We didn’t get good news yesterday. They told us our sweet Knox has Autism.
I feel like I’ve been punched in the stomach. I was totally blindsided by this. I had prepared myself for a possible PDD diagnosis, but I didn’t imagine that he was anywhere close to being “bad” enough for a full Autism diagnosis. It’s been an extraordinarily emotional past 24 hours.
We went to the evaluation yesterday morning, and Knox was in such a good mood. He was in rare form, though, hyperactivity-wise. He was pretty much bouncing off of the walls. The two women that performed the evaluation were so, so sweet and very knowledgeable. The center was set up into three rooms: a “living room” type area with couches where we sat and talked, a huge playroom with tons of toys where they watched Knox play independently, then the evaluation room, which was mainly empty aside from a few items they wanted to use during the evaluation.
We talked about Knox first, and went over paperwork and some questions with one of the ladies while the other watched Knox play and took notes. They watched us interact with Knox and praised our parenting techniques, saying that he responds so well to us and that we are doing everything just right. That felt good to hear, even though I would much rather have heard that my kid was fine and that I was a crappy parent over that he has Autism and we’re good parents. I don’t get to choose, unfortunately. After we talked, they did the ADOS (Autism Diagnostic Observation Schedule) evaluation. Knox was very hyper and didn’t want to listen to some things, but then he did a few things that surprised us. They had a pretend birthday party for a baby doll, and while he had no clue what she was talking about when she asked him to blow out the pretend candles, he loved feeding the baby the play-doh cake and even laid the baby down on the blanket to go to sleep.
Before we left, they told us how amazing Knox was, how sweet he is and how we’re doing everything right. That she wished she could see him as a teenager to see how he grows up. We left feeling so hopeful and upbeat. Trevor even asked me, “So do you feel better, now?” And I did. Stupidly. We went to eat lunch and headed to pick up Brody from my mom then went home. We had to wait around for their call with his score. That was a tough wait.
She finally called just before 5. She said that Knox had met the criteria for an Autism spectrum diagnosis. I sat there waiting for her to tell me it was PDD but she never did. So I asked, and she said they used the criteria for Autism. And he had it. I felt so betrayed to hear that. How could she have sat there and seen my wonderful, sweet little boy then tell me something like that? I sat there, fighting back tears, while she explained and justified their scoring and evaluation. I wish I could say that something didn’t make sense, but it all did. They did a thorough evaluation of him and it all made sense. But then it doesn’t. My mom heart is absolutely broken. I searched for some absent positive in our conversation and took notes feverishly the whole time I spoke to her.
I asked about prognosis. They can’t tell me that with any degree of certainty because they don’t know. Every child is different. Helpful, right? Their evaluation does not measure intensity. It’s more of a “yes or no” type thing. She did tell me she felt it was more mild, and that she would consider Knox to be high-functioning. She said he does not have any cognitive or adaptive impairment. That he’s very bright, curious, determined and sweet. She said he’s an amazing child. And he is- that part I know they got right. She said not to expect any less of Knox than we would of another child because he’s capable of so much. She thinks he may thrive with more structure in a school setting, that it may be what he needs. She did say that his activity level may have skewed his score slightly because he wasn’t paying enough attention to instructions. But that it probably wouldn’t have made enough of a difference to change things. I hung up and absolutely fell apart. I’m still falling.
Trevor isn’t dealing with this. He was very irritated with me for crying and freaking out because he doesn’t put any stock in this diagnosis. He insists that Knox is fine. That he’s on the fence, so to speak, and could fall off on either side- one side being Autism and the other being Neurotypical. It’s hard. This is how he’s dealing with things, but I need to be realistic to deal with this. He isn’t denying that Knox needs therapy and is pro-intervention. He’s just not wanting to hear the “A” word.
I didn’t want to hear it either. I feel like someone just branded my child with “Autistic” across his forehead.
I don’t see him differently. He’s still the same Knox he was on Monday. I still love him just as much. But my gosh, I know how many narrow-minded jerky people ARE going to judge him and look down on him and wonder what’s “wrong” with him. It kills me. I’d rather chop my own leg off than to have him hurt for a single second. It’s not as bad now because he’s two years-old. People can take these “different” behaviors and chalk it up to the fact that he’s a toddler. I worry how he’ll be when he’s older and it’s obvious that something isn’t totally “right.”
But I’m going to deal with this. I’m going to fall apart and crumble and freak out and sob and be devastated right now. Maybe even for a long while. Then, I’m going to pick myself up, suck it up and be a rock for this boy. I’m going to do EVERY SINGLE THING in my power to help him. To give him the best life possible. To make sure he is okay. He will know that God loves him, and he will know that his mom loves him. If nothing else, he can be sure of those two things.
I fell in love with this boy before I ever knew him. And I will make sure that he has a fighting chance. He will succeed, and he will be okay. Autism will not define him or me. I will not let it. I will not use it as an excuse EVER, for him or for me. As my small group leader (whose son has PDD) told me last night “It will get better in time, and God is bigger than Autism.” Darn straight, He is.
Even though I sob as I type this, I know that our God has a plan for Knox. He gave him to me for a reason. He made me a mother for him. We were meant to be. I’m never going to understand “why?” even though I crave that answer. All I need to know is that I love Knox. He’s my sweet, sweet boy, and he always will be.
“Trust in the Lord with all your heart and lean not on your own understanding; in all your ways submit to him,
and he will make your paths straight.”
-Proverbs 3: 4-6
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{ 34 comments… read them below or add one }
I’m so sorry to hear this. I know that no parent ever wants to hear that something is “wrong” with your child. You want them to be viewed in that same perfect light that you seen them in. My oldest is 8 years old now and she has some major audio processing issues. That, in itself, doesn’t sound scary, but back when she was about to turn 7 years old, I asked her when her birthday was. She had NO CLUE. We have known for a long time that something wasn’t “right” with her. My husband hasn’t been in denial about it, persay, but he wasn’t exactly on board with the whole thing. I, however, have never been in denial about any of it. Doesn’t do my child any good to be. He just keeps waiting for the “light to go on” in her head and things will be fine and she’ll be talking at the same level that other kids her age are. She even had to repeat 1st grade after her not knowing her birthday. The school would have passed her right along to 2nd grade, but I knew she couldn’t handle 2nd grade work. I honestly didn’t even know how she was going to handle 1st grade work for the 2nd year in a row when she didn’t even know her birthday! She’s now in 2nd grade and still doesn’t know her days of the week. If you ask her what days make up the weekend she doesn’t know. It’s so incredibly FRUSTRATING for me to watch her be so behind. I don’t need her to be right up there with the other “normal” kids, but I’m frustrated that she seems to be a million steps behind them.
I wrote that long novel to say that you are definitely not alone in your frustrations and heartache. You are not alone in feeling lost and crippled and sad. I don’t know why God gave me not one, not two, but THREE kids with major speech delays. I don’t know why He gave my daughter something that would make life so hard for her. It’s easy to be angry with Him and wonder why. But, that isn’t going to help me or my daughter so there’s a silver lining in this somewhere. Where’s that crystal ball when you need it?!
Erica, I am sorry you know this hurt. I know God has big plans for our kids, even if we don’t know what they are, yet!
Oh goodness I am so sorry to hear that you’re hurting so much. Don’t feel bad for falling apart and reacting to the news. If you let yourself have that time you’ll be a better mom for it. Your sweet boy is still the exact same boy as he was before that appointment. He is so very lucky to have you as his mom. I know you’ll work so hard to do everything in your power to help him. Sending you many many hugs. So sorry that you didn’t get the news you were hoping for. XOXO
I can truly see God doing big big things through your family. Your small group leader is so right, God IS bigger than Autism, and God makes no mistakes, ever! You are the absolute perfect Mama for that sweet boy, and he is absolute perfect son for you- fearfully and wonderfully made. I will be praying for y’all! If there is anything else you need, please let all of us know. I think you have an army of people praying for you right now, so take comfort in that. Hugs and love to you!
Heather, thank you, please know that we appreciate each and every prayer.
I know this is not the news you wanted to get and for that, I am sorry. But I know that Knox will have an exceptional and extraordinary life. And I don’t know you but I know that because of the love that comes through in the posts you write about him. How lucky he is to have you for a mom! As moms we want everything to be perfect for our children and we imagine and dream what their life will be like. Keep dreaming for Knox! He has been given this label but he will contribute to the world in amazing ways and he will be happy. Remeber that when the world seems the darkest and you feel lost that God is there waiting for you and He will carry you and guide you through. And He will do the same for Knox. Hugs.
I am so sorry to hear about this diagnosis too. In my mind, you are doing things EXACTLY right. You have sought intervention, you have really looked at how to help him and give him exactly what he needs. I have been reading and seen you has a strong mother, someone who does right by her children. And now this. But you’re right when you write that God is bigger than Austism. And bigger than a husband who doesn’t want to see things the way the professionals say. I saw a woman once on a ‘baby story’ on TLC that had two kids with a genetic disorder. Her words struck me. She said she was honored to take care of these precious children because God gave them to her. God felt she could carry the burdern of love for these children in a way that perhaps another mother couldn’t. And I’m not saying Knox is a burden. I’m simply saying that maybe God sees something in you and your character and knows that you’re going to be (and already are!) the perfect mother for Knox, exactly what he needs.
I cried reading your post – the love you have for your son rings through with every word. I’m so sorry that you’ve received this news. You’re in my thoughts xxx
Read something in the daily devotional book, Jesus Calling, yesterday that I wanted to share with you.
“Understanding will never bring you Peace. That’s why I have instructed you to trust in Me, not in your understanding.”
I’m praying for you, Knox, Trevor, and Brody during this time.
Brooke, I have that devotional, and the past two days, it was like it was written exactly for me. The Bible verse at the bottom of my post was from yesterday’s devotion. God finds a way to speak to us when we need to hear it the most. Thank you so much for your prayers!
praying for you and your sweet, handsome boy!
Our God IS bigger than Autism. I am so sorry for you though because I know your heart is hurting. Knox is one lucky boy though to have such a loving momma. Prayers for all of you!!!
Hey Jessica,
I left a comment on your facebook page, as I am the mom with three sons on the spectrum–all different places on the spectrum. I know how hard the initial diagnosis is, but I don’t feel the “label” has hindered my boys developement in anyway. As far as where they are in life right now, my oldest, 28, graduated from college and has a great job with a big box electronics company. My 19 year old will be enetering college, graduated with honors from homeschool, and wants to be a novelist. He currently writes 50 page short stories. And my youngest, 13, is a rock star in homeschool, and is learning to advocate for himself. I gave myself 2 days to grieve with the initial diagnosis of my oldest, and then mama bear took over. I won’t sugar coat it, you will have to fight to get him what he needs, but the love you have for him already tells me you are up to the challenge. You can do this!!! Please, please, please, do not be afraid to reach out to those of us who have been there/done that. I am such a better mom of my six for the patience that these three boys have taught me. Let me know if I can ever be of help.
My heart sunk reading this because I could actually feel the pain you are expieriencing through the words you wrote. I am so sorry for the news. It must be absolutely devastating. you have every right to feel how you do and to be angry, confused, frustrated, etc. I know from following your blog that when you have gotten through those initial feelings, you will find a way to persevere and find the positive side of the situation. You are right, God does have a plan for Knox. He is such an adorable little man, and you should be very proud of him and of your parenting skills. This will just be a stumbling block in your life with him but I have a feeling you will eventually turn it into a stepping stone. Hang in there, and huge hugs to you and Trevor.
Regardless what the diagnosis is- Knox is still the same Knox you gave birth to and love with all of your heart. Autism will not define who he is as a person. It’s just a mere technicality and that’s how you should think of it. No one in this world is perfect. We all have flaws. That is just a slight flaw for him, but in no way meant to seperate him from the rest of the world. You are blessed to have him and he is blessed to have you, his dad, and a family who cares so much for him. It’s going to take a lot of understanding, patience, and maybe a small sacrifice to raise him- however, it’s not impossible for him to grow up to be smart, successful, and a great man one day!
Jessica, I’m so sorry to hear about your news regarding Knox. It’s every parents worst fear that something may be “abnormal” with their child. When you feel up to it, I personally would like for you to tell us the warning signs you saw/see in Knox. My daughter is almost 22 months and half the time when I call her name she doesn’t look at me, almost like she is ignoring me. I feel like she is developing normal otherwise, but that part drives me crazy. Then our pediatrician told us at her 18 month visit that she “SWEARS” our daughter is NOT autistic, just based on a quick 5 minute interaction. We didn’t ask her for her opinion, she just randomly told us, and I thought that was kind of inappropriate. Anyway, hang in there. I can’t imagine what you are going through but I will be praying for the best possible outcome for Knox!
I am so sorry you are going through this difficult time. I cannot imagine what you are going through but I understand how life changing this will be for your family. One thing I have to say is that it is SO obvious that Knox is an amazing, intelligent child. All children are a blessing, and even though he has received this “diagnosis”, it will never limit him in what he truly is capable of doing in his special little life. The other very obvious thing is how amazing a mother you are. Knox is a blessed boy to have you as his mother and cheerleader! As you know, God chose you to be his mother for a reason, and even though there may be challenges ahead, there is no doubt he will receive the love and support to help him grow into a wonderful person! I will continue to pray for your family that God gives you all the strength and courage you need.
Jessica – I’ve been following your blog since we were pregnant at the same time, and we now both are mother’s of two sweet boys. I read your blog all the time, and I often LOL, because I can relate to so much of what you are going through with your little guys. I just wanted you to know that I am praying for you, and I know that you are going through such a difficult time. It’s okay to give yourself time to grieve a bit and then work to advocate for him and do all that you can for him. He will do great things. He is a precious, sweet little boy. And like you said, he’s the same boy that he was before the diagnosis. You have such a great circle of readers and family and friends who are praying for you and seem to be such a rock for you. You are a wonderful mother, and Knox is so blessed to have you. Prayers from GA!
I am sorry that you are going through this struggle. I wish that you didn’t have to get that phone call and that you didn’t have to type this blog and that you didn’t have to worry about people thinking your son is different.
However, I work with a lot of Autism Spectrum children and during graduate school I worked front desk at a neurodevelopmental pediatricians office – just from following along on your blog, I can already tell that Knox is higher functioning. I am actually shocked by the diagnosis myself (just from what I have read). I have worked with families who have children that cannot communicate verbally at 10, families with violent toddlers, families in which all 3 boys are diagnosed ASD. It is going to be just that much better for Knox because you are great parents, you will provide him with what he needs and he will thrive – I just know it!
I think (I know) you can look at Knox and still see all of the billions of blessings God has given you in him. God will continue to bless him and lead him to do great things. God has a plan for him and for you – he just hasn’t revealed that yet. I love that Proverbs verse – I wish I could always be so trusting.
Hey sweet Momma!
I know on a lot of levels I can’t say I know how you are feeling, because I am not you. But I can tell you that your reaction is very typical of a lo of parents who get any type of label slapped on. I’ve read your sweet blog since you were preggo with Knox, and I would love for you to vent, or ask questions of me anytime you have them. I (by profession) am a preschool special Ed teacher. I have walked hand in hand with many families a they go through evals and new diagnoses. I always try to explain that labels are only given to help your little one in the long run. Labels can be an ugly thing, but they can also give you answers and direction in helping Know thrive as you always planned on him doing. There are a lot of therapies, services, resources out there to help you in your journey, but prayer and trusting God has Knox’s plan all figured out is going to be your focus from here on out
. God has every confidence in you, and plans wonderful things for all of you. He knows you are strong, He knows you at loving, He knows you won’t give up. Just know that we are praying for you and know things will get better. Some days are going to stink, but most days are going to be fabulous. Structure, schedules, and a whole lotta love 
.
I am so sorry that you’re having to deal with this. I am in the same situation, & some days I deal with it like a champ, then other days I feel like I can’t breathe or think.
My son is younger, he’s 1.5, but there has been something going on since 6 months of age, that my husband doesn’t “get”. We have early intervention, & right now were just calling it sensory processing, but as he grows up, we’re starting to see new things. He can be playing with his truck, & can’t hear me, or even look my way…he would rather play alone, then interact fully with us, unless we’re being physical. Ie chasing, tickling….
Then there are days when everything seems normal & I start questioning if I’m going crazy & he’s just fine!
I couldn’t even begin to imagine how hard this is. I don’t have much to offer, but prayers for you and your sweet family.
Hi Jessica,
I work exclusively with children under age 3 on the Autism Spectrum. I know it is so hard to hear the diagnosis, but I wanted to thank you for being so awesome to Knox. I know you will do everything in your power to get him the best intervention you can. I can tell by reading your blog how amazing Knox is, and it appears he has a lot of potential! I will be keeping your family in my thoughts as you go through the process of dealing with the news, finding intervention for Knox, and of course his future. Take care.
I am sorry that this was such a blow to you. You’re right, Knox is the same today that he was yesterday and the day before. It’s just your perception of him that has changed. You’re in my prayers. ((hugs))
My heart hurts for you, Momma. I’m so sorry you received this news, but like you said, Knox is still that same sweet boy. The one you have always known. Nothing about him is going to change. (((hugs)))
My heart hurts for you reading this! I have several friends with Autistic kids, and I know how tough it can be for the families when they get the diagnosis. I know there is nothing I can do or say that will help, but please know I will be praying for your family.
Jessica,
I am so sorry. I can imagine that all of the feelings you are going through are normal and nothing is wrong with feeling the myriad of things you are feeling. You are going through something that is traumatic and you need time to grieve. I was talking to a friend yesterday whose second daughter was born with Down Syndrome and she said that it took about 4 years (hopefully not that long for you) to feel like she was coming out of a fog and for life to get back to “normal”, but now things are rolling along for them.
I’m sure you will be a huge advocate for Knox. I am an upper elementary teacher and we have an autism program housed at our school. I’ve seen many students matriculate into the general ed classroom by the time they end elementary school and I had the opportunity to have a boy with autism in my classroom last year. Every child has so much to offer and it was enjoyable to have him in our room. With the numbers of kids on the autistic spectrum increasing in numbers you can guarantee that there are many more early intervention programs out there now so take advantage of that early intervention.
I know exactly how you feel right now! I felt like I could have written that post except with the autism diagnosis replaced it with Dravet Syndrome. My sweet one year old has epileppsy and is being tested for dravet syndrome in two week. I am so sorry, you never want to hear something is wrong with your baby!
Hugs, hugs, hugs! Your post got me teary eyed! Your son is amazing and I know you will do all you can to help him succeed! Believe in God, yourself and Knox and I believe it will all work out. I’m so sorry you are having to go through this. This would be an extremely tough thing for any parent but you are an amazing mother and you will all succeed. Hang in there! Get your emotions out and find support for you and your husband! Thinking of you and sending you love and strength!
Kitty
oh hon- i’m not even going to pretend that i know how you must be feeling right now. i just want you to know that i care & you’re beautiful family is in my prayers.
knox is knox. & he’s perfect just the way God made him, you know?
p.s. i have 2 siblings with autism & they’re each special & incredible. <3
This post brought me near tears. I am so sorry for the news. But early intervention for Austism is so important, so you have that going for you. I wish you love and strength.
I don’t know how I stumbled onto your blog, but have been reading about your awesome little family for quite some time. You are truly, truly blessed in so many ways! I sat and cried when I read your post about sweet little Knox. I will pray for your family. I have a very dear friend whose son was diagnosed at age 2 with autism; he is now 13. Watching her family “grow up” with this disorder has taught me that it is not easy at times, but you have God’s help and your wonderful family and many happy times too. Give your husband some time, but encourage him to accept the diagnosis and dive in to help you and just love Knox. Like one of the other previous comments said, your momma bear will kick in and you’ll know what to do to get Knox the services and help that he needs. Learn, learn, learn and advocate for your child. Learn what services are available and use them to every extent possible. Learn as much as you can about the various spectrum’s of autism. I will continue to pray for your sweet little family.
I don’t want to be one of “those” people who gives you advice about your child. No one can know him like you and your husband do. I do want to encourage you though that my son is so much like Knox. He will be three at the end of this month and I know exactly how you are feeling. My heart hurts every time I go to the grocery store and see people look at my beautiful, intelligent, sweet son wondering why this child (who looks as though he could be four years old) does not speak in coherent sentences. I will tell you though that between the ages of about 2 1/2 and now he has made *so* much progress. His attention span has broadened greatly his vocabulary has grown (even though pronunciation still is not great) and he absolutely loves playing with other children. My mother-in-law is a pediatric nurse and she has repeatedly told me that children do so much maturing between the age of two and three. I know it’s super hard when there’s something wrong with your child and there’s really nothing more you can do to fix it. I battle with the same feelings of not wanting my child to be labeled or treated differently than other children. I think the thing that helps me the most is number one to remind myself of how far Jakob has come and celebrate his progress. No, it may not be on track with everyone else but he is doing awesome anyways. Number two to remind myself that the important thing is who Jakob is, not what other people who don’t know him think he is. He is smart, he is loving, he is kind. We can work on the other things like speech, attention to details, social skills but thank God he is a sweet boy. I really relate to your postings because everything you write about Knox is so much like what we’ve been through with our son. I just want to encourage you that it will get better and remind you to look back and celebrate how far Knox has come. You are a good mother and it will all be o.k.
I am soo sorry to hear about this. My heart is breaking for you. GOD will be there for you and give you and your family the strength and love that you need. Just remember Knox’s life isn’t over. There are many children out there who have this and grow up to be functioning adults. I have a friend who has 4 boys, and all of them are autistic; all of them are involved in sports; all of them have friends (one even has a girlfriend); all of them are good in school. This is something you will be able to handle.
I will constantly be thinking about you and your beautiful family.