The Official Diagnosis

Last Sunday I packed 2 of my kids up in the car and drove 3 hours away to do something that’s needed to be done for  a very long time.  I’ve blogged many times about my concerns with Jayden and autism.  I’ve blogged about taking him out of school, because he’s socially awkward and was being picked on.

I had an idea of what to expect.  10 hours at a facility meeting with specialist after specialist searching for some  sort of an answer for what has been going on with my son for years.

I walked in expecting to hear the words that no mother wants to hear.  The words of “Yes, your son is autistic.  Yes, this is something he will live with forever.”

I didn’t hear those words.

I heard something equally heart breaking, but I didn’t hear the word autistic.  I heard that my son has a communication disorder.  I heard that my son has ADHD.  I heard that my son has Sensory Processing Disorder.  But I didn’t hear the words autistic.

Jayden has a communication/language disorder called Semantic Pragmatic Disorder. Here is a snippit from Wikipedia to give you an idea of what this disorder entails:

Pragmatic language impairment (PLI) is an impairment in understanding pragmatic areas of language. This type of impairment was previously called semantic-pragmatic disorder(SPD). Pragmatic language impairments are related to autism and Asperger syndrome. People with these impairments have special challenges with the semantic aspect of language (the meaning of what is being said) and the pragmatics of language (using language appropriately in social situations).

I feel like a failure of a parent.  I always knew that something was different…. not by any means in a bad way, but just special.  I never knew the extent that Jayden struggled to understand at times what people meant.  When he said “I don’t understand” he really didn’t understand.  Why didn’t I pursue this sooner?

When we walked out of that all day appointment I looked at his sweet little face and I swear my love for him grew even more…. which is something I never thought was possible.  This innocent, sweet little guy was made in a way that he can’t be tainted by this cruel world.  He truly doesn’t “get” a lot of things.  He needs his mommy in ways I never knew he needed me.  And my heart is aching in ways I never knew it could.

He doesn’t “get” it when kids joke around with him.  He’s so literal that his feelings get hurt and I’ve always wanted to just protect him and keep him close to me.  This whole thing makes me feel THAT much better about my decision to homeschool him.  I can’t fathom throwing him out on the recess field now and expecting him to understand what the kids are saying and doing to him, when he LITERALLY can’t.

How did I not know this?  How did I not have a light bulb go off after the millionth time of him saying, “I just don’t understand.”  I thought it was Jayden trying to get out of things or his sensory overload taking place….. I never thought that he was struggling to understand the meaning of the things I was saying.  This picture I took of him the other night which was him not understanding and getting his feelings hurt.  Talk about heart breaking.  And even more heartbreaking is the way my heart feels for every time I got annoyed or frustrated at him for not “getting it”.

I’m taking a deep breath and being thankful that at least I did pursue it.  We know what we’re working with and now we start therapy.  We’re going to get him into an Occupational Therapist to work with him on the Sensory issues and a Speech Therapist to work with him on the language disorder.  With the ADHD I’m currently experimenting with a drink called {Celsius}, which has ZERO sugar and has caffeine and B vitamins.  AND it’s working!  I’m noticing that when he drinks the drink before it’s time for school work that he’s MUCH more focused!!

I have to move on from here on out and not dwell too much on what I should have done.  I guess the bottom line is at least I finally figured it out right?  I don’t know if this is even possible, but I swear I walked out of that appointment loving my little buddy even more.

He knows he’s different

Today we were watching Horton Hears a Who and Jayden says about Gordon, “Mom, he’s different or unusual huh?  I’m unusual aren’t I?”

I’m telling you that it seems like this past week with Jayden has been a roller coaster of emotions.

My reply to Jayden was simply this, “Jayden, everybody in this world is different and unusual, because if we were all the same how sucky would that be??”

Yes, I said sucky.

Tonight I just felt this heavy heart with things going on that I haven’t quite finished my blog post on regarding him and I just had to grab him and hug him.  And I told him, “Jayden I hope you know how special you are and that you are so loved by everybody in your life.”

“Mom, why did you tell me I’m special?  Is it because…. you know… I’m…. you know…. unusual like in Horton Hears a Who?”

When they say parenting is hard, you don’t realize quite how hard it truly is until you are a parent.  I know God doesn’t give you more than you can handle, and I know Jayden was placed with us, because God knew that we’d be the best parents for him.  So I need to have a little faith in myself as we embark down this road together.  I won’t have all of the answers for him, but I sure as hell can try!  And if anything, I will make sure that he knows that his mom is ALWAYS here, ALWAYS loving him, and ALWAYS accepting him for who HE is, because HE is everything to ME!

My Out of Sync Child

Yesterday I was on a twitter when I saw a tweet from a dear friend that I absolutely adore! Miss Cindy from {Get Along Home} tweeting a tweet about her being an Out of Sync Child. It quickly caught my eye as I have an out of sync child.

I bought this book, which I am actually embarrassed to say I haven’t completely read called the {Out of Sync Child}, because Jayden has always been “different”. I hate to even use that word in regards to him. Jayden to me is perfection. Jayden to me is a sweet soul that literally lights up the hearts of everyone he encounters. Jayden’s different, but he’s different in what I would call the most positive way.

Jayden has something called Sensory Processing Disorder. He has not been officially diagnosed, but I did just get a call from the the Child Development Rehabilitation Center confirming that they’ve received our paperwork…. now we wait for the appointment.

I have a son who is constantly confused in life. Things that I can’t quite understand how they’re confusing… he will find a way to make it confusing in his brain. For a long time I was frustrated and confused as to why my kid didn’t “get it”. He didn’t get what other kids clearly understood.

Then came in the food. This is definitely one of our biggest struggles with Jayden having SPD. He rarely will try anything new, and if the texture, smell or taste is too much for him… he will gag, and he will throw up. I thank God everyday that my child loves fruit. I just wish he would love some sort of veggie. I can name on 2 hands what my child will eat. And that’s hard, because I am a short order cook at home, because I cannot force my SPD child to eat the things that he honestly cannot choke down. My child is okay with sitting alone in his cafeteria at school, because he’d rather sit alone than get sick from the scent of another kid’s lunch.

My biggest struggle through all of this has been wanting to know how my little man feels inside. I want to be able to understand and to help him. I want to be able to grasp my mind around how he is constantly confused over things that my 3 year old isn’t even confused about.

I want to help him.

I want him to be able to succeed in whatever he sets his heart to.

I don’t want people being mean to him.

I want to shelter him.

I just want him to always know that he is so, so, so loved.

I feel so much gratitude in my heart for being blessed with him in my life. To me… Jayden is {perfect}.