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.
Amanda… Such powerful words for a mother. As soon as I finished reading this (after I wiped the tears away) my 1st thought was: Jayden is so incredibly blessed to have Amanda as his Mother. God made him for YOU becuase He knew Jayden needed YOU. God will continue to give you the strength to grow and learn with Jayden in his journey through life. This photo is priceless and speaks volumes of what your amazing lil’ guy is going through. He has an incredible family with 2 parents that love him more than life itself. That is God’s greatest gift to Jayden.
Laura, thank you so much sweet friend for this beautiful comment. I loved how you said God made him for me. That comment alone makes me feel like we can do anything. Thank you <3
That is awesome for you to stand up and say that! I am so glad that you got some answers that will help both of you. He’s such a cute little boy, I just love the photo you have included in this post! Your decision to homeschool was a step in the right direction! Way to go Mom!!
Danielle Decker recently posted..My Morning Devotion
Isn’t that picture of him just heart warming? Poor little guy. I’m so happy that I finally got answers too, and that homeschool decision was probably the BEST decision I’ve ever made! Thank you for you support, Danielle! I’m so happy I found you in our little blogosphere ;0)
My heart is feeling for you Amanda. I know there is guilt for not finding out sooner but you can’t blame yourself. At least now you had the courage to go find out and you know what you are dealing with. That is wonderful that you are finding ways that work for you. You are such an amazing woman with an amazing little boy and I know things will work out wonderfully!
Tylaine recently posted..Feelings
Thank you, Tylaine. Your words are always comforting ~ thank you for continuing to support me.
Just last night my husband and I were discussing some of the unique difficulties my son has. They sound similar. My husband is a special ed teacher and he does not think our son will actually qualify for services because it is so mild (for my son). But still we are working on ways of helping him get back to focusing and explaining things so his brain can understand. One of the hardest parts is that I don’t always understand the connections his brain is making and that can make it even harder to explain things to him.
Upstatemamma recently posted..Familiar But Different
Jayden’s is mild too. The only people that actually know there’s something up with him is his parents and his teachers (in the past when he was in school) Kids were starting to pick up that something was different with Jayden, but it took 4 years of being in school with them to realize this. I never thought that Jayden would EVER qualify for any services, but thankfully he did.
My prayers are with you. I know it’s difficult sometimes to understand what the heck is going on, but finding out what exactly the deal is and finding ways to help him is amazing. Ever since I found out Jayden’s diagnosis I’ve spent hours upon hours reading up on all of it. I just want to find every possible way I can to help him succeed.
Oh, honey, how could you have known? You KNEW that something was off and you went to figure out what it was.
Shell recently posted..Blissed Out Thanks to LeadCheck
I did know, you’re right. But dangit ~ I wish so much that he didn’t have to go through all of this in his life. Poor little guy.
{{{HUGS}}} Amanda. You couldn’t have known. And yes, at least you did take him in now, you didn’t put it off. You are a wonderful mother and he is so lucky you’re his. xoxo
You know, I feel so lucky that he’s mine 🙂 This is a whole new journey that we’re about to embark on. I wish he didn’t have to go through all of this, but he does… and I’m grateful that God blessed him with me so that I can hold his hand through it all. Thanks for your support, sweet friend.
Hang in there hun. You will have the strength you never thought you had and you will be able to do this. You did get him help and it is a little easier for them to formally diagnose when the child id older. You worked with him and are a wonderful mom. Just because we bear the title mom does not mean we are perfect. Lots of hugs
Charlene Long recently posted..How Did You Do it
Thank you for stopping by and giving me such kind, helpful words. You saying that it’s easier for them to diagnose when they’re older definitely helps lighten the guilt load a bit.
I love you guys soo much! I’ve know jayden for so long & and so blessed to have known his as long as I have! I remember him in diapers & running around like a mad man! Lol Jk how could you have known? He’s an amazing kid who’s growing up so wonderfully because he has awesome parents who love him to pieces! Keep up the good work manda! Love love love you guys soo much! You should be proud of yourselves! 🙂 xoxo -amber
I love you, Amber. So much. Thank you for always being in our life. My children adore you “chicken butt” and I will always adore you. I’m so happy that you’ve always been a part of Jayden’s life and that you know the sweet little soul that he is 🙂
Oh, my heart is aching just reading this! I agree with the others, he is blessed to have you as his mother.
Andrew has ADHD and other issues, mostly unspecified. I suspected a form of autism but we were told no, as well. It can be extremely frustrating to deal with, and I wish I could figure out what goes on in his head. I wish we could better understand him, and he could better understand us. It’s a vicious cycle of being frustrated, then feeling guilty. He is older too so more is expected of him, and it’s hard to know if he’s incapable of doing things or just doesn’t want to do them. *sigh*
You all will be ok…you are so blessed to have each other!
xoxo
dysfunctional mom recently posted..Dont Hate Me Because
Not being able to understand what is going on in their heads is the most frustrating part of it all. It is such a vicious cycle 🙁 I hate getting frustrated, because I feel SO guilty afterwards. Thank you so much for your support, Cindy.
What do you guys do for the ADHD?
Sooner? NO – you DID pursue it – YES – how can you be on top of your game every moment. There is only ONE perfect parent. YOU ARE A GOOD MOM Amanda!
God Bless and Keep
Craig recently posted..Love sometimes gets married pt3
Thank you, Craig… your continued support and prayers has been amazing 🙂
I’ve written, erased and re-written what this comment but none of it expresses the right words that I want to say so instead I’m just going to write:
You are a fantabulus mother.
Jayden is a fantabulous little boy.
You are so blessed to have each other 🙂
Jenn recently posted..Motivating Monday!
Oh, Jenn. I can’t even begin to explain how much your love and support has meant to me. It’s amazing how we can gain such beautiful friends through blogging. Thank you for always being here <3
My heart is with you Amanda 🙂 It’s amazing how each one of our children and are So special and unique. This over whelming protectiveness we have as a mommy will always give you the strength and the love andwill help you both grow and learn together. HE is a breautiful little boy!
Thank you so much, Erin. Man, the protectiveness that we do have as mommies is beyond amazing and at times VERY overwhelming. I know that through this we will definitely both grow in strength, faith and love. Thank you for your support <3
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