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Honest Holiday Thoughts From an Autism Mom

Misfitdoll By Brooke Potthast

Christmas makes me reflect a lot about autism.  And that’s saying something because I think about autism pretty much all the time; but during the holidays I am faced with more intense feelings about it and how it impacts our family.  Somehow the losses seem greater and the blessings do too.
 
One reason Christmas hits me hard are all the beautiful cards we get in the mail.  We probably get about 50 cards that are made out of a family picture taken either on the summer holiday or in front of the Christmas tree.  Everyone looks so happy and trouble free.  Of course it isn’t true even if they send the bragging letter along with the picture.  I used to send these cards as well (sans the letter I promise).  I can’t send the cards anymore mainly because it is almost impossible to get a decent picture of our son who has autism. He is a cute little guy and no longer has the “dead look” in his eyes that he had for about three years after he regressed, but he refuses to pose for a picture and basically throws a fit when we try.  Not to mention the fact that even if he did take a good picture what autism mom who does biomed and therapies has the time to get the cards printed, addressed and mailed?
 
Another reason Christmas is hard is because it is such a great holiday for children and it is wonderful to experience it through a child’s eyes if they are neurotypical.  So every year you look for signs of a more neurotypical response to Christmas. Is he finally excited about Santa?  Does he understand the concept of presents? Will he actually play with his toys this year?  And then the question that haunts me is will the relatives see improvements? They see him about 3 or 4 times a year and always at Christmas when they can think back to last year.  Do these loving grandparents know that their daughter and son- in- law are moving what feels like heaven and earth in the way of time, money and energy just so there might be some improvements? 
And then this year another dimension has been added to my reflections.  You see my big kids have grown up.  My husband and I had three children while we were young.  Then 9 years later our little surprise showed up and he got mercury poisoned and the symptoms of autism came slowly into our lives.  The worst years of his autism coincided with the teen years of the big kids.  The difficulties of parenting teens just got mixed into the hell of serious gut issues and the endless needs of our ASD son.  We had all the regular worries of late night parties, pressure for the kids to make the grades for college, the hormonal ups and downs and of course a difficult culture at the big, affluent suburban high school they attended.
 
Well now they are all older and home for Christmas and they are…. kinda delightful!  One is graduated from college, one is studying at a University overseas and the other is a freshman in college.  They all want to be home with us and with each other.  No more bickering with us and clamoring to be with peers.  They are interesting and pleasant…who knew?!  But the flat side of this development is how much greater the burden of autism now seems.  Before when we were in the midst of an adolescent mess, autism just blended in.  Now as we are enjoying one another we have to attend to our ASD son’s need for outings and entertainment.  Don’t get me wrong our son is much improved and we all love him immensely, but he can’t join in our activities and unless you count watching TV and the computer he can’t entertain himself, so one of us always needs to be with him and we miss out on what the rest of this new grown up family is doing together.
 
Of course, I realize that one reason the grown up kids turned out the way they did is because of the struggle and brokenness of autism.  Isn’t that a big part of the message of Christmas?  That as a friend of mine said, “somehow we hope the mystery of Love is birthed each day in being broken and being poured out."  Our whole family has been broken and poured out for the little one who came later but somehow it helps us to be a bit less selfish and to look for the God who sent His Son to be broken for us and who indeed brings us love, peace and comfort in the midst of the struggle.

Brooke Potthast lives in Virginia with her family.

Comments

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WILLIE

Brooke great post

So real, painful and yet inspiring. I am working and thinking everyday of how I can help end this for all of us and espeacially our children. I keep asking God to give me the answers I know he hears all of us. After we get the answer to this we just have to make sure that we thank him loud and clear for his son Jesus and his miracle cure whatever it turns out to be. Great post Brooke

Lindy Schultz

Hi Brooke, Thank you for a beautiful letter. My son had the "nothing, nowhere" look for about 4 years, but his original personality and smile that earned him the nickname, Mr. Personality returned around age 6. He became interested in opening gifts around age 8, Loved Mickey Mouse and still is fascinated by people in character costumes. And of course he LOVES Santa, even still at age 18. He still has no speech,cannot print his name, does not wave Bye and has had many ups and downs, but as you know, the subtle progress and beautiful smile make it all worth while. You are fortunate to have a supportive husband in the picture...I am 2x divorced because of the stress...Never Give UP! Some days all you have left is HOPE and God's loving arms to rest in.

Brooke Potthast

Wow! Thanks to all of you for your kind and encouraging comments.
I appreciate all of you who really "get it" and took the time to write.
Brooke

Stephanie Blonigan

Thank you. Thank you for taking the time to write this. My mind is at ease knowing you are out there.
Stephanie

bensmyson

lj goes - speaking from experience, it's not a rock, it's a tomb. The more you can stay away from it the better. I'm only a little more than a year, year and a half ahead of you and have only made it this far because of the experience and love shared here at AoA and by some of the gracious trailblazers and fellow warriors who have reached out to me locally. God is with you and so are we.

LJ Goes

Brooke,

Thank you for this wonderful reporting of your perspective. I have been under a rock for months dealing with the reality of my son's diagnosis--vascillating between states of rage, gratitude (he can walk, he doesn't have cancer!) and unadulterated overpowering FEAR over his future, our choice of treatment, etc. We realized this Christmas that it's only been a year since we;ve embarked on this journey. We've only known for months, but it seems like a lifetime. But, I have never felt or lived more. I have never examined myself, my true self, so closely to determine my readiness and ability to stop autism from ravaging our family. I struggle DAILY, but I have never been closer to God than I am now. I believe my little ones are going to be better people because they are fighting this fight with us and they love their brother. Thank you for a glimpse into the future, for hope, and for the reminder that God is with us, in our lives, and in our boy! Best, lj goes

Gatogorra

Thank you so much for these beautiful and beautifully written thoughts.

Though our two injured kids are our only kids, we have noticed how well their cousins are growing up. We do wonder if, in part, these promising outcomes are because they saw such a catastrophe happen so close to home. Part of it is that they are seeing our kids improve year by year and it's turned several into believers and has given others at least some pause about vaccine safety and other common toxic exposures. No one's getting flu shots or using Tylenol anymore, that's for sure.

Still, instead of all of us and our kids having to endure the horror of the epidemic, I think most decent people could have read about these things in books and learned the lesson that way-- as a late friend of mine once said. Though we can thank ourselves, our families and each other for whatever wisdom we derive from tragedy, we won't be thanking the culprits who injured our kids for it.

Cynthia Cournoyer

You speak for so many of us. I got to the point where I just couldn't pretend anymore. And that was OK. People don't want to hear your struggles that always become worse during the holidays so they just didn't hear from me. And I didn't want to hear one more time, that there must be a reason you were "sent" a special child. I don't want to feel guilty but they make you feel that way, just for being sad.

AnaB

I don't send those letters either because apparently it is not pc to report anything but cheer in those...doesn't feel entirely authentic to me.

Renee Tag

Made me think of the year I was so distraught I didn't even "try" to take the pic. Thank God and this community, my boy has mostly recovered.

Teresa Conrick

Thanks for writing about the sadness of autism at the holidays. Yes, there is progress and unfortunately, sometimes regression but comparing our child or our lives to other families can be so very painful.

Your conclusion reminded me of this from "A Christmas Carol" ..

"Then the ghost takes Scrooge to Bob Cratchit's house. Inside the small house Cratchit's wife and several children are joyfully preparing their meager Christmas feast. When Bob appears, he carries a small boy on his shoulders and the boy holds a crutch in his hand. Bob tells his wife that on the way home from church that morning, Tim said that, "'he hoped the people saw him in the church, because he was a cripple, and it might be pleasant to them to remember upon Christmas Day who made lame beggars walk and blind men see.'"

nhokkanen

What a lovely essay. Thank you for sharing your many insights on this bittersweet season.

jealous ellis

Brooke I just noticed the other cards this year, not in my pile of cards but my parents. Grandparents showing off their grandchildren or even great grandchildren and I couldn't help but imagine what kind of life these people have. One card had a note that said, "celebrating Christmas on a boat and our anniversary in Vail" Wow how nice to have that sort of trust fund, from, I swear, the Tylenol fortune, to allow them the ability to get away from all the stress and heartaches a wealthy life with 2 healthy children can cause. But I can't help but think how the fuel expenses alone would pay my mortgage for a year. So why not go to the Greek Islands and sail with a crew of 3 to shake the cocktails and peel the shrimp.

I took 127 pictures of my son to get one to send out and everytime I send out a picture of him looking so typical I can't help but think what a liar I am. I should send a picture of his room after a meltdown with him sweaty and dripping in snot and tears, that would be a more fitting picture. Then again who sends pictures of the truth anyway?

michele iallonardi

Brooke,
I loved your post. It brought tears to my eyes, and I felt my heart swell up- there is just so much love in between the lines.
beautiful job~

amdachel

Brooke you sound incredible. No outsider can understand the demands you face and the sacrifices made by parents like you. And they can't realize the heartbreak that accompanies your stuggle.
God bless all your efforts.
Anne Dachel
Media

mary peck

Hi Brooke -

Hugs.

I know what you're saying about the Christmas cards, especially the ones sent from a resort someplace. The happy family. It has gotten easier for us, and I sent cards b/c I would never hear the end of it if I didn't, but then it kills me b/c people criticize: why did you send that picture? look at so in so's picture, how beautiful it is, blah, blah, blah... they have no clue how we moved mountains just to get a picture taken. Bah humbug.

All the best to you and your family.

K Fuller Yuba City

Wow, it feels like you are in the back pocket of our family. Our older 2 are 8 and 9 years older than our affected child. Autism changes everything for everyone! Autism changed their lives as well. But we are a tight little team. People outside of our team don't get it, they think we make the older two be a part of it. And that it isn't fair. We don't make them, they saw him regress, they saw their beloved gift of a baby brother (who was actually named after Santa! St. Nick) disappear into Autism.
We all celebrate how much improvement we have with our boy,but Christmas is hard. We vacillate between thinking how wonderful it is that he may always get to believe in Santa, and Oh my gosh, he is always going to believe in Santa. And We actually got a pretty good picture of the 3 of them this year! Getting those cards into the mail before Christmas didn't happen, but a New Year greeting was just as good.
Thanks for a very meaningful post.

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