Autism In The Headlines: part one (impact)

Last night as I was skimming news stories on the web, I came across the article about a mother who attempted to kill her autistic child and herself. Furthermore, the article stated the mom indicated her distress on her blog, prior to the suicide attempt.

Having at least two things in common with the woman, I found the blog and took a look. There are over 500 comments on the blog.  Many people took the opportunity to post opinions and comments, some of which were cruel and others just plain ignorant at best.

I don’t condone this woman’s actions by any means, but I’m confident there is a lot more to her story than the snippets distributed through the AP news services.

Autism has an ever increasing presence in the news within the last year. I feared Adam Lanza’s widespread devastation would vilify Asperger’s after the Newtown tragedy in December.  It did heighten the awareness of Asperger’s and its related disorders to many in the public who had no clue or awareness of the increasing prevalence of ASD.

Presently, a family in Michigan is going through its own devastation. Thankfully, the daughter is making miraculous progress.  My prayer is that the mother now receives the medical attention she needs.

Some commenters on her blog spouted off that the mother deserves to die. My question is was she not already  to some extent “dead?” What degree of pain, helplessness and hopelessness existed that the mother couldn’t live in the present, let alone even imagine facing the future?

Mentally fit people do not attempt to kill themselves, let alone their children. We ask how could she?  This mother must have been so terribly broken to the point she wondered, how could she not?

The last post on the blog indicates she was attempting to get her daughter the help she needed. This mother, obviously, was very much in need of help as well.

I read a few of the posts on her blog. The frustration is evident. Her road in parenting is far harder than mine. I can’t even imagine her daily routine.

I readily admit I can’t comprehend how she could have attempted such a tragedy and I’m grateful that I can’t!

Yet, I have no doubt that there are people reading her story with empathy for her and an understanding of how she felt.

Autism and its related disorders are affecting more and more people; there is no doubt about that. Just how much so is a question waiting for a definitive answer.

Some parents of ASD children are at a loss and shut down, often oblivious or indifferent to the consequences of leaving the child without resources that not only benefit the child but also minimize certain behaviors, especially those behaviors that can potentially harm others.

Some parents shut down because they can’t face the diagnosis, and especially so when they are forced to do so alone.  Many kids are cast aside (and I’m not just talking about ASD kids here) left to the tether of video games or solitary behaviors that isolate them from people who don’t want to be bothered and that can sometimes incubate destructive behaviors.

Some parents shut down in denial, not wanting to accept a less than perfect child as their own, let alone admit a problem to anyone else. They may gloss over issues or ignore the “quirks” in their child. Yet, failure to recognize or address the situation certainly minimizes the probability for proper medical and cognitive care unless there is outside intervention.

In contrast, other parents and guardians are so overwhelmed with trying to provide everything possible for their kids, they break down. Their kids may be violent and require extensive services the parents don’t have the resources to offer. These parents are often drained from their daily duties there is little energy to fight for the scarcity of resources available from social services. These same people are often struggling with several “crisis” situations all at once, trying to provide for other children and God only knows what else.

I noticed on the mother’s blog how many commenters were confident they had all the answers. I wondered how these people could be so knowledgeable when there are seemingly many unspoken questions.

It appears this mother spent the last fourteen years caring diligently for her child. In addition, there are other family members in this picture to consider. Only that family will ever know the toll ASD took on them and is still taking…

Many commenters blasted how they would never do such a horrendous thing. I certainly hope they would not!

However, I ask would these same accusers offer encouragement, kindness or even prayer to a parent going through a difficult situation? A situation that can be brutal, never-ending, and overwhelming for everyone involved.

I am certainly not casting stones or providing justification.

I am asking painful questions and suggesting conversations that may possibly prevent this type of tragedy from occurring again.

I work in the health care sector and have the opportunity to see many parents of special needs children going along, taking it day by day with God every step of the way. They will eagerly and enthusiastically tell you He is the only way they make it.

I have also witnessed abusive parents who are aggravated and bitter about the condition of a child, doing little more than necessary to minimize their own inconvenience.

People come to me for advice, that’s part of my job. I try and take the opportunity to encourage those parents who are at a loss or distraught and point them in the direction for the best resources. I also emphasize that parents take care of themselves so they can properly take care of the child. I am willing to share my own experiences. Sometimes it is enough for a parent to know they are not alone on their journey and someone else really does understand.

I remember many years ago feeling alone and helpless. Autism was not a “hot topic” as it is these days. But I have one friend whose grown child isn’t on the spectrum but suffered a great physical disability. Her testimony of how she endures a far greater “hardship” than mine and how she continues to make it through with God, her great attitude encouraged me when I had no one to talk to or lean on.

She didn’t have to say a thing. We often talked about everything else besides our kids. But I looked toward her example. If she could do it and make a very hard role look easy, I could at least try; give it my best, and not give up hope.

Now, I want to be that encouragement for someone else.

It is so easy to say what you wouldn’t do, but what would you do?

Would you offer a hand, your heart, a listening ear or even your prayers?

A blogger I follow shared a great story about how one family paid for the meal of another at a restaurant. There was a family with a special needs child and apparently they were not having a good dinner. The frustration was very evident from the parents.

I have seen parents out to dinner with their kids and trying to make the best of it as other patrons give them the evil eye. Sure people want to get out and have a nice dinner, but guess what, these parents do too!

I’m at a point in my life where I can tune out a screaming child. It’s not going to ruin my meal. Some parents don’t get an “outing” on a regular basis. Often, the needs of a child prevent that from occurring. Sometimes dinner goes well. Sometimes not.

Anyway, the gist of the post is that the waitress brought the paid check to the family struggling through dinner and the benefactor had written on it something to the effect of saying that it takes special people to care for special needs children.

I’m sure that generous gesture on one person’s part was the ray of light, hope or support the family needed right at that time. We have no idea of the struggles others are going through. How often do we gloss over opportunities to do good to others because we are so caught up in our own little world?

Many people glibly say they would take a bullet and die for their child and mean it. But would these same people be willing to take a proverbial bullet daily, one that did not offer a quick and sudden death, but instead rendered such emotional and mental agony than ever imaginable that physical demise looks like a blessing in comparison?

I challenge those commentors to instead of easily saying what they would have done to instead, get out of their own piece of paradise and actually do something that would encourage, uplift, offer hope or inspire someone else. A kind gesture is often all it takes to reaffirm to someone that they are not alone. We can become vehicles that provide God’s blessings when we open ourselves up to give instead of condemn.

My experience with autism has allowed me discernment to recognize some needs of parents of kids with disabilities. I offer encouragement when I can. A lot of prayers have gone up oblivious to the people I’ve prayed for. I don’t always know what God is doing in my life but I have learned to be more aware of what is going on around me and to look outward instead of always looking in my own tiny world.

I was told when pregnant with my oldest son there was a chance he would have Downs Syndrome. I got a very callous call at work with that information and quickly fell apart. Well, the tests were wrong, that bullet was dodged and my oldest is quite a brilliant young man, very well acclimated to his strenuous academic workload, his brainiac friends and the occasional video game.

Having dodged a bullet that with the first child, it really didn’t dawn on me anything would ever be “wrong” with the second. I was going through a strenuous time in my life moving cross country, twice, with one baby and pregnant with another. I prayed for a happy and healthy second child. I had my answered prayer and then something changed…

Lan is still happy, almost deliriously so at times. I have to rein him in so he can “focus” on the mundane tasks in life such as chores, school work, responsibilities and maturity. All of which are highly overrated in his eyes. But he is happy and thankfully a very peaceful child.

Maybe his ASD diagnosis wasn’t about him, but rather me. I have learned from it, grown from it and grown with it. I don’t have all the answers and I’m no longer looking for them. I lost interest in asking God “why” many years ago.

I will say that I am grateful for what God has given me, even with ASD and all its implications never that far off. God is allowing me to manage. Some days better than others but He is with me, I am sure. I pray that He is with all the others, like me, who need Him.

Maybe that’s what this is all about for me. My experiences have taught me to not just pray for my needs, but recognize the needs of complete strangers and intercede on their behalf.

Who knows? I am just trying to do the best I can with what I have like most people. I am turning not to my own abilities but leaning on His stability, a lesson I’m not honestly sure I would have learned at this point in my life if not for my youngest son.

Autism is here to stay for the moment. I am hopeful and prayerful for new therapies, remedies and medical innovation. I’ve seen a lot of things in my twenty-one years in healthcare. I know with God anything is possible. My prayers for a healthy child were not in vain, maybe just not quite answered… yet. Then again, “healthy” is increasingly becoming a relative term.

Autism is in the headlines more and more but I pray for more positive stories and more positive outcomes. Many stories focus on the child. There is an ever increasing need to recognize and inform others of the toil these disorders take on the parents, family members and the community as well.

I can’t provide a cure but can provide a smile. I’m not a psychiatrist. But I can pray. Prayer may not sound like much to some people, but I’ve witnessed God answer some “out there” prayers and amazingly so at that!

Instead, of asking “what can one person do,”   I challenge those who criticize and judge from afar to actually do something positive and find out!

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Dont Lose Yourself!

I remember a conversation with my boys not that long ago where I was trying to convince them that I really used to be a fun and interesting person, recalling a long gone pre-kids era. I didn’t see what was so incredibly hard to believe. Instead, both boys looked at me dumbfounded as if horns had grown out of my head.

It took a minute or two bu then it dawned on me. My kids couldn’t believe it because they had rarely seen it! 

My kids are accustomed to seeing me perform my usual maternal responsibilities of keeping them on track and as organized as possible. Or they easily view me from the perspective of my “day job” as mom’s alter ego away from home. These things are easy for them. Fun? Interesting? Not exactly two adjectives readily identified with mom.

Before I was immersed in motherhood, I had a social life, hung out with friends, went to concerts, read lots of books and did fun things that normal people do. Even after my kids were born, I managed to maintain a garden, collect comic books and still pursue my many varied interests.

But somewhere along the line slowly and insidiously more and more of my interests gave way and faded away as their extra-curricular activities swallowed up time. My interests deferred to theirs.

My household was running along just fine. My kids were okay. I could check my husband off my list as present and accounted for. Work? Check. Everything was in reasonable order…but I wasn’t myself. In fact, I no longer recognized myself.

I could only remember the things that gave me joy as faint memories because I had deprived myself of them for so long. Everyone else in my household was moving along just fine, but I was lost. I lost myself somewhere along the way of trying to be everything to everyone.

I’m not quite sure what prompted my revelation but I guess another birthday may have had something to do with it. When I realized that I have probably lived half of my life already, I had a new found determination to actually enjoy my life!

I concluded I was doing myself a disservice by robbing myself of precious “me” time (locked in the bathroom away from the rest of my family would no longer count) and that I was robbing my kids as well.

If my world always revolved around theirs, I would be lying to them. The real world doesn’t operate that way and there was no valid reason to set them up for such an unrealistic expectation. I also realized that instead of smothering my personal interests I could not only enjoy them but also share them with my kids.

My kids now have a vast knowledge of the Marvel Universe. This may not be the most useful information ever, yet it is oh so entertaining as we can discuss super-heroes until infinity.

My oldest son is now a most excellent baker of cookies and cake from scratch. My youngest is a self-proclaimed pizza connoisseur, his home-made pizza is far better than any take-out.  Both kids have absorbed my love of cooking and nearly fight each other in  their attempts to conquer the kitchen.

My kids absorbed my passion for writing as well. They now write their own comic books and graphic novels creating characters and sketching them out. I am now “interesting enough” to consult about plot ideas, themes and costumes!

When we as parents allow parts ourselves to die, no matter how insignificant it seems at the time, we actually kill opportunities to share with our kids.

This decision to not just cast aside my own personal hobbies for my kid’s casual interests gave them a newfound respect for me as a person and not just their mother.

I can’t provide a balanced example for them to aspire to if I lead an unbalanced life. Lingering or latent resentment because I made a choice to diminish myself for the benefit of my kids actually benefits no one.

They don’t need a martyr. The do need a mentally and emotionally fit mother!

God created me not one-dimensional but with layers. I am daughter, wife, and mother each persona with varied facets. We are all gems that when turned toward the sun (or more accurately, the Son) reflect various degrees of light depending on how much we’ve been cut, honed or polished.

Sometimes we need a few cuts to better absorb the light. Sometimes we need to polish ourselves so that our best selves shine. Pursuing those interests that speak to us allow us opportunities to reflect God’s light on others and share His love with those we love.

It is in fact our responsibility to “use it or lose it,” in regards to those talents He has given us (Matthew 25:15-29). For what God has given us is not to be buried but multiplied instead! We multiply our talents when we share with others what we know and have. To bury our gifts is displeasing to God.

Learning that I don’t have to obliterate my own talents under the obligations of motherhood but that I can nourish them and share them with my children, provides them opportunities to learn new things, engage in new adventures and stimulate their curiosity in ways no video game or DVD ever could.

God loves me; of this I had no doubt. I had to re-learn to love me enough to nurture my talents and interests as God intended.

My kids and I now have more things to enjoy together. I have relinquished my role as just their “taxi driver” and relish my role as contributor and participant.

If you have lost a bit of yourself, I challenge you to find yourself and those things once held dear to you. Unearth those gifts, share them and allow them to make room for you!

It still takes a bit of diligence to maintain a good balance between me, them and us but it is well worth the effort.

“Amazing grace, how sweet the sound, that saved a wretch like me, I once was lost, but now am found, was blind but now I see,” 

John Newton

Mind Control

“And do not be conformed to this world, but be transformed by the renewing of your mind, that you may prove what is that good and acceptable and perfect will of God,” Romans 12:2 NKJV

As I sat during last night’s football game, I had to continually reprogram my thinking. Yesterday was the first football game of the season. Unlike last year, my youngest son Lan had no interest at all in sitting by me. About ten minutes after our arrival the first words out of his mouth were, “Can I go sit by my friends?”

His request was not unexpected. He is growing up and now in high school. However, I have to constantly battle within my mind that he is not in elementary school or middle school. I have to constantly remember that he has shown increased maturity and responsibility.

He will never learn how to correctly behave in social situations if I am constantly whispering in his ear what he should and should not do.

So, I have absolutely no idea what happened in the first half of the game.

Aside from a few glances over at my older son who was in the stands with the band, my attention was keenly focused two sections over. Lan was talking with one of his school mates and hugging and speaking with his former teachers.

I watched him walk up and down the stairs, waving hesitantly to various people he knew. He was always in eyesight. My husband sat down beside me and sighed. “He’s fine,” he moaned. Lan may have been fine. I was not.

Last night was definitely an exercise but for me more so than Lan. I had to exercise faith that he would be all right, not just last night but in these next four years of high school. I had to exercise patience because watching him socialize while not under my direct supervision was nerve-wracking. I was surprised at my level of anxiety. I was also proud at Lan’s willingness to mingle.

I’ve prayed that Lan would find good friends. He has a few but none of them go to his school. He will have to make new friends. I will have to allow him the opportunity to do so.

I know it is God’s intention to answer my prayer. I just have to get out-of-the-way and allow Him to do so.  I have to trust God for this to happen. I prayed while sitting in the stands.

High school is often a time of angst under the best of circumstances. We all want to protect our kids when it pains us to see them branch out. But there is no way any of us can learn without failure. Lan will never reach his full potential if I don’t allow him to try and fail.

I have to remember he isn’t the same child who would wander in pre-k. He isn’t the same child who was terrified of crowds. He has grown and I must too, if I’m not to lose my mind.

Sometimes we can have our minds so programmed to one thought that we are reluctant to change. Always realistic, I must look at what he can become not how I’ve viewed him in the past. I must change my thinking if I am to “hand him over,” so God can do even more.

I wrote recently about letting go. Last night showed me I’ve still got a ways to go. Letting go means relinquishing more and more of my parental control and gaining more and more control over my thoughts.

This change is uncomfortable, nauseating and even painful. But it is necessary for all of our sakes. If Lan is to grow up, I can’t hold him in.

My husband saw one of his teachers last night who said Lan was doing just great in his class. I breathed a sigh of relief. I have to change my thinking so I am not surprised by the very things I pray for!

God has gotten us thus far and I’m confident He will see us through high school and beyond. I just have to remind myself of miracles past every time I get that gnawing knot in my stomach.

Lan came back to my seat at the end of the game just as my husband instructed, even before the timer was done. He maneuvered the crowd just fine. There was no major fiasco. No catastrophe. We survived.

It is indeed an effort not to view the teenager towering over me as the little kid I’ve sheltered for so long. Lan and I have moved on to a new season in life and ready or not it is here.

For once it is not Lan who needs to be mature and adapt. This time it’s me.

One Lucky Cat

Nearly ten years ago, as I was giving the boys breakfast and frantically trying to get them ready for school, a visitor came boldly calling at our door. At first, I thought I was hearing things (my mind was really frazzled back in those days) but lo and behold there really was a cat very loudly meowing at my back door.

My first thought was I don’t have time for this nonsense. I don’t like cats. At all. However, the kids I was desperately trying to get ready for school had abandoned their oatmeal to come look at the pretty kitty.

As short fused as I was, I’m sure I was in no mood to entertain a cat let alone try to figure out where it came from.  I started shooing it away, and yelling at it to get it back down the steps and off my deck. By now both boys are looking at me like I’m Cruella DeVille and Cam very pointedly says to me “Mommy, that’s mean.”

I take a deep breath and bite my tongue. After all I am trying to teach my kids compassion and the last thing I need is for them to go marching into their Christian pre-school and telling the whole world how I was trying to kill a cat that morning (that would have been Cam’s interpertation).

So… I find a can of salmon in the pantry, put it on a paper plate and stick it outside the back door. By this time the cat is gone or at the very least, I can’t see it. Good riddance, for sure, and I’m just a bit annoyed that I just wasted a perfectly good can of salmon.

When we return home the first thing both kids do is head for the back door. No cat, but the food is gone.  Grateful, I’m thinking it has found its way home.  We did a good deed (albeit reluctantly) and that is that.

No such luck. Over the next couple of months this cat would increasingly come to my house. It didn’t just come, it lingered.

I finally relented, but only after posting signs throughout the neighborhood.

Okay, we now have an outside cat. No harm in that. The kids are happy. I’m no longer viewed as “Cruella” and it shouldn’t take that much effort on my part.

Well, a few days later I come down the stairs and my darling husband is standing in the kitchen holding the cat….and a litter box! And by the way, he doesn’t like cats either.

One week and one vet bill later, I name the cat Lucky.  For some reason I decided it would be a good name so he isn’t stigmatized by his black coloring. The other is to save him from being named after a Ninja Turtle.

By now, you’re probably thinking what does this cat have to do with God and autism?

I have learned through my journey that God answers prayers in the most unexpected ways. It is around this time that my oldest son, still in pre-school prays for his brother to talk. This prayer wasn’t anything we prompted him to do. Cam thought this up all on his own.

Lan would say a few words here and there, but we really had to pull them out of him. However, once the cat was here to stay, Lan became enamored with him and started asking things like, “where’s the cat?” “Can I feed the cat?” “Lucky where are you?” Landon even started telling people he didn’t know about his cat.

I figure this cat must have been desperate for a home because he allowed a three-year old and a four-year old to pretty much drag him around as their real life “stuffed toy.” Lucky never once scratched or bit them.  He was actually more social than the two dogs we had. He was also smarter too.

Lucky helped draw Landon out of his shell. Consequently, Lucky worked his way into my heart. As the kids lay on the floor one night watching some Christmas special, I noticed Landon’s pillow wasn’t a pillow at all.

It was the cat!

I started to fuss but then realized Lucky wasn’t trying to get away. He looked up at me with those big yellow eyes as if to say “it’s okay. I don’t mind,” and then he turned away from me and back to the kids. His kids.

He hasn’t been a perfect cat but he’s probably come close.

From Lucky, I have learned the immense value of an afternoon nap and how it’s important to get one when you can. Lucky has shown me how to be flexible, eating the dog’s food when she eats all of his. He has proven that the world won’t come to an end when you sometimes break a few rules.

The world didn’t end when I walked in to find him snoozing on my “good” sofa.

Armageddon didn’t erupt when I woke to find him asleep beside me… in my bed!

Did I mention, I don’t like cats?

I don’t know that I’ll ever consider myself a “cat lover” but I certainly love this one.

I have seen God’s answers to our prayers aren’t always what we expect them to be. Our blessings and miracles often arrive in disguise. I almost closed the door on one of mine. Don’t you make the same mistake and miss out on an answer you’ve been waiting for.

Not all angels have wings. Some have paws, of this I am sure. I look back all these years later and readily admit I didn’t do the cat a favor.

I’m the lucky one!

Kids can be…

This week as I skimmed my Facebook page, my attention fell to all the first day of school pictures posted.  Most of these were from my hometown where school starts later than here in Georgia. I quickly noticed the pictures had something in common.  All of the kids going to kindergarten or elementary school wore big smiles and their faces were aglow with anticipation.

In contrast, the kids heading off for their first day of middle school looked hesitant, wary and were marked with trepidation. I could relate to their lack of enthusiasm. I remembered exactly how they felt.

Three years ago now, I dreaded the first day of middle school for my youngest son, Lan. He was so eager to head off and join his brother in middle school. I, however, was a nervous wreck!

I didn’t share his enthusiasm of starting that next chapter of his life. Every other moment, it seemed, I found myself immersed in yet another news story depicting the callousness of kids today. Facebook nightmares. Bullying. Suicidal adolescents that fell through the cracks. My head throbbed with thoughts of everything that could go wrong. The overwhelming thought that hammered away in my mind was that kids can be so cruel.

My oldest son already attended the school and unbeknownst to me dealt with his own bullies the previous year. I just found this out months ago! This finally explained why he was hardly inclined to look after his brother. Cam was worried about himself! Sure enough, not even a week passed before a boy stepped in front of Lan and started questioning him.

A funny thing, or rather a blessed thing occurred then. One of the neighborhood kids stepped up to the perpetrator to defend Lan before the kid could get all of his words out. Kennedy’s defense of Lan set the tone that he was not to be harassed. With no prodding on my part, the other neighborhood kids also watched out for him throughout his three-year tenure in middle school.

Ramone in particular, would even let me know when major assignments such as science projects were due. Lan habitually would neglect to tell me of such pertinent information in a timely manner! In a day and age when most kids entering middle school were striving to get in the “in crowd” a good number of kids reached out to Lan and considered him their friend.

Lan’s confidence increased. He stayed after school to take part in art club and comic book club. He wanted to socialize. This was a major accomplishment!

Lan worked hard his second year of school to earn a place in the “A” band with all of his friends who were honor students. He wanted to go to Festival and compete just as they had done the year before. He set a goal, worked hard and achieved it.

I learned of many kind deeds well after the fact. The first day of middle school I fought back tears. Upon his eighth grade graduation, I let them flow.

In the last days of school, Lan’s principal saw me and asked if I would be attending the awards ceremony. I’d always done so for my oldest, a high achiever, and would do so for my youngest as well. Lan had just mentioned the day before that he did not think he would get any awards. He was rather sad about it. I told him it did not matter, not to worry and instead enjoy all the end of year activities with his friends.

Well, as my husband and I sat in the bleachers with the other parents, the principal began to explain a special plaque awarded each year. The Mandy Young Award is given annually to the eighth grader that overcomes some difficulty with a good attitude. When Lan’s name was called, he quickly made his way up front, especially so, for someone not expecting anything!

The gymnasium erupted in applause and kids stood chanting for him! Lan waved his hands to the crowd as they cheered, as if he were the president or some celebrity. It was quite the sight. I would have laughed if I hadn’t been crying.

Landon not only survived middle school, he thrived! Once again, a single thought hammered through my mind.

Kids can be so kind.

Letting go…

After dropping my youngest son off to high school this morning, I pondered, “at what point along this path did I gain peace in regards to letting go?”

I am not at all suggesting that I have given up on his development or have relegated myself to the status quo. Instead, I sit here in a rare moment of silence realizing somewhere along the way I finally let go of the frustration and worry that continually dogged me with every decision I made.

I still think about decisions I make, commitments I have and how they do revolve around the needs of my kids, yet the desperation I once felt is no longer there.

Somewhere within these last four years post Asperger’s diagnosis, I have miraculously (and it is very much a miracle) let go of the frustration and implications that haunted my every move.

Part of it, I believe, is the realization that my stressed out state was overflowing onto the other members of my family. They can’t function well if I am running around like a warden and cracking a whip like some crazed dictator. Lan has enough to deal with and doesn’t need the frustration of a “crazy mother” on top of that.

I always worried about making everything the best it could be, nagged my kids to meet set goals, badgered my husband to adhere to the list of commands I deemed crucial, all in my failed attempts to better control my situation.

Autism is such an uncontrollable condition, not always the same on any given day.  Often, you don’t know what you’re going to deal with before the day is done. A broken leg is simply a broken leg. You suffer through it, work around it and eventually it heals. Unfortunately for us, autism just isn’t that simple. Its intangible characteristics don’t have clear boundaries, often transforming, evolving and changing us as well….if we allow it.

Somewhere along the line I decided to stop allowing Lan’s diagnosis run all over me. He was doing fine. I was the one socially and mentally imprisoned. I’m not sure when it happened, but I am extremely grateful for the transformation. I finally managed to accept the peace from God that I’d been praying for. It had been there for the taking; I just wasn’t smart enough or mature enough to take it!

We will never see how much God will do until we admit to ourselves just how little we can do within our own power. I’ve witnessed miracles both great and small. Sometimes it is the smallest ones, like a good grade on a quiz or an awesome picture he draws that bring the greatest joy.

In the past, I was always looking ahead to meet some goal, get him through the school year, develop a certain skill, or make him responsible that I often lost sight of the present. Lan has a certain catch phrase, “what’s wrong with that?” which is his usual response when I scold him about doing something I think he shouldn’t be doing.

Well, the mad tyrant that possessed me for so long subsides as I decide more and more often that there is nothing actually “wrong,” with the behavior I berated. Lan’s behavior for my over-correction was never anything crucial or disrespectful. I would often chide him for things I would find silly like dancing in the middle of the floor to his own internal music or devising some crazed concoction he deemed to be lunch, usually the very sight of which made my stomach churn.

I have realized Lan is often correct and sometimes there is “nothing wrong.” He may not do things the way I would them but that’s okay too. Letting go and allowing my child to express himself (within suitable boundaries, I’m not that far removed from my old self!) allows me the freedom to stop trying to control his every move. The release of my iron grip allows me to breathe a little and actually relax.

There was one point in my life where I don’t think I relaxed for years. I was in survival mode and it is very easy to stay there if you aren’t careful.  The challenges of parenting, in addition to all the other stuff life threw my way, kept me very much on the defensive. The problem with my survival mode was that it became permanent and not temporary.  I was always trying to anticipate and manipulate the future. This frantic and desperate state left me hopeless to enjoy my present.

In my quest to make everything “right” I got overzealous and failed to appreciate some of the strides made, large and small. But I’ve gotten better for not only my sanity but his as well. I was actually able to let go enough for Lan and his brother to fly up to Maryland and spend a week with their grandfather this summer. It was only a two hour flight but it may as well have been a world away.

I received an email from my father-in-law this morning describing how he enjoyed the kids’ visit and how they did just fine. My world didn’t break in two while they were gone. Lan had a wonderful experience with relatives he rarely gets to see. Letting my kids go it alone, without me, wasn’t easy.  However, it was certainly good for them. Some things cannot but taught. They must instead be experienced.

My child is now very proudly in public high school among his peers. He practically runs from the car to get inside. I will admit I can waver from proud to terrified in any given day. But, I am learning to let go of my fears as well. Cautious? Yes. Fearful?  Not so much.

The previous school years are becoming a blur, having passed so fast.  I don’t want to “endure” his high school years, I want to enjoy them. They too will be gone so soon. Every football game he so energetically cheers for, his fascination with school mascots, his enthusiasm at being part of the crowd, I want to celebrate. I can vividly remember years ago when he would hold his head down and shy away from people. He’s growing up. I’m growing…wiser.

Letting go the vise grip I once held gives Lan and I both permission to try new things and even fail. I don’t have to hold Lan’s hand upon every venture, milestone and accomplishment he seeks to achieve. It is more important that he knows my hand is available; always near, should he ever need to grab hold.

Is it ever enough?

Burdened down with the guilt that comes from working full time and trying to juggle the demands of a family, I often fault myself for not doing enough on my child’s behalf. A woman’s work is indeed never done in even the best of circumstances, but when you are raising a child with “special needs” the question tends to stab the conscience with the succinctness of a butcher knife.
As the only person in my pre-marital family who is not an educator, I still took it upon myself to teach Lan or have him review whatever material his teachers would cover. With an older son just one grade above him, it was always easy to grab materials in the summer time to preview and prep so that Lan would not become victim to his shortened attention span.
However, as the kids grew and the material became harder there was less and less I could do for my child. Being fairly well educated and a bonafide health professional, I was at a complete loss when trying to teach this “new math” now the standard in education. These kids were doing in middle school things I vaguely remember from high school! As my older son progressed through honors courses, I could no longer rely on him as a reference for what Lan would cover in school as done years before. I was essentially stuck with trying to figure it all out and find the time to do so all the while juggling my other obligations.
My work days on average tend to be long, usually twelve hours at a time. So on these days I am unavailable for homework, unavailable to answer questions or even to follow up on what exactly Lan should be doing in his classes. Fortunately, he managed to surprise me and his teachers by basically keeping it all together. He didn’t excel academically like his brother, a master of standardized tests in his own right, but he managed to hold his own! Consistently and frustratingly, Lan managed to somehow miss honor roll by one class throughout middle school. There always seemed to be  that one class, usually math, that kept him from the prize. He so desperately wanted to make honor roll like all of his friends.
The heartbreak of the report card always left me with a twinge of guilt. Could he have achieved his goal if I were more available to him? What difference would a couple of hours a day really make? Would it be enough to push him over that invisible edge?
Well, we’ll never know because we can’t go back in time and I can’t control my work schedule. Still, most mothers often wonder if they have “done enough” to help their child achieve his or her very best.  I try not to beat myself up over it. My husband helps as he can but is quick to admit, school just isn’t his thing even he has a Bachelor’s degree in business. I can clearly see why it takes an entire village to raise one child!
Surprisingly though, one good thing has come of this though. Lan has learned to be independent. He has also learned to be responsible since there is no guarantee that I am available to keep him on the right track. He now tells me when he has projects due instead of me prodding him about them. He takes initiative in regards to completing his school work, even more so than his “gifted” big brother. Maybe my unavailability was a blessing in disguise.
I can’t really teach independence while hovering over the child. His confidence has grown exponentially with my unavailability. He no longer turns toward me for answers but explores them on his own. I guess I should be grateful and accepting that where I am weak and insufficient, God more than made up for my deficiencies.
In hindsight, I can see this now. God prepared my child in ways I probably wouldn’t have the guts to do. I still have to prod Lan to “focus” but not nearly as much as I used to. In fact, he never seemed bothered by my lack of availability. I guess my guilt served no purpose other than stroking my own battered ego.
I have concluded that I will never have enough time to give toward my child as I think I should. Exhausted from my day job, I am grateful to have enough energy to complete my shift! It has only taken ten years to absolve myself of my guilt, ten years too long for the fact to sink in. God will do what I can’t, put the perfect people in place and watch over my child far better than I ever could.
I may never have enough time to spend, material to teach or even energy to spend entertaining my child’s never ending onslaught of questions. Yet, I no longer beat myself up over it and resign myself to being a deficient mother.
Lan doesn’t fault me for my absence and I shouldn’t either. I work because I have to like most women I know. It has taken years for me to move away from “should have, would have and could have” to “God’s got it, trust Him and it will be all right.” I only wish I could have learned this lesson earlier. But like most things of value, I guess it takes time to reach that maturity.
So, for all of you out there who wear the same shoes of caring for anyone with special needs and doubting what you do, faint not! Fear not! Fret not!
You will only make yourself physically and mentally ill and drive yourself crazy in the process. Trust God, knowing He can provide whatever you can’t and give you the energy and know how to do what you can. Sometimes we struggle so hard in our own power like treading water to stay afloat when we would be better off to simply relax and instead “float” atop the waves, allowing God to dictate our direction.
Will I ever be able to do enough? No, I’ve decided. But, I now realize that I don’t have to.
I could in no way ever imagine all that would be required of me mentally and spiritually to raise this child. At times it’s been frustrating but I never had to go it alone. Thankfully, I’ve had God’s help every step of the way even when I couldn’t see it at the time.
Trust God. Cut yourself some slack. Learn to be at peace and enjoy the journey. Never enough is okay. God’s got your back!

Faith Hope Courage

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