On Friday we drove up to Charlotte, North Carolina, to see a developmental pediatrician in order to get a second opinion on Knox’s Autism diagnosis. First off, we almost missed the appointment because we were late- I called to say we’d be 15 minutes late because of traffic, and I was told “we have a ten minute window.” From that point on, our car ride was less than pleasant. I was driving (by Trevor’s choice), and yet he chose to be a backseat driver the whole way there. Then he kept trying to look up directions on his phone instead of on the paper they actually gave us with directions, so we missed our turn off of the exit. Of course, according to him, I was the one at fault, but I am pretty sure that’s how marriage works (aka blame the other person!). By the time we got there, we were 20 minutes late and dangerously close to killing each other. Luckily, we got over it and still love each other, and we were able to keep our appointment!
The doctor was really nice and very knowledgeable. We were with her for about an hour. She evaluated Knox by watching him, asking us questions and asking him to do certain things. She was happy with how he was able to draw the things she drew, how smart he was and how affectionate. She pointed out some things that aren’t “normal” and need to be worked on. After the evaluation, she confirmed his original diagnosis, saying that he was more mild on the scale and that even though she hadn’t done cognitive testing, he appears to be high-functioning. She said that some people may think he had PDD just looking at him, but diagnostically, he does meet full criteria for Autism. She told us that he may end up being one of those kids you see in a few years and never know that anything was wrong… that would be nice!
I asked her about the soy allergy, and she said that while there aren’t any links to allergies and Autism, if a child is allergic to something, it can affect their behavior. She likened it to pumping someone who is lactose intolerant full of milk then sending them to work. Obviously, they wouldn’t be able to perform at their best if they were uncomfortable and reacting to the dairy. So, we are going to schedule Knox for allergy testing. If I had to guess, I’d say he is probably just like Trevor and allergic to everything outside, which is so sad because he loves to be outside so he’ll end up with allergy shots.
The doctor wants to see us back in a year to check up on Knox, and she praised us for doing everything “right.” ABA therapy is what is proven to work for kids with Autism, so that was her  biggest recommendation. Quite frankly, I don’t understand some parents. All of these doctors and specialists act so impressed that we have Knox in speech, intervention and therapy already. How could we not?? Knowing what we know, it would be irresponsible and selfish of us to keep him away from what he needs. I understand not liking a diagnosis. Believe me, I get it. However, withholding service from your child because you don’t want to believe their diagnosis? That is ridiculous. It makes me angry how many parents choose to ignore their children’s symptoms for so long when early intervention is SO important!! If you see things that are concerning, bring them up to your pediatrician and PUSH for an evaluation. Because if you’re right, you can help them early and give them a much better shot at a normal adult life. If you wait so that they can have a “normal” childhood, you may be crippling them in the long run. It’s hard, don’t mistake it- it sucks to have to schedule dozens of appointments a month for your two year-old when you wish they could just be playing outside like a regular little boy, but it’s what is BEST FOR HIM. That’s why we do it. Not because it’s fun for us because, obviously, it is not.
Speaking of more appointments, I also met with the school district this week about Knox’s transition into their services. When he turns three, BabyNet will no longer provide service for him and the district will take over. We’ll have an evaluation in the coming weeks, and when he turns three, he will start preschool at a local elementary school. Depending on what they think his needs are, he’ll be placed into an appropriate class for the level of assistance and instruction he needs. It will likely be four half days a week. That will be really nice for him to get that social interaction, as well as some therapies he needs outside of the house.
Knox has randomly started talking like crazy over the past two weeks. He is repeating EVERYTHING we say, and it is just awesome! I don’t know if it’s just “clicking” for him all of a sudden or what happened, but we welcome the flood of words that is coming out of him. Trevor especially likes to hear him say “Lotion” because he says it “boh-shin” which sounds a lot like something else… men and their sense of humor! I’m so glad that Knox is making progress. He is such an amazing little boy, and we are thrilled that his hard work is paying off!
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{ 14 comments… read them below or add one }
Amen and hallelujah to what you said about parents not doing all they can to help their kids with early intervention. I worked at a pre-school for 6 years and had SO many kids with autism/other delays and the parents were in denial about it. And what do you know? A few years later I would hear through the grapevine that they’re kid is now in tons of therapy when they could’ve been helping all along. So props to you and Trevor for taking action! Knox is such a sweet boy and is blessed to have ya’ll as parents!
Great news!!!!!
Props to you and and your family for taking a step ahead and being so proactive with this, I know exactly what you are talking about other parents not being like this, but in the one run its only worse for them and their kids!!
Glad you got some well-defined answers and enjoyed speaking to that pleasant doctor! Hopefully you’ll get some more much-needed answers with the allergy testing. I will say that allergy shots don’t start until age 5. Fortunately, I am FINALLY at the point of having to take my 5 year old only once a month as opposed to 2x a WEEK like I was having to do for MONTHS. That was exhausting and I’m not even the one being injected with what I’m allergic to on a weekly basis! lol
Hi Jessica! I’ve been reading your blog for a while now – never commented but wanted to let you know you guys are most definitely doing the right thing! My 4yr old is in Speech Therapy as well. He was only saying MAYBE 5-10 words at 3yrs old and I knew that wasn’t right so I asked for a referral to a speech therapist – got him into private speech therapy and then when the school year started they accepted him in to preschool since he has an IEP even though he was only 3. I’m SO THANKFUL that we did this – he is now in his 2nd yr of preschool and is doing so much better.. he now is working on letter pronunciation of his F’s and V’s. Just like you said – how can these parents ignore this.. my in-laws said he didn’t need speech therapy that he was just a late talker.. glad I didn’t listen to him b/c he was diagnosed with “expressive speech delay” – but of course now they want to say how well he’s doing.. makes me mad! Baran (my son) is also lactose intolerant and drinks soy so I love reading your blog b/c it’s like I have someone to connect to about allergies and speech delay, etc.. I know this is a long comment sorry!!!
Yavonne, I like long comments! Good for you for advocating for your son! So many people mean well when they say these things (like them being late talkers), but it is so important to bring your concerns to a professional! I’m glad he is doing well and getting speech! I hear you on the food allergies- adding one more thing to stress over!
Hi Jessica,
I am a mom to a two year old and I was just curious the first signs you noticed with Knox that raised concern? Just want to know some red flags for you:)
Chelsea, for Knox is was lack of eye contact, not responding to his name and the lack of speech. It’s different for everyone, but go with your gut- if it feels wrong, it is always worth mentioning to your kid’s doctor!
I love your blog! It’s been fun keeping up with you over the years. I don’t comment but want to let you know that I think it’s great what your doing for your boy. Also I will say a prayer this week for you and your hubby. These things are not easy, but nothing good ever is! Bless you!
Thank you so much, Michelle!
My son has a severe speech delay. He’s almost 6, but his expressive level is around 3. Everything else functions at or above his age level, including his receptive speech. He has 3 days of therapy in school (which I had to fight for), plus 2 days of therapy in free clinics. And I am often praised for taking him to therapy, fighting for more services and doing his homework. It seems like a no brainer to me. It sounds like you have a great transition plan for him aging out of EI. I recommend also pursuing free or low cost clinics in your area, if there are any. We didn’t do this at first, these clinics were sort of our plan b or even c. But everything else fell through, and the waiting list for the clinics was at least 6 months. So I would pursue that, if possible. I don’t think you can ever do too much intervention, IMO.
Thanks, Tracy! Luckily, they have just changed the laws in SC that allow children currently receiving treatment under BabyNet to immediately transition to what is called the “PDD Waiver.” This program will also cover his therapies. I am so glad they made that change because what a travesty to interrupt treatment for the sake of a waiting list!
Thankful I found your blog. My almost 2 year old does not have to much to say and I am thinking about a Speech Therapist. He did not qualify for EI Services.
Jennifer, definitely pursue it! That’s something you’ll never be sorry that you did!