Always trust your gut

I've been trying to figure out what I will post on my blog for Autism Awareness month. I've been looking through my books and online sources and kept thinking I should start with red flags. However, if you want to find the red flags, you can google it and...BAM! I decided to post about all the little things I noticed about Harrison as a toddler (before he was even 2) that were not typical but not taken seriously by medical professionals.

He played by himself for hours. As a toddler, this is not typical. Most 18-24 month old toddlers do not sit quietly and play for that long. We had no idea that this wasn't typical as he was our first.

He developed very early language skills. This alone is not a red flag. However, grouped with the others, it is.

He was very cautious and didn't take risks. He never climbed or jumped off of things. He was always so careful before he tried anything new. His developmental milestones were early or textbook, but once he developed all of his basic milestones, he became cautious.

He memorized books and movies. Again, this is probably not a red flag by itself. There were certain movies he could quote most scenes and a few books he knew from memory. We just thought he was a genius. He certainly is very smart, but it all makes sense now.

He lined up toys and sorted them by type. I used to joke he was very OCD in his playing. He went through a major "Cars" phase and would group all of his Lightning McQueens by color. He would proudly show us his masterpieces after spending an hour organizing them.

His play consisted of quoting movies or mimicking movie scenes. I used to tell Chris that I was worried he didn't have an imagination because he was regurgitating what he had just watched. He didn't have much interest in his toys that weren't in one of his favorite movies or TV shows (think Toy Story, Cars, Thomas the Tank Engine, Monsters Inc)

He became increasingly less affectionate. Not so much with me, but with others. He no longer liked hugs or kisses from other people. They made him very uncomfortable.

He developed food texture issues. He was a great eater until he approached two. Then suddenly he had a reason he didn't want to eat things and would have massive meltdowns if you tried to get him to eat his old favorites.

He hated change in routine. Most children thrive with a routine, but generally are pretty adaptable. He was not. It would throw him off course and rock his world.

The tantrums and meltdowns were exhausting and more frequent. All kids have tantrums and all kids will throw some pretty ugly ones in their life time. There is not much that is comparable to a spectrum child meltdown.

He developed sleep issues. He was always a good sleeper as a baby. He was the baby who slept 8 hour stretches when he was a few months old. When he weaned around 14 months, he went from 10 hours to 12 hours. He started having a lot of problems going to sleep and staying asleep.

He preferred adults over children. He would gladly hang out with adults in a room full of kids. Especially elderly men.

He carried heavy things all of the time. He loved lifting heavy things and dragging them around the house. This is actually satisfying the need for sensory input.

He didn't play with other children very well. He didn't initiate much play and didn't get along with other kids. He just preferred to play alone.

He started becoming afraid of loud noises. He used to love tractor rides with my dad and suddenly he hated the engine noise. Loud noises became scary. Movies in a theater were a nightmare.

He developed obsessions. Very obvious obsessions. His earliest obsessions were Toy Story, Thomas, and Cars. He LOVED them. He watched them all of the time. Played with his toys. Wore the clothes. Memorized the lines. He lived and breathed them.

He was very grumpy and argumentative. Basically he was a grumpy old man trapped inside of a little boy's body. He was the happiest baby ever, so this was a personality shift.

He was a potty training nightmare. He was 4 years old before he was trained. It was an awful time that I do not like to reflect upon at all.

He was very quirky. 

Let me reiterate that these qualities alone do not mean you have a child on the spectrum. Maybe even a few of them mean nothing. This is by no means an official checklist. These are things I noticed about him as a toddler that I felt were not typical.

My biggest piece of advice. TRUST YOUR INSTINCT! Seriously. God gives parents (especially mamas) a neat gift of intuitiveness with your children. If you suspect something is different, mention it. Don't blow it off. Don't think it will go away. It doesn't.

Another big piece of advice. Most pediatricians don't know what to look for with ASD/sensory stuff. In fact, if you have a high functioning child or one with just sensory issues, your child will likely not get diagnosed until they are older. Typically this happens in school when their differences become more obvious (like Harrison). Here is what that means. Your child has missed on years of beneficial therapies that could have helped him/her. I try not to beat myself up over not getting Harrison diagnosed until over 4 years later. My biggest regret is that fact he did not have early intervention that could have really helped him. Seriously...an early diagnosis is so much better in the long run.  For us, it changed the way he parent him (mostly) and for the better.

My door is open for encouragement, advice, and prayers. Please contact me if you need any of these.

My son, the Aspie

A few weeks ago, my world came crashing down. We were told some not so surprising news. Our son, Harrison, was diagnosed with mild Aspergers, Oppositional Defiance Disorder, and Sensory Integration Disorder. Again, it wasn't a surprise. I've known since before he was two, that he was different than most kids. He has always been challenging and quirky.

And nearly three weeks later, I'm still digesting it. My initial concerns were big picture things. Like is he going to be an independent adult? Do Aspies lead "normal" adult lives? Do they go to college? Do they get married? Do they have kids?

Let me backtrack. Aspie is lingo for Aspergers and it is not a derogatory term. 

On the car ride home, after our appointment with the psychologist, Chris told me how thankful he was for me. Because of my seemingly pointless psychology degree, I was likely able to pick up on things that might have been overlooked and we were able to identify Aspergers earlier. Evidently, it is hard to diagnosis and often masks under the accompanying co-morbid conditions, like ADD, ADHD, ODD, OCD, SID, etc. Many Aspies don't get diagnosed until they are much older and early intervention is certainly helpful and more beneficial.

The thing is, he has NO problems at school. Other than being quirky and random, I don't know that it has been an issue at school, period. Most of our problems are at home and quite frankly have made us often feel like horrible parents. So in a way, it was a relief to finally have answers. And we've been dealing with this for 5 years (give or take), so it isn't new. But learning how to help him is new. Learning how to help is overwhelming. He is going to need occupational therapy and we are going to try some play based therapy. Medications are an option, but not an option we are considering at this point. We can involve school and get an IEP, but that doesn't seem necessary at this point, so we are still praying for direction. And then, both of us feel like homeschooling might be a better option for him - so that is a major prayer focus as well.

There is no cure for Aspergers. This is not something he will outgrow or overcome. He will have this for his entire lifetime. Our goal is to give him tools to lead a successful life and use these Aspie traits to glorify God.

For those not familiar, Aspergers is a pervasive development disorder (which has evidently been redefined as of last week). It causes problems in his development - socialization, communication, behavior, thinking and activities. Aspies generally don't have delays in language, cognitive development or self-help skills.

Here are the major symptoms we see with Harrison:
• Often prefers to be by himself
• Unaware of how his behavior and/or comments affect others
• Seems uninterested in activities that involve competition
• Socially inappropriate responses
• Makes limited eye contact
• Impressive long-term memory for facts
• Seems almost obsessed with a particular topic
• Expects others to understand what he thinks without telling them
• Does not ask for clarification when confused
• Cannot imagine what others are thinking
• Cannot interpret other’s intentions
• Extreme reactions to minor upsets
• Feelings are all-or-none
• Cannot read emotions of people’s faces
• Fanatical about his interest
• Seems obsessed with interest
• Talks incessantly about his interest
• Little interest in other topics
• Pursues advanced knowledge about his interest
• Shows off knowledge in almost encyclopedic manner
• Often prefers to play by himself rather than with peers
• Uses playmates as objects
• Intense reaction if play does not go his way
• Controlling of playmates
• Difficulty sharing toys
• Interprets things literally
• Has an unusual tone of voice
• Talks in an overly precise manner
• Uses advanced vocabulary
• Poor coordination
• Poor ball play
• Odd gait when walking or running
• Overly reactive to sounds
• Overly reactive to fabrics
• Resistant to food textures

Ashley, Susan (2006-10-01). Asperger's Answer Book: Professional Answers to 300 of the Top Questions Parents Ask (p. 3). Sourcebooks. Kindle Edition.

Now, that isn't to say all of those manifestations are severe, but they have all been evident at some point in time and some more than others.

So here is the thing. Nothing changes, except everything changes. He is still the same wonderful little boy that I love so fiercely it hurts. He is brilliant, fun, moody, quirky, funny, unique, and fantastic. NONE of those things change. All of the things we have struggled with for so many years now make so much more sense. And from what I understand about Aspergers, the social aspect gets harder as they mature.

As his mother, I just wish I could take the bad parts away from him. I don't want him to hurt. He has really felt his differences this year and he has definitely embraced them but sometimes it makes him really sad. It breaks my  heart to see him sad. I want to protect him from the people that may not understand him. I want to protect him from the people that may not give him a chance because he is different than them. I want the world to see know what a wonderful little boy he is and how much he has to offer. I am definitely reassured when I research famous Aspies or people who where thought to have had it. Definitely some influential people in our history.

I am also reminded of one of my most spiritual moments. Early during my pregnancy, when we thought were were miscarrying him, I remember praying to God that Harrison would continue to grow inside of me. Begging with Him. Pleading with Him. I remember this incredible feeling of peace that came over and me and felt God telling me that this baby would do great things for Him. And I am constantly reading one of my favorite scriptures.

Psalm 139:13-14,  (A psalm of David) ” 13 You made all the delicate, inner parts of my body and knit me together in my mother’s womb. 14 Thank you for making me so wonderfully complex! Your workmanship is marvelous—how well I know it.

God made Harrison perfectly. He did not make a mistake. He created Harrison just as He wanted him. God made my precious boy as he is.

There are so many things that have been going on within my emotions over the past few weeks and I have really wanted to write about it, but I've been in somewhat of denial. I'm starting to embrace it so that we can move forward. But I ask that you pray for us in many specific ways. Pray that we can be the kind of parents that Harrison needs. Pray that we can be the kind of parents Kadie and Sam need as well. Pray that we can help Harrison work through some of his major struggles and use his gifts to glorify God. Pray for our family as we begin the process of therapy and learning to live our lives as a family with an Aspie child. Pray that financial restraints won't keep us from being able to give us the treatment Harrison needs. Pray for our patience. Pray for our strength. Pray for the decisions we need to make. Pray for our marriage and that it stays strong. Pray for our faith and that it is strengthened.