such as ABC's, I loved my experience with the children, with whom I will never forget.

The other me said...

I must admit that for one day I seemed to let go of the though I see even greater things because my Isaac's brain works in such an incredible way that he may stand even more of a chance to be something incredible! I hate the thought that anyone will try and make him 'the same' as all the the other kids, how dull would this world be if we were all the same? I know, absolutely and totally 100% sure that these children are not accidents, they are superb and it would do us all a huge favour if we could think their way at times. I suspect they know what is actually important and don't care much for the rest!

Anonymous said...

The preponderance of evidence shows a causal connection between heavy metal toxicity, especially Mercury and Autism. Autism has risen in direct correlation to our children's exposure to Mercury and other neurotoxins. The research and evidence is out there and it is only a matter of time before this is acknowledged by the medical community as undisputed fact. The developing brain is most vulnerable in early childhood to Mercury exposure, either through parent's amalgam Mercury fillings, or vaccinations, both of which represent exposure's to the child hundreds of time the EPA acceptable level. It's logical that no level of neurotoxin in the vast majority of cases could be GOOD for the developing brain.

The only solution to mitigate this disruption of normal brain and nervous system functioning and developing is to rid the body of the cause of the problem, primarily due to effects of Mercury. This can be done through either chelation or clathration treatments that bound the loosely attached Mercury to sulfur groups on intracellular proteins. Human evolution has provided us with a mechanism to cope with heavy metal toxicity and this is mainly through binding with the body protein glutathione; unfortunately the fact that exposure to Mercury and other heavy metals have increased a hundred fold over the last hundred years has exceeded our capacity to evolve mechanisms to excrete the neurotoxins.
If you buy the mainstream idea that Autism is some MYSTERY illness, no doubt perpetuated by the ADA and pharmaceutical companies whose liability most probably reaches into the hundreds of billions of dollars, then by all means leave the accumulated potent neurotoxins in your childs body to their continued detriment.

In considering removal of the heavy metal burden from the body, do a lot of research and be very selective and careful with the advice and treatments you choose to follow. DMPS has been known to cause severe disabilities in patients for which the level of Mercury release exceeded their bodies capacity to excrete. Make no mistake there are LARGE stores of Mercury in the body, for with the average person with Autism or amalgam fillings would result in a fatal exposure if it were to be released at any one time. These Mercury stores have accumulated over time and the only safe way to release them as of now, is slowly and over time, through a vehicle that can effectively bind the Mercury so that it is not reabsorbed while the body is excreting it.

How did I come across this knowledge? Through hours and hours of careful research, analysis, and concern for my own health. The 8 years I spent in higher education has helped as well. I encourage all of you to do more research on the subject, and rather than resigning yourselves to a fatalist position, learn the true causes of the disorder, dangers of Mercury in the body, and myriad maladies it has caused and siege it has lain on millions of unsuspecting lives. Knowledge is power, and through knowledge and awareness we can hope to put an end to the truly needless and pointless suffering caused by industries putting their bottom line over that of people's well being. We as a people can see now why careful government regulation and continued scientific anlaysis and research needs to be done to protect our health. Most importantly is that people need to be aware that we can't always follow blindly something that is the established norm, we are all responsible for our health and need to be proactive both at the societal and individual level to ensure our continued prosperity and well being.

Anonymous said...

Through the removal of the neurotoxin from malaised bodies, the body may not return to a fully 100% nominal state; however you will have given your body its best chance to develop normally from that point out and to repair the damage that has been done to the furthest extent genetics will allow. I worked with an autistic child for quite a while, and while we may huge leaps through ABA and discrete trial therapy along with a close personal affinity the child developed for me, It makes me so angry to hear from doctors the phrase "well we don't know what causes Autism"; We do know all the evidence is there, it's just the influence of the powerful industries that have vested interests and liabities running into hundreds of billions if not trillions of dollars in liability that have obfuscated and delayed progress in solving this crisis. Progress is being made however, many European nations now have banned the use of Amalgam fillings, and the FDA has disallowed the use of Thimersol(Mercury) in childhood vaccinations as of 2002. Good luck and best wishes to all afflicted by this needless tragedy.

Anonymous said...

I am the adoptive mother of 1 and possibly 2 spectrum kids. James was undiogonosed for several years. Today as I sat in the therapist office [ a part of the team for james and his brothers] wondering how are we going to get through this, and knowing I needed an answer from God. I prayed for one. We are older parents and our children are grown we are Christians. I thought that I was trusting in God the way that I should be. However I stumbled on to your site and I found my answer to prayer I have been lifted from my burden of questions of how are we going to do it. my spirit is renewed and I know that GOd is with me again., You see my health has been not good and I have worried over these precious souls but your letter has given me a renewal from the source of all good and great gifts. Diane Carroll, Brattleboro, Vermont

Anonymous said...

Hi Everyone:

What wonderful and courageous parents you are. I understand that the Glutathione levels are lower in Autistic Children. I know of a product which helps the body produce glutathione. If I can be of any help please contact me at

Anonymous said...

Love to all of you who are reading this site, especially those whose lives have been impacted by autism.

As a parent who thus far has NOT had to deal with this, I feel strongly that the parents of autistic children should NOT have to face this alone. What are the best ways we can help?

Anonymous said...

I am a good Christian too, but I don't want to leave my son's fate to god's hands. I would rather do all I can now to help him. If I am wrong, I am sure god won't punish me in the afterlife.

Kari said...

Wow, what a powerful post...especially to a newbie on this road. I just started a blog toight about my journey. My son just got the diagnosis last week. This post even prompted me to want to change my whole blog. I realize I have a LONG way to go. Thanks for the nudge:)

Anonymous said...

Hi Im Millie from Australia. Im a mum to a 18 year old young man with autism. Just like all the newer mums and dads who are dealing with a recent diagnosis of autism, 15 years ago I went through dealing with the grief of losing the child I thought I had. My story is long but I can say that it is not doom ang gloom as I was told it would be. My son' autism is severe. He doesnt have any speech and cant read and write. But he gives me much joy. Although Robert cant do some things He still has an intelligence that cant break through his disability. You can see it in him. He is very capable at his daily living skills and that is a blessing because a few years ago he was very passive and had to be prompted a lot. The worst time we have had is when robbie became an angry young man from about 15 years onwards. He is starting to settle down now. I pray alot to our Lord and I know that I will be with Robbie in Heaven With Jesus and he will be complete and whole. What a glorious time that will be. I would just like to say LOVE THEM and accept them. They really need that. The more you accept them the more likely they will step more in to your world. Youre child with autism has a ticket to heaven and if you truly accept Jesus as your personal lord and saviour you will see your child in heaven and youre child will be whole.

Anonymous said...

My story is much like yours and many others. My son Andrew was diagnosed when he was 2 because I knew something was wrong. I had numerous doctors tell me he was "normal" but I just knew. I grew up in MD and was pregnant w/Andrew when we moved to NJ. Andrew was "normal" up until 18 months when everything just stopped and he just went "crazy". I still have never cried, I think because I knew something was wrong I figured why waste time crying when I could focus my energy on fixing the "problem". Andrew was born in March of "03 and diagnosed in May of '05 at Kennedy Krieger in Baltimore. We had to pay for that appt. out of pocket because it was an out of network provider but I wanted Andrew to be seen by the best. For all of the parents who are put on a waiting list you can try what I did... I got on everyone's waiting list and continued to call daily asking about cancellations. I told Kennedy Krieger I needed a 4 hour window to get my kids in the car and get on the road and I'd be there. They gave me a week's notice but we were eager.

By June I had a confirmation on the diagnosis by a NJ hospital that was covered (more for my husband's sake than anything). By July we were doing Dairy free (not just casine but all dairy) and within a week Andrew was receptive to pain again. Milk proteins can act as morphine in kids that can't break it down properly therefore making Andrew almost like a superman - he never got hurt. By Aug. we began Vitamin therapy with a wonderful DAN doc. and in Dec started B-12 than in Jan began chelation.

Andrew @ diagnosis said 7 words he is now over 170 and making eye contact and smiling and laughing again. We still have a long way until we are done and hopefully we will achieve our goal. It has been a financial terror but worth every last penny!!! We are going to begin Glutathione injections in about 5 weeks and are nervous but why stop when we have seen so much progress.

I am a diabetic and my daughter is a severe asthmatic so I can't hate the drug companies for they have done some good. I am disgusted for my son and the millions suffering like him and the families suffering like ours. I guess to me Eli Lilly invented insulin and without it I would have been dead over 15 years ago (diagnosed and admitted @ Johns Hopkins:) so there would have been no Andrew to have autism for me to have worried about. I guess everything happens for a reason and I think Andrew's autism is actually making my family stronger, my husband and I are closer now, and I as an individual am much more independent.

One of the biggest things that gets me through is remembering that as bad as my situation is that it could be worse. There are children dying everyday from horrible things such as cancer and AIDS. As bad as this is my Andrew is not dying and eventhough he may not be President someday he will always be my son and his happiness now is what matters.

To all of you out there I wish you the best of luck and I love reading the comments and being able to compare my situation and treatments to others.

Anonymous said...

reading through your post and the comments left by others i was struck by how familiar some of the things said felt. quite deja vu. it was as if some of my own personal thoughts that i had never voiced to a living soul were suddenly in print before my very own eyes!

i too have always believed that as souls in waiting we choose the circumstances of our birth and the family (for better or worse...) that we are born into. i believe we are here to live & learn through our mistakes & the experiences we have along the way.

do i believe then that my son finn chose to have autism in this life?

i honestly don't know. i feel that is between himself & his creator. i only know that i accept him as he is wholeheartedly 100%. i don't seek to change him or cure him. he is not ill or in pain. he is a very unique special child who i can only endeavor to help along his journey as best i can. always aiming to ease any difficulties he may have due to his condition as in communication or interaction. but always sensitive to the fact that finn is different and i would never try to 'normalise' him.

he will always have autism and so will always have a different take on things including the world around him and the people in it. but his viewpoint is as equally valid as any other and is to be valued. so i did not take kindly to the two posts ranting about autism as an 'affliction' due to mercury toxicity.

for whatever reason or reasons finn was born with autism. it is just the way he is (though autism is not the whole of finn either. he is also a spirited 6 year old!)

many of the pathways in his brain have developed differently from ours (nt's) which gives him his differing views/perceptions etc. but thats it, thats the way it is and will always be. it is not for me even as his mum to wonder what could have been? as this is finn, this is how he was meant to be. i don't believe there is another finn trapped inside him waiting for me to free him! he is as he is.

personally i would never ask someone to pray for my son as that implies that i think there is something wrong with him. as i have said he is not in pain nor is he suffering in any way as how he is, is normal for him. i pray for those children who are suffering in the world though especially those who are being abused or who are missing. i pray for the safe return of little madeline mccann.

Unknown said...

I am just so touched by your devotion to your Son and your strength to pursue such a large parents we are all pieces of this puzzle. It is a blessing to feel so kindred to some one whom I have never met but is walking in my shoes. Jessica Glover.
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