Joys of Autism: Friendship

Last week, I started a series on my blog called the Joys of Autism.  The series came about when I realized that most of my posts on autism tended to be a little more negative and dealt more with the difficulties and challenges of parenting an autistic child.  Although I don't intend to sugarcoat the realities of autism, as a parent to a kid on the spectrum, I can appreciate and enjoy the blessings and joys that come with the territory also.  I want to share those joys in this series, to help people better understand autism and to encourage parents or caregivers of those on the spectrum.

The other night, I was talking to a friend on the phone.  We were making final plans for a Saturday outing and just chatting about our kids and life in general.  After I hung up, I began folding a basket of laundry and thinking about my friend.  The realization hit me that she and I would probably never had met, let alone become such close friends, if it were not for David's autism. 

The truth is, our journey with our autistic son has led us to meet some pretty amazing and wonderful people.  I remember well the first time we encountered "Mr. Scott," David's teacher in 3-year-old preschool.  He was the first adult that seemed to have an uncanny ability to connect with David and get him to do things that we thought were impossible.  He patiently listened to our concerns, went out of his way to help us solve problems that we were having with David, and most of all genuinely cared about our kid.  David had several more teachers that took extra steps to help him hit milestones.  I will never forget "Miss Sally Ann," David's physical therapist at Neurotherapeutics.  She was so kind, so gentle, and undoubtedly David's biggest cheerleader during that time of his life.  His confidence grew in leaps and bounds as well as his overall body strength.  I looked forward to each Wednesday so I could chat with her and hear someone talk about my son in such a positive and encouraging way. 

Most of all, one morning while I was dropping off my three-year-old at his class, feeling scared and unsure of the steps we were taking with him, another mom approached me and introduced herself.  She had twins in the same class as David.  We immediately connected and starting to get together with our kids often.  Dawn is one of those rare friends that you feel like you have known forever.  We have chatted for hours about our families, schools, and churches; and we have found ourselves buried in deep discussions on faith, relationships, and our children.  We are dedicated moms.  We are loving wives.  We are faithful friends.  We are encouraging women.  But the thread that ties us together and keeps our friendship strong is our mutual desire to help our kids in the special challenges they are facing.  I can share all the details of a rough day with David, and she understands.  She doesn't just have compassion - she gets it!  She doesn't have to try to comprehend it;  she is experiencing similar issues and challenges with her own children.  She knows.

I am grateful for the friendships that this journey with autism has forged for us.  Did I mention that Dawn faithfully came by every morning to pick up David for school so that my big old pregnant self wouldn't have to pack up my crew and do it? 

She's a pretty amazing friend, and I am blessed to have her. :)

On Ambition

Is it too late to write a post about my New Year's resolutions?

Nah.  Taking a quick look over my blog will show you that I'm pretty much late at blogging everything.

I mean, the Truth in the Tinsel series is still dangling out there.

The Theme Thursdays are woefully behind.

I didn't share anything about our Christmas. 

Hmm.  Perhaps I need to have another resolution added to the list...

 

Anyway, here's the list.  Some of them are more like reminders to myself, and of course I well know the dangers of setting myself up with too much to accomplish and not nearly enough time to get it done.  Nevertheless, it's something at least at which to aim.

 

FAMILY

1.  I would like to spend more time with each child individually.  Each one of my offspring are amazing and unique creatures (oh boy are they unique!), and I don't want to miss out on that one-on-one time with them.

2.  Naturally, I want to spend some more time with the Nerd also.  This would not include playing Star Wars on the computer or watching a bland TV show while playing games on our cell phones. (in case he reads this)  I want to set aside specific time every week that we invest in each other.  Hopefully, at least once this year, I will also make plans for us to get away together, just the two of us.

3.  Additionally, the plan is for me to stay more connected with the family that is scattered everywhere.  And I mean, everywhere!  Dear siblings in Florida and Pennsylvania and Ohio and Canada and Indiana, I want to invest in my relationships with each of you.  And all my wonderful nieces and nephews too. 

 

ORGANIZATION

1.  I dream of coming up with a doable, healthy meal plan and actually doing it consistently every month.  I've got a head start on January by having a day planned to cook several freezer meals.

2.  I need to figure out a new housecleaning schedule and chore system for the kids and stick to it.  The old one isn't working anymore.  I will gladly accept any and all ideas in this regard.

3.  I want to change up our homeschooling schedule and breathe a little "new life" in it, if you will.  I want to fully embrace this path we have chosen as a family and take advantage of every learning opportunity we encounter this year.

 

PERSONAL

1.  I desire to discover the Bible in a new way this year.  I've already started with the She Reads Truth program and am absorbing it all.

2.  I need to make some new friends this year!  This is an area in which I am sadly lacking, although I have a few close and therefore super-awesome friends.  I want to be intentional and purposeful about meeting people and building relationships with them.

3.  Since my life is not busy enough, I want to find a hobby or some outside activity to devote time to every week.  It might be a cooking class, a book club, a sport, or anything-just-to-get-me-out-of-the-house-and-be-social-and-away-from-my-kids.  This has not yet been decided.

4.  I have become extremely lazy in the areas of food and fitness in the past few months.  No longer!  I am back on track in both areas and resolve to continue in them throughout the year.  I am using Mark Lauren's book Body by You for my fitness program.  As for nutrition, I am keeping a food journal in which I record calorie intake as well as how much protein, carbs, fiber, and fat I am consuming to help keep it all balanced.  My sweet mother-in-law is helping keep me accountable to this journal.

 

OTHER

1.  I am seriously considering furthering my education.  I have my bachelor's degree in elementary education, but I would like to either get my masters in education or perhaps in special education.  The Nerd and I are discussing ways we can make this happen.

2.  Obviously, some sort of resolution needs to be made about this blog.  I need to stop committing myself to things like Theme Thursdays that consume a lot of time and try to write posts more organically.  In particular, I would like to focus more on this new faith journey I am on as well as our dealings with autism.  We will see how it goes!

 

I am hoping to be "stedfast, unmoveable, always abounding in the work of the Lord" as I seek to carry these resolutions out this year. (I Corinthians 15:58)

 

Happy 2013!

Dear Brain, Please Stop

Ah, I haven't posted in a whole week! That's not to say that there aren't a host of them swimming around in my mind, though. The month of April is Autism Awareness Month, and as most of you know, our Beast was diagnosed with high-functioning autism almost two years ago. We are currently in the midst of a series of evaluations, teacher meetings, specialist meetings, and an ever-growing mound of paperwork. The Beast just celebrated his fifth birthday (fifth?!!!!) yesterday while he and I try to navigate through ever-increasing meltdowns, struggles to communicate, and most recently, bedwetting.

My brain is so literally filled to the brim with autism-related problems and hopeful helps that I am having trouble sleeping at night. I spend copious amounts of time researching and trying new ways to communicate and help my son. Then I worry and feel guilty that I may not be paying enough attention to my other children. It's a balancing act that makes me uncomfortable, but discomfort is all a part of parenting, anyway, as I am finding out more and more each day.

So while my head has been spinning and my heart has been hurting, life has still been a joy. God has given us more than we ever imagined, and my heart still smiles at the memory of my three oldest excitedly whispering to one another in their bedroom last night after a birthday celebration at John's Incredible Pizza. This weekend will be filled with Easter happiness and yes, probably a LOT of overstimulation for our little man.

Decisions are in the making for the Beast's education and other well-being. Next week, our whole family will be starting a new adventure as we tackle the Feingold diet(http://feingold.org/) and the drastic changes that will bring to our lives.

But, today, I am going to try to enjoy this day I have been given. The kids are playing with the Beast's new giant bowling set in the hallway, and Momma's got to show them her awesome bowling moves.

Of Changes and Autism

A few weeks ago the Nerd and I met up with all of the Beast's teachers to discuss his IFSP (Individualized Family Service Plan) for the upcoming year. I came prepared with a whole list of questions and things I felt our Beast needed to work on. Overall, the meeting went very well, especially since his teacher was new and really didn't know a whole lot about our son yet.

One thing that was especially concerning to me as a teacher is the fact that Davey does not have the hand control to make a simple line or circle on a piece of paper. When instructed to do so, he makes barely legible dots randomly on the paper and then gives up. At four years old, he needs to have this very basic skill in order to start learning how to write the various letters of the alphabet. I am hoping that the ideas the teachers came up with will help him gain the control he needs to master these simple skills.

However, near the end of the meeting, I was feeling pretty good about the direction David and his special education would be taking this year. I just had one more question for his teachers. I knew that this special class he currently attends is only for children age five and under, and I wondered what was going to be next for our Davey. Should we be preparing him to try to attend a "normal" kindergarten class, or would there be a special needs kindergarten class available for him if he needed it? When I presented this question, all the teachers looked at me blankly. Well of course he would be headed to a regular kindergarten class, I was told. Why would I think David needed to go to a different class? I was surprised but said simply that I was not sure based on his autism diagnosis of the previous year. At this bit of news, the teachers just stared at me. Get this - not one of his teachers was aware that David had been diagnosed with high-functioning autism! Granted, they had all noticed that he was a little "off" and thought perhaps he had an attention deficit disorder, but none of them had ever been informed that David is indeed autistic. I was shocked - somehow the information had been lost from point A to point B, and while his teachers have accomplished some amazing things with him this year, I wondered what more could have been done had they known the proper diagnosis??

So now we are facing yet another set of evaluations and tests for David within the next few months. I am so glad I asked that question, and yet I am concerned about what is next for us. Lately our sweet Davey has been having a lot of "sad days" - days in which he has meltdown after meltdown and sits and mopes in a corner for hours. These days are usually triggered by some sort of change - new teacher, new Sunday School class, baby coming, etc. Two of his good friends from his class will be moving up to the integrated class this fall, and I wonder how David will handle it.

Still, despite the worry and anxiety for my little guy, I know that a God much more powerful and greater than all of this is "handling it." He gives us so many promises in the book of Psalms:

"Wait on the LORD; be of good courage, and he shall strengthen thine heart: wait, I say, on the LORD." (Psalm 27:14) And what about "I will instruct thee and teach thee in the way which thou shalt go; I will guide thee with mine eye." (Psalm 32:8) We are beyond thankful that our almighty God is traveling this way with us!

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. :)

Giveaway! woot! woot!

Exciting news folks! My All Around the Mulberry Bush Wall Initial is being featured at 3 Garnets and 2 Sapphires! After you read all the extremely nice things Karen writes about my work (I am humbled and overwhelmed), you can enter a giveaway to win your own wall initial. If you are not in love with the Mulberry Bush design or have something different in mind, never fear! The winner will be able to choose whatever design they want for their wall initial.

This is an especially fun giveaway for The Framed Frog to participate in. Just a year and a half ago, I opened my Etsy shop with great misgivings and no sales for weeks. Karen kindly offered to host a giveaway on her site, and that giveaway, along with some other factors, helped launch my shop and get the sales going. Karen does a lot of great giveaways and is very candid and thorough in her reviews. Go check her site out!

A couple of other notes: We will be headed out to Davey's appointment with the special education folks soon, and I will update you later on that. Also, please don't forget this week's Found It Friday theme: sand and surf. The Found It Friday posts take a little time to put together, so start gathering your ideas and photos now. Mr. Linky was looking a little lonely last week. :(

Special Times

I am sitting at the kitchen table with all three kids clamoring for my attention. The Drama Queen wants me to confirm that tomorrow is indeed her half-birthday; the Spud is anxious to get down from his high chair. The Beast is demanding that I look at a picture on the wall, and if past behavior is any indication, he will insist that I look at the same picture several more times today.

Although I am subconsciously answering these questions and releasing the Spud from his chair, my real attention is focused on a stack of papers in front of me. Each sheet has the logo ESD emblazoned across the letterhead, and I am trying to find all the "sign here"s and "date here"s. Somehow, seeing all the paperwork that will potentially put our son in special education suddenly makes the whole situation much more real. On one hand, I am excited - eager to get some more answers and to get our Davey the help he needs to function socially.

On the other hand, however, I am also preparing for a very different meeting tonight. Tonight the Nerd and I meet up with the Drama Queen's preschool teacher and discuss "normal" things like where to purchase her uniform, what fun things she is going to get to do in class this year, etc. Tomorrow is the meeting with all the ESD folks, where the discussion will not be so "normal." Tomorrow, they will be deciding whether or not Davey is a candidate for Early Intervention Preschool. Again, I am happy and hoping so much that he will get this help; but it saddens me a little as well. As a mom, I never expected to hear "ESD" or "special education" used to refer to my child.

Strangely enough, it is not really a negative feeling. I feel blessed that God has entrusted us with the task of raising this special child. He must see something in me that I don't - not yet, anyway!

On Thursday, we will be gearing ourselves up for a very busy morning. The Nerd has taken the time off work, and together we and Davey will be meeting with several specialists throughout the morning. These meetings will result in the official diagnosis -Aspergers or otherwise.

Thank you all so much for your prayers and kind comments, dear readers. And local friends, I cannot thank you enough for the many spur-of-the-moment baby-sittings and advice and hugs. :)

God is faithful, and He knows.
"I will praise thee; for I am fearfully and wonderfully made: marvellous are thy works, and that my soul knoweth right well. My substance was not hid from thee, when i was made in secret, and curiously wrought in the lowest parts of the earth. Thine eyes did see my substance, yet being unperfect, and in they book all my members were written, which in continuance were fashioned, when as yet there was none of them. How precious also are thy thoughts unto me, O God! how great is the sum of them!" Psalm 139:14-17