Wednesday, May 5, 2010

Emotional Flooding Ahead

***Warning*** If you aren't in the mood for a pity party, stop here.

Being the parent of a special needs child is, really, indescribable. This is mostly because the words that would accurately depict what it is like on a day-to-day basis change, oh, hourly. Further complicating this with the fact that the special needs in our family are on the autism spectrum along with what the medical community calls "comorbid" diagnoses (ADHD, mood disorder) - and you've got mental and emotional scrambled eggs.

You put on a brave face; sometimes you break down. You deal with it - sometimes any way you can - to keep sane. Then, when you've had some sleep and you are thinking more clearly, you apply, to the best of your ability, the recommendations and techniques you've learned from therapists and doctors and teachers and counselors and whomever else you've sought out for help. And you take it one step further to educate those who spend any time at all with your children to give them as much understanding as possible in order to deal with them appropriately. This is only the beginning of the exhaustion.

The money flies out the window almost as quickly as your peace of mind and sense of hope for normalcy, and you try to quell the thinking and worrying about the future for your own sanity. Financial exhaustion.

I've been through the initial stages of a new diagnosis before. Our youngest was diagnosed with autism at the age of 2 1/2 years. It was full steam ahead from that point on to pull him out as much as possible. He is now 7 and his progress has been amazing. Most who do not know him or his history cannot see his autism until we tell them. But the fact remains that he is still on the spectrum and we must deal with the ways this manifests itself daily.

I do not want to talk here about our oldest son (19) and the continuing struggle with his ADD, which started at around age 10.

We are now two years into an ADHD turned mood disorder turned Asperger's diagnosis with our 12-year-old son; and we are still in the learning stages. In other words, we are still turning in circles. This should not feel so new. This should feel "old hat." But the truth is, you never get "comfortable" living with the issues of your special needs kids, usually because those issues are ever-changing and you are constantly adapting and making your way through something new or something old that is evolving or worsening. As a special needs family, there is no sitting back on your laurels. You are not afforded that luxury. Mental exhaustion.

So you drive older cars while those around you can choose not to. You take one vacation as a couple in 18 years of marriage. You fight with the insurance company over every $1 they try not to pay. You live in chaos sometimes because some days you just. don't. have. the. energy. to keep it all running smoothly. And sometimes, no matter how hard you try, it WILL NOT RUN SMOOTHLY. No matter what. And things not running smoothly makes all the issues of your children amplified. It's a vicious cycle.

You lose your temper. You lose your grip. And when the smiles leave your face for weeks at a time, you lose your friends. Because even though they think they understand, they do not. Unless you are dealing with three kids with ongoing issues and have, on some level, for the last nine years with no end in sight - you do not know. Unless you are in this house every day starting at 6:00 a.m. and ending at 11:00 p.m., you do not know. Unless you meet with the number of people that I have met with over time to help your kids, and have fielded all the phone calls and e-mails, and tried your best to keep it all straight, you do not know.

Unless you have to watch each of your children struggle so heartbreakingly on an ongoing basis that you question God's very plan, you do not know.

Emotional exhaustion.

This brings me to a small side note - if you happen to have any issues of your own, you are dead in the water - because you have nothing left with which to deal with it.

So you employ humor. You try to act like you can handle it all. You see others around you spending time doing worthwhile things in the world, while you can barely even keep your own sons on the right track. You may have talent, but it is buried below all the rubble.

I am feeling more isolated than ever right now. There have been times, over these hard years, that I've been able to get my head above water long enough only to look around, feel completely left behind, and be pulled back under again.

Nothing I would like to accomplish gets much past the initial stages these days because I get pulled in a million directions; and if I'm accomplishing something for myself, that means that some issue with one of my sons is going either unnoticed or will spin out of control soon without intervention.

Why all three? I do not know. Why us? No idea. Am I doing all I can? Probably not. Would I choose different children if given the chance? Not. On. Your. Life. I love each of them with every fiber of my being; and they are each going to do fantastic things someday.

God willing.

photo by Asif Akbar


  1. holly, you go right ahead and have your emotional flood. you get to do it. really. it makes you able to cope with the rest.

    my perspective is maybe a little different than most: i am a much-beloved and difficult problem child.

    and oh, what my poor mother didn't go through with me!

    the thing is, though, that even though i still have enough disability to need help, i own a home and a car. i am forty-five years old. i live on my own.

    i don't have a job; a couple of years ago that proved to be too much, and that was scary for everyone.

    but things are ok.

    and i pray that you and your family get through the hard spots and when you lose your balance that you regain it.


    i just wanted you to know that i'm still out here. i'm still reading.

    and i'm still praying.

  2. I love you my emotionally flooded friend. And though I may not understand, I am here and will always be. You are amazing and you need to know that. Your talents are just what your family needs and there is nothing more worthwile that you could be doing than being the momma those boys need. You are valued more than words, don't let this new car driving society tell you any differnt...or I'll drive over there in my 2002 minivan and kick your can:) Love you love you love you.

  3. Today it is the loneliness that is getting to me. The absolute isolation I'm feeling. Tomorrow it will be the lack of money, and in a week it will be the IEP and Section 504 meetings/case conferences.

    I hope to be back to joking about it all soon, because *I'm* not even liking myself right now.