Expectations. Acceptance. Forgiveness. Moving On.

A simple title for a complex blog.  Should be as easy to do as it is to write, but it is a daily struggle for all of us, no matter your battle!  But while sitting at church recently,then following the service, I think it finally, really, hit me. God sent my son with high functioning autism to me for a reason. To teach me the true meaning of true forgiveness. But it’s more than forgiveness.  After much contemplation, I realized I had to start with expectations, acceptance, then forgiveness.

That day God spoke to me from the pulpit while another lesson was unfolding in real time. Let me give you some background.

My son has had a checkered past at church.  He was asked to leave the pre-school program and was seen by some parents as a disruption to the Sunday school.  This all happened while we were fighting for the school district to do an evaluation. We couldn’t see a psychologist or pediatric neurologist without the district eval. And no one takes your word when you are going through pre-diagnosis. And without the diagnosis, the judgement from others is constant. We were living in chaos, but I wanted to keep going to church.

To keep church a priority in our lives, my family and I put together an option to make church a safe place for kids like mine who have differences. The idea, with full funding included, was blown off by the minister at that time.  Between getting services for my son, my illness and making sure Queen Kong got what she needs, I eventually gave up on church and trying to make a space for my son.  Not God, I felt him with us and prayed to him everyday, but I gave up on some of his people. Ministers in there best intentions to spread the word to the world sometimes forget that Jesus went after the one, not the ninety-nine.

We stopped going because someone in a place of power deemed my son’s needs not important.  We stopped going because we couldn’t get our big idea up and running. A big idea that we thought would make change.  We stopped going because there were a handful of people who judged us and clearly said things about us.  (You have to watch what you say around kiddos – they are sponges and parrots!)  And we stopped going because we were tired and getting ready for church with kids regardless is exhausting.  But really the most selfish reason was we felt judged and less than because of how a few thought of us.

God has been working on my heart about going back to church.  We decided to try again.  We had to really give ourselves a pep talk to make ourselves get ready and go.  The biggest reason we gave ourselves was that we weren’t the problem.  The problem is how others perceive those who are different…diagnosis or not.  The problem is my expectation is that all parents accept children, warts and all.  My expectation is that everyone would agree that these children are important and are worth making changes for inclusion. My expectation is that people would open their children’s eyes about being patient and kind to kids who are fighting a big battle at a young age.  The truth is not everyone can support those who are different…so I have to adjust my expectation to avoid being hurt.  And hurt feelings hinder my ability to be an effective parent and advocate.

So now we are working on acceptance. God doesn’t make mistakes. And quite frankly, what I have learned from my son has made me a better mother and person all around.  And our friends and family who have leaned in tell us how much they have learned and that they feel like they see the world through new eyes. Amen!

So back to this particular Sunday. My son showed up decked out in his most handsome suit complete with pocket handkerchief. After children’s moment, I walked him to class. On the way to Sunday school, one of the older girls told her friend to “stay away from him” and pointed right at him.  I didn’t correct her. I was afraid of what would come out of my mouth if I opened it.  After I sat with him in class and he felt settled, I went back to service to hear the message.  Because after that, I really needed it.

Our minister spoke of Jonah, the reluctant prophet, and how he ignored God’s request to go to Nineveh.  What God had asked him to do was too hard.  He didn’t want to.  He was scared and it was out of his comfort zone.  He then discussed how God works through us for change.  He spoke of grace, healing and how true forgiveness can heal our wounds.  But what hit me was that Jonah did the bare minimum.  Jonah did the bare minimum and that small act changed an entire city.

When I picked up my son after service I did what every nervous parent of a special needs kid does. Immediately asked if everything was ok with panic in my voice. We were told everything was fine, but that there was an incident and then it was very briefly addressed.

Our son told us that the girl who had been told to stay away from him told him to show everyone his underwear. This isn’t uncommon for kids to give children with autism directions that lead to embarrassment or trouble.  We are lucky.  Our ABA therapist has worked hard with our son on managing these situations.  To our excitement, he made the right choice!  He ran from the girls and told the teacher.  In the past, he would have followed through with the request, gotten in trouble and then gone into fight or flight and a full melt down because he wouldn’t have been able to tell his side of the story.

I spent the car ride home with a tight chest and racing heart.  I was in pain that kids would bully my son who I love just as much, if not more, than any parent can.  Then I was pissed.  If this had been one year earlier, the ending of this story would have been much different. He would have been thrown under the bus and the judgement would have come tumbling after.  We would have been left holding the bag.  Instead, the fact that another normal child tried to embarrass him was blown off because “it wasn’t like her”.  Where’s the justice?  It’s human nature to ask that question. That’s what we want when we have been wronged.  I told myself that we are never going back.  And then, my son asked if we were going back next week.  What?!?

I have been avoiding church, much like Jonah was avoiding Nineveh. I didn’t want to go. I didn’t want to deal with those few who are judgmental of my family.  God has been telling me to go back and I’ve ignored him. I have ignored those who embrace my family. Ignoring their constant requests and invitations to return to church by letting my hurt feelings get in the way.

What prompted our return was my son’s constant requests to go back. I prayed very hard and realized that we needed to go back. And then in the midst of deciding I was never going back, God reached out via my son again and reminded me that we just have to do the bare minimum.  We just have to show up while God is telling us to and then we have the chance to make change too.

As I noted in another blog, sometimes it is easier for us to isolate ourselves to avoid hurt feelings.  But now that we have fully accepted our son’s diagnosis we need to teach the world that they should accept him, as well as all children with differences.  That means we have to show up.  We must expect a rocky road to prevent hurt feelings. We have to accept that our path is different.  We have to forgive and move on.  Otherwise, others will keep us from enjoying our life, growing in our faith and being light to the world.  And our son is a light too bright to keep at home!

Moving On

#MusickMemories: Christmas Edition

Christmas 2015

It’s not Pinterest Pefection, but it’s progress!  The last two years this had no mantle or decorations.  Success! (Even though some of the lights on the new tree went out…whatever.)

Oh Christmas.  A glorious, but stressful, time of year!  However, when you have a child or children with special needs it can be a different kind of stress.  Shopping, cooking, preparing for family and making sure your work is done is nothing.  Going off schedule, the anxiety of gifts, seeing favorite cousins, aunts, uncles and grandparents can be more than their little hearts and heads can bear.  The sensory overload, meltdown’s and regression happens 10 fold and can cause Mommy and/or Daddy to want to curl up and cry.  I’ll give some top moments from our Christmas at the end, but here is a little background.

This time last year “Fire Ready Aim” was recovering from surgery to improve his sleep and I had type B flu and was quarantined in my room…literally. FRA was really struggling as he was pushed out of yet another school for the second time in 3 months and our sweet babysitter turned into a nanny running a “home school” from our living room.  She experienced the pain of seeing our boy be made fun of by kids, being shunned by other families and even being screamed at by an adult at a public park.  He knew the schools called him bad as the kids constantly reminded him.  To this day, when we drive past one of the schools he will say “I had to leave there because I’m bad” and I usually drop whatever I’m doing to make sure he understands it wasn’t his fault and that it led us to the RIGHT schools.

This season was much better.  Recovering from surgery hasn’t been a breeze, but Amazon and my husband helped to make it a little easier. It was also smidgen better since FRA has improved his social expressive speech so at least after a fit he can let us know what it was about and we can try to work it out. We didn’t put any gifts under the tree…the anxiety caused by the unknown was more than he could bear.  We didn’t push the “Santa is watching” message, because the literal interpretation for him is scary.  We were able to keep more days on schedule because of our amazing school and wonderful ABA therapist.  And now that I have various online support groups/resources like these, I am able to get tips from parents that help our son and us. As parents, we have a lot of room for improvement in 2016, but we are definitely more prepared than last year.

So here are the favorite #MusickMemories from Christmas Eve & Day 2015:

7. Daddy woke up around 4:30 AM on Christmas Eve to make sure that our kids could see the Santa at Northpark Mall in Dallas, TX, which is a big deal!  It’s become tradition and the pictures are worth every minute, even though the stress of dolling up the kids and praying they don’t destroy their outfits can put you over the edge.

6.  FRA telling Santa that he would make him a sandwich.  Santa asked him why no cookies to which he replied “Because sandwiches are delicious!”  Being a budding fashionista who loves accessories, he then questioned his belt and other accessories.

5.  Queen Kong not being scared of Santa and telling him she wanted a kitty.

4.  Our extended family loving on our babies a little harder this year knowing they survived a tough one.

3.  The addition of two super cute kittens that are in danger of being loved to bits. One of them has super patience and has become the Queen’s baby and has allowed her to push her around in her shopping cart.

Kitties

2.  FRA cuddling up to me tonight and letting me know in 5 year old terms how grateful he is and how much he loves us.

1.And FRA took first place during Christmas Eve service.  Recently, he learned about Hanukkah which opened up the conversation about the difference between Jewish and Christian beliefs.  I found a book with a CD we got from church that focused on Easter.  He listens to it over and over, every night and we have discussed it in detail.  When he has interest in a subject he will question you until he is satisfied you have told him EVERYTHING.  My nephews were sitting in the pew in front of us and FRA announces loudly “Did you know Jesus got screwed?!?” They all bent over laughing into their hands which further confused him.  Being worried he would yell it again, I whipped out my phone and googled “crucifix” and quietly explained why they call it crucifixion and not getting screwed to the cross. God bless him.  He even took his first communion and prayed to God to let him know he loved him.

I hope you had the little moments that make it all worth it. Let’s start seeing some comments!  #WorkingMoms – how do you make it easier this time of year? #SpecialNeedsParents – how do you reduce the stress and help prep your child for success during holidays?  #CancerMoms – I hope you had all the support you needed during the holidays.  Let others know what was or could have been helpful so that those supporting a friend or family member can do the little things that help.  Much like our fireplace, our year and holiday season wasn’t perfection, but it was definitely progress.  It takes putting it down in this blog to see that, so tonight I will count my blessings.

Now go to bed – the mess will be there tomorrow….

What would Martha Stewart say???

Santas_Workshop

With Christmas fast approaching and “Fire, Ready, Aim” being 5 and now REALLY understanding Christmas I had 24 hour to get it together.  Don’t get me wrong, I had a list, checked it twice, removed stuff that I realized in the end would drive me crazy due to 100 pieces or the piercing sound it creates and, of course, used my lunch breaks to get it together on Amazon. But it still, unfortunately, required me to do a few visits to the shops.  With FRA’s (my son with autism) need for a COMPLETELY silent house for sleeping there is no way to “just do a little bit each night” as someone once told me smugly. Solution? My poor husband did a 24 hour trip to/from his Mom’s house who live about 4 hours away.

After I slept in a little bit, because autism Mama’s need fuel, then took a quick bath, because chronic pain requires you to unfurl, I made a list and was ready to attack (after 4 coffee’s)!!! First, I dragged everything out of the hiding places to make an inventory.  Then from 12 PM – 8 PM I shopped…which took a little longer than planned.  I live literally across the street from my parents house and we have  lived in the neighborhood since I was born. I can’t go anywhere without seeing someone I know and I can’t pass up a good conversation!  Especially when I can talk to someone without 2 preschoolers dragging everything off the shelves and tugging on you saying “Can we go?”, “Can I have this?”, “But I need it!”, “When are we leaving?” and the one only mothers of kids with autism/aspergers can appreciate “Why is she so short?”…oh, the joys of complete unbridled honesty.  But I digress.

After a super long, and sadly enjoyable, trip to the grocery store my card was declined. Turned out, they weren’t used to me making so many purchases in one day that weren’t online – ha! Once I dragged everything inside, put it away, then took my pain medication I had to organize everything in piles.  This required another shot of caffeine and streaming Love Actually from Netflix (for the Christmas spirit)….followed by 3 other movies recommended by Netflix.  I then had to YouTube how to make a big bow for that ridiculously large bear in the corner that my husband got for Queen Kong.  The rational side of me knows it will get in the way, but the Daddy’s Girl in me overrides it by seeing how sweet it is that he wants her to have it!  OH! And don’t forget making deviled eggs and mini sweet and salty cheesecake bites for our first family Christmas celebration the following afternoon.  Am I the only one who tries to do TOO much? I mean, we are women.  Working women. You know, #WomenCanHaveItAll! <sarcasm>

Finally at 4:30 AM it was time to sleep before the kids and hubs came home at 11 AM.  And then it happened…the beep.  The beep that sent our Boston Terrier into hysterics.  The first one I ignored, but it took 15 minutes to calm Maizie (the dog) down.  The second one came right as I was dosing off and made Maizie even more upset.  The third required me to drag a chair around the house and remove the fire alarms.  The fourth time I finally found it. A dying carbon monoxide detector in one of the kids rooms.  I made the mistake of hitting one of the buttons which sent the dog over the edge!!  I FINALLY convinced Maizie we weren’t under attack and went to bed at 7 AM.

The point is, long ago, in my single super organized days, when I imagined being the Mom of little’s I thought I would have a room like this to be so organized that I could do holidays with ease!

Dream Santas Workshop

Picture from Houzz.com

That room in our house which had the potential now has a “child proof” cover on the door handle and we have it under lock and key.  It actually serves as the place where toys go for timeout and where we quickly put things when we are frantically cleaning before someone comes over.  #sigh

I know I’m in “the days you will miss one day”, but right now it feels like I will be looking back “lovingly” at a 5 year hurricane.  It’s exasperated by not having enough time, being in constant pain and fear that cancer will come back.  We are still fresh off my second round with cancer/major surgery and still mourning the diagnosis of autism.  Each of the those diagnosis’, especially contained in one year, carries the feelings of loss. You watch other families and see the things they can without little thought. Go to the grocery store without having to prep for hours about the noise and purpose of the trip.  Going to a birthday party, which again, takes a week of discussion and careful planning so your ABA Therapist can come to assist him through interactions other children never have to even think about.  The meltdowns over slight changes that leave you feeling angry and sad.  Angry because it’s so frustrating to try and calm someone down over something you think is silly.  But sad, because you know he is coming from a place of fear and is still too young to express it with words. The isolation because people don’t always want to deal with your families “special needs” at their house, a special event, their vacation home, etc.

My little family loves each other fiercely. My son and daughter still run towards each other and bear hug when they see each other at their day school…every day!  But the advice given with the best of intentions from others cuts like a knife.  So I just smile and nod so I don’t scream “YOU DON’T GET IT!”.  My hope is this blog will help us find other families dealing with the same situation.  I also hope that it will help those trying to support families like ours on ideas of what to say or do.  The truth is we aren’t just isolated due to our situation, but sometimes we isolate ourselves so that we don’t have to be rude and say “You just don’t get it and I don’t have time to explain it to you”.

I’ll sum it up by saying I’m mourning the life I envisioned and am doing the best I can….even if it takes me all day and night with a skitzed out dog at my side. #ThereIsLoveInOurMess