One Year Later

Our backyard view reminds me of God's beauty when I can't see it anywhere else.

Our backyard view reminds me of God’s beauty when I can’t see it anywhere else.

I fell apart today. I mean ugly cry, unintelligible words blurting out as I try to convey to Ike what on earth is wrong with me. I happened to forget that Mark had OT at the hospital this evening after work, despite the fact that we have therapy at the hospital every Wednesday night. Today was different. It was a Jewish holiday so Mark didn’t have to be driven down to KKI for his program which meant less packing of bags the night before. Alas I awoke this morning, went to work and didn’t pack the necessary essentials, i.e. double stroller. We arrive and I break it to Jillian that she must walk from the car to the hospital so that I can push Mark in the single stroller because I can’t control both of them in the parking lot. This is out of routine for her and she starts crying. Mark is a contagious crier so immediately he loses it. By the grace of God I got both of them in the hospital and up to the third floor to meet Mark’s therapist. Given how upset Mark was, he spent the first half of therapy just regulating himself by swinging in the therapy swing. The entire ordeal was mostly a waste because of how upset Mark was when we got there, all because I forgot the double stroller.

 

Whoever witnessed me angrily wrestling our stupid stroller in the parking lot of Meritus Medical Center probably had a good laugh. Situations like these aren’t unfamiliar, they just represent a typical series of events that unfold on a regular basis. It also followed on the heels of several more frustrating phone calls with our insurance company. Though I thought Mark’s insurance drama had an ending, the story was resurrected when I received notice that all of Mark’s therapy, and doctor’s visits had been denied because I never notified both insurance companies that Mark was double covered (yes I did). Upon calling the insurance company they insist that the subscriber, Mark, call himself and state that he has an additional plan. I calmly explain that he’s two, but inside I’m screaming “if he could talk to you on the phone, then I wouldn’t have the need to purchase additional insurance to cover the gap that my employer’s plan has that excludes autism!!!” I spent an hour and 17 minutes on the phone with representatives from both insurance plans, and at the end of this particular call the insurance representative actually said to me, “you realize you just created a ton of work for me”. I was speechless.

 

The combination of my insurance defeat and the chaos of our therapy schedule left me in shambles tonight. Ike laughed at me, he said, “wow, I can’t believe it took you this long to fall apart”. He’s right. Without even realizing it, today marks one year since we first had an appointment with Kennedy Krieger to figure out what was “wrong” with our boy. I’ve had my moments of anger and I’ve been tearful when we faced some seemingly insurmountable walls, but I trudged on.

 

I read books, articles, listened to podcasts, joined Facebook groups, connected with every parent I knew that had a child on the spectrum and have made friends with several people I didn’t previously know. I’ve had lunch with and cold called people that I’ve never met just to hear their stories and understand what worked and what didn’t. I’ve flexed my hours and recruited our village of loving family members to drive Mark every day to his special speech program an hour and a half away. I get home late most nights because I’m either working late to make up for coming in late when it’s my turn to take Mark to Kennedy Krieger or I’m driving him to therapy. I spend weekend afternoons filling out evaluations and intakes for the following week’s appointments. Ike actually overheard Jillian playing with her dolls one afternoon saying to her babies that they needed to nap so that mommy (Jilli) could fill out the doctor’s forms. Cute, but sad. This has become our norm.  I apply for grants and research new interventions and therapies like nobody’s business. I’m relentlessly searching for the best approaches for Mark. I’m not unhappy with our new life. It gives me drive, grit and purpose. I’ve gotten past the initial mourning one feels when faced with the prospect of raising a special needs child, letting go of what I had expected and embracing what God has given. However, the wound is still there, and honestly still raw. The insurance battles, school system struggles, waiting games and unfortunate realities of limited special needs resources occasionally throw salt in that wound and make me want to beat the pulp out of a stroller!

 

We’ve come a long way in a year. Mark received an autism diagnosis before he even turned two. I thank God that adding Mark to wait lists and using my persistent nagging abilities warranted relatively fast evaluations and a spot in a highly sought after program. I’m thankful for God leading us to genetic testing that would ultimately point us to our answer for his physical problems and autistic behaviors. And I thank God for His everlasting grace and love, that always picks me up when I even begin to think about feeling sorry for myself.

 

I pray that this next year be filled with reached milestones, perseverance and many more friends made along the way.

 

Not only that, but we rejoice in our sufferings, knowing that suffering produces endurance, and endurance produces character, and character produces hope, and hope does not put us to shame, because God’s love has been poured into our hearts through the Holy Spirit who has been given to us.    Romans 5:3-5

Our First Day of School – 2nd Year of Pre-K & KKI Fall Program

Today, Jillian started her second year of preschool and Mark began the fall term of his program Early Achievements Program at Kennedy Krieger. Despite verbally prepping everyone a day ahead of time, we were still unable to get “the shot”, but these captured the moment 🙂

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the Bean lovin’ on those chubby cheeks!

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the Bean

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Mighty & the Bean

You ask her name and she will proudly state, Jillian Faith Auldridge!

 

One recent evening we were playing one of Jilli’s favorite board games before bed, and the tradition holds that throughout the game she will subtly cheat her away to the lead so that by the end she has miraculously won, each and every time. What I find interesting though is her method, and I think it says a lot about her personality. She is deliberate about her actions, only moving her game piece ahead by one or two moves depending on who’s watching, is mindful of those around her and carefully calculates her moves. I love watching her gears turn.

 

The social media trend has been for each child on the first day of school to hold a framed piece of chalkboard that details their grade and what they want to be when they grow up. Well I’m too wordy for that and I want Jillian to read what she was like, right here in this four year old moment of hers.

 

I want her to know that she roots her brother on, rejoices with us in the little victories, and that she always has someone on her heart when we are praying together. She loves praise and responds best when she knows she can earn a prize through her efforts. She prefers lunch food over breakfast foods, often choosing to eat ham and cheese over cereal and waffles. She tells the best stories, most recently she acted out a running scene with her friends that had me dying of laughter. And her vocabulary, as usual, is out of this world. Not only does she use big words, but amazingly they are always in context. She uses adverbs when she should, which makes her grammar lovin’ mama proud 🙂

 

Each year we pick a summer song and this year, though it’s a tad out of date, she chose Cool Kids by Echomith, and as I watch her in the rear view mirror mouth the words “I wish I could be like the cool kids…”, I think you are one cool kid, Jillian Faith Auldridge.

 

To read other reasons why the Bean is such a cool kid check out her section of the site: the Bean

 

Happy 10 Years!

Happy 10 Years!

Kissing - Edited

The divorce rate among couples who have a child with special needs is disturbingly higher than the general population.  And I totally get it. This life is stressful. I once read that mothers who have a child with autism have stress levels comparable to combat soldiers.  I feel a tremendous amount of pressure on a daily, hourly and minute by minute basis. From coordinating the beast of a therapy and appointment schedule, to handling ever changing self stimulatory and problematic behaviors, to teaching basic skills most kids naturally pick up, to riding the emotional rollercoaster that is autism. I’m sad when I see other people’s kids the same age and it becomes painfully obvious where we are. I’m sad when I see other autistic kids doing great things that my child is not. And I feel guilty when I sit down to do something that it isn’t autism related or is in no way engaging with Mark. And I read books about recovered kids, and even though they are inspirational, they always elicit a deep burdening pressure to recover my child.

 

Then add the conundrum of actually financing this life. The diet, the supplements, equipment, therapy, and insurance copays and premiums. A lot of the interventions available aren’t covered by insurance, so now there’s the financial pressure to make that happen. Not to mention we have another child who has needs just as important as our child with special needs. So our resources of time, emotional availability and money are all tapped. All of those challenges are very real and we often feel like our house of cards is about to come tumbling down each time some new issue surfaces. However, through all of this chaos we have managed to remember the importance of our marriage. We know that we have to work so much harder to take care of each other because this life is hard. Facing our multitude of challenges takes the strength of the Lord, and the encouragement of each other to be able to dig deep and rise to occasion.

 

Jenny & Evan's wedding - ike and angie pic

5 years ago!

As of today, we’ve been married for a decade. And in those 10 years we have nurtured an incredibly strong friendship and love for eachother, but as the stresses of life piled on, and on, we began to drift back and forth between feeling like roommates, to a loving couple who wishes they had more time for eachother. But in the past couple of months, when the stresses of our autism life have become their greatest, instead of crumbling, God has moved us to make our marriage a priority. We have started diligently, intentionally working on understanding each other. Even though we have been together for almost 16 years, we are still learning how we tick, and how to grow closer as the pressures of life continuously pull us apart. I pray that the next ten years hold even more opportunities for growth and instilling strength in one another.

Ike & Ang

 

“Though one may be overpowered, two can defend themselves. A cord of three strands is not quickly broken.” Ecclesiastes 4:12

10 Years Slideshow