The Blue Blob

Since official, professional therapy is not currently an option for the Beast, we have been looking for ways to still continue the therapy at home. Thus, the Body Sox has entered our household - in blue of course. It is helpful in so many ways - developing muscles, working on sensory issues, etc. (you can see all the benefits of the Body Sox here)

It certainly is entertaining!

Dear Therapy

Dear Therapy:

At first I worried about you. I hesitated to be associated with the stigma that your name comes with. Did we really "need" you? Did this mean that the Beast's "problem" was a lot more serious than we thought?

And now we have walked quite the journey with you. Twenty fifty-minute sessions. Twenty Wednesday mornings with twenty co-pays and twenty "Hi my Sally Ann!"s. Twenty times to see progress, over and over again.

Thank you for giving my little guy confidence. He couldn't even stand up straight for more than a few minutes at a time, and now look at him perfectly balanced on the rocking board while getting ready to toss his bean bag.

I never thought I would cry so much, although I've heard therapy does that to you. Every milestone, every tiny step taken in the right direction has filled my eyes with happy tears. A successful slide down the incline, an arduous climb through the hammocks, a joyful exploration in the ball pit, a tedious cutting out of simple shapes, a step into a tub of scary textures and facing the fears - all working to make my Beast a little closer to being "the same" as his peers.

And oh the encouragement from Mrs. Sally Ann! I leave you each Wednesday morning beaming with pride at the praise and kind compliments I have heard about my son. The benefits of therapy for him and for our whole family have been more than I would ever have imagined.

I am sorry to be saying goodbye, sorry that frustrating healthcare policies and insurance qualifications are preventing us from going further. If each session wasn't the cost of a small car payment, perhaps we could continue; but until the insurance company sees it our way, I am afraid that we will not be seeing you for a while.

Thank you for what you have done for my son.

---dedicated to the best, kindest, most brilliant therapist ever - my Sally Ann.

---pictures were taken on my cell phone, hence the lower quality.

Bury Me Momma!

Part of the Beast's "treatment" for autism is a 50 minute session with occupational therapist Sally Ann every week. She works with him on physical skills and fine motor skills, as well as coping with change and dealing with sensory issues. The Beast loves his Sally Ann and tries hard to please her. Sometimes, though, he needs a little more motivation to stay focused. This is when Sally Ann pulls out the "big reward" - being buried in the ball pit! Due to his sensory issues, he really enjoys being surrounded by certain things - water, for example - and the balls in the deep ball pit at therapy. If he does well, Sally Ann allows him to go into the pit while we bury him completely under the balls. (Personally I would never enjoy such a thing. The balls are freezing cold, and I hate being completely covered by anything!) This past week, I took a short video so you all can see how much my little man likes this reward! :)

It's the little joys that count!

Wednesdays

The Beast has a fifty minute therapy session every Wednesday morning with his dear Miss Sally Ann. No one has been more kind, loving, or helpful to Davey than Miss Sally Ann (who sports a British accent, to boot!) Sally Ann has encouraged him, brought him out of his shell, and helped him build his strength in so many areas. I am so grateful to her and thankful for health insurance that makes these rather costly visits possible.

However, those fifty minutes are very draining on my little guy. He is forced to consistently pay attention and make his muscles do things he would rather not do. When he comes out of neurotherapeutics, two things usually happen: he cries hysterically that he is not ready to leave Miss Sally Ann, and he begins a day-long meltdown. His brain simply cannot handle any more stress, and he throws tantrums at the smallest and simplest of things.

Next, he moves into what I call the "check-out" stage. Davey moves into his own little world, a faraway place that is very hard to reach. It is difficult to get him to obey simple instructions and impossible to have any sort of conversation with him. This is a time when he often does inexplicable things, like tearing all of the pages out of his favorite book. He may also sit in a corner and start reciting lines from one of his favorite movies or TV shows.

By evening, he will reach the "ridiculous" stage. My Davey will sit on the floor laughing hysterically at nothing. There have been times when he has lain on the floor in the middle of a store, eyes glassed over as he giggled uncontrollably. Besides the crazy laughter, he also makes strange noises and grunts a lot.

Last night, after our midweek church service, I had to stop at the store for milk and a few other items. David was in "ridiculous" mode by that point, which made us the receiving end of many stares, glares, and rude comments. I kept telling myself that I didn't care what these strangers thought - there was no way they could possibly understand anyway.

And then this morning I read this post. Her simple but compassionate words touched my heart and reminded me of the extraordinary task God gave us when He gave us Davey. Today I am so thankful for God's unconditional love and blessings. It's the same way I love my son. Unconditionally and without reserve. So who really cares what other people think?

Autism and Grief

After we got the official diagnosis of "high-functioning autism" for Davey from his evaluations, life suddenly got extremely busy. I had a wedding cake to make for a friend. I was behind on custom orders for The Framed Frog and so was working on them every spare minute I had. Both the Beast and the Drama Queen took turns being up all night with a stomach virus. I had to write scripts for the VBS puppets and then perform them every night with my puppeting friends. My sister had her baby. (long phone calls).

Finally, yesterday, the chaos slowed a little. I actually spent my morning in normal activities, like cleaning my kitchen and doing loads of laundry. Despite the Nerd being home from work sick, I managed to straighten up the living room and make the place look somewhat comfortable. After all, we were having company!

At 1:30, there was a knock at the door, and an energetic man named Scott came in, immediately taking off his shoes and bounding up the stairs in search of Davey. Davey, who almost never acknowledges when we have a visitor, especially strangers, ran up to Scott and began shouting random things like "Hey I have a brother" and "I like hot dogs!" Within five minutes, Davey was seated on Scott's lap being tickled while the Drama Queen filed in and out of the room, showing off each of her Toy Story toys to our guest. You would have thought that Davey and Scott had known each other for years!

Scott is going to be Davey's teacher at the Early Intervention Preschool in the fall. For two and a half hours every Tuesday and Thursday, he is going to be working with Davey on specific objectives that we have set for him. I was grateful to see the connection between Davey and his new teacher, and the two of them spent over half an hour just playing and talking and getting to know each other. Then Scott went over some of the specifics with me, drawing some diagrams out on a sheet of paper and talking. He left with a "See you at school, David!" It was a very hopeful and positive experience.

But last night, as the Nerd dozed off on the couch and I tried to get some things done, I found myself in tears. Frustrated that I would be crying over "nothing", I turned on the TV and tried to focus on my to-do list. Before I knew it, I was sobbing - the kind of crying that doesn't allow you to do anything else but cry. The Nerd woke up and asked me what was wrong. I didn't really know. I finally realized that in all the busyness of the past week or so, I hadn't allowed myself or even had time to think about David's diagnosis. The tears came fast and heavy, and strangely I felt embarrassed, as if no one would really understand why I was crying. I didn't really understand why I was crying. David's diagnosis is the best possible diagnosis we could have gotten. Unlike many other children on the autism spectrum, David has a wonderful vocabulary and is very loving. In fact, there are some days when I wonder if we should have even taken him in to get evaluated - he seems so "normal."

But then he has a "bad day" full of melt-downs when he reverts to speaking in gibberish and cries hysterically at the smallest things. He bites his siblings and does things that have no explanation. Those are the days that are painful reminders of why we chose this journey in the first place.

I guess I didn't really understand it when the special education therapist offered us a grief counselor as a resource. Now I know. There is grief for the obstacles and uphill battles ahead of us, and grief for Davey. He has such a promising future, but he will have to work harder at things than most kids. Making friends will never be easy for him.

The tears are still coming this morning, although not nearly as much as they were last night. I know that God is in control and that He has a special plan for my son; but I also know that it's okay to cry and release all those feelings and fears.

Today is going to be a good day. I just got a big smile and hug from Davey, and the Drama Queen has politely asked me to please stop using the computer so we can play. :)

A Diagnosis and Chai Tea Cupcakes

So another intensely busy week has begun. I feel a little overwhelmed with all the appointments and meetings for Davey, and the etsy shop orders keep piling up. I've had so many custom orders with specific deadlines in the past couple of weeks that I've stayed up past midnight every night and risen at 6:00 am just trying to keep up.
As many of you have been probably been wondering, we did receive an "official" diagnosis for Davey last week. After his long morning appointment with a speech therapist, occupational therapist, physical therapist, child psychiatrist, and pediatrician, Davey has been diagnosed with high-functioning autism. I have in hand an Autism Speaks 100 Day Kit that is helping us understand a little more of what the future is going to be like with this diagnosis. We still have a lot to learn, and tomorrow we will be discussing specific therapy options and preschool possibilities with the special education therapists. I am still processing the diagnosis - amazed that God found us worthy to undertake such a task and terrified of the responsibility and life changes.

I'll keep you all updated on our little man as we continue through this process. Davey did amazingly well throughout the long process and especially enjoyed the physical therapy room with its balance beams and bouncy balls. The therapist discovered that Davey has very little core strength, causing sitting up and climbing up into his car seat to be an exhausting task. This is why he has such poor balance and has difficulty doing simple tasks, like walking backwards or jumping off a step.

Meanwhile, I wanted to share a recipe I discovered recently when I was getting ready for a premiere jewelry party. I made these chai tea latte cupcakes - divine! and so here is the recipe:
Vanilla Chai Tea Latte Cupcakes
Ingredients:
1/2 cup sugar
2 oz butter, softened
1/2 cup milk
1/2 tsp vanilla extract
1 egg
1 cup flour
1 tsp baking powder
1 tsp cinnamon
1/2 tsp nutmeg
1/2 tsp ground ginger
dash of salt
1 or 2 chai tea bags
Directions:
Preheat oven to 350 degrees. Place liners into cupcake pan.(recipe make about twelve)
Heat up milk on stove, remove from stove. Place tea bags into milk, cover and steep for 5-10 minutes.
Cream sugar and butter together. Mix in egg and vanilla. Mix in milk.
Sift flour, baking powder, spices and salt together. Mix dry and wet ingredients together.
Divide batter into cupcake liners. Bake for 15-18 minutes or until a tester inserted comes out clean.
Allow to cool before frosting with your favorite buttercream frosting. Sprinkle with cinnamon. :)

Yummo! Happy Monday all!

Help for Davey

I have a wonderful son.

He is sweet, sensitive, funny, handsome, smart, and loving. You all know him as "The Beast", but to me, he is my Davey.

Over the past year, I have noticed little quirks in the way my little man spends his days. Every day, around 11:00 am, he runs back and forth from the front door to the back door for thirty minutes straight. It is impossible to get his attention during this time. In an overwhelming social situation, Davey will start babbling unintelligibly and stuttering. He also flaps his arms whenever he gets excited or nervous. He is obsessed with our vacuum cleaner and will sit playing with it for hours.

Lately, however, it has become obvious that these are not just "quirks". Despite having a great vocabulary and good speech patterns, Davey often retreats into his own little world. He rarely makes eye contact and never joins in conversations with the rest of the family. Many times he will ramble on and on in a one-sided conversation with himself. These things especially make it difficult to parent him. I frequently feel like he and I are in two different worlds and we just don't connect. Out in public, it can be quite dangerous as he is blissfully unaware of cars, other people, and even his momma shouting his name.

And thus the debate in my head and heart began. Is this stuff he will just "grow out of", as so many other well-meaning moms stated as they encouraged me to just be patient through this "phase"? Should I seek professional help? Will doing that label my kid unnecessarily?

When my husband started mentioning that he was concerned as well, I felt that at least my suspicions were validated. Together we decided to take our list of concerns to his pediatrician and see if we could get a referral to a specialist.

We met with the pediatrician today. I was so grateful that she listened carefully to everything we had to say and that she didn't laugh off any of my concerns. She felt that the behaviours and symptoms Davey was exhibiting may put him in the "austistic spectrum". More specifically, he may have Aspergers. Thanks to her, we now have a referral to a specialist who can give him a proper diagnosis and get us into the therapy and help we need.

I am relieved to have some direction and some hope in learning how to better help my son. I am also a little sad - every mom wants their kid to be "perfect." But he is - he is perfectly Davey, and we just need to learn how to connect with him and make our days together less frustrating.

It's going to be a long road ahead, no matter the diagnosis. But, "As for God, his way is PERFECT; the word of the Lord is tried: he is a buckler to all them that trust in him."

And we are trusting.