Preface: We're going through a rough time right now with Rory. I wanted to wait to publish this and another post I've been working on until we got a diagnoses. But it looks like that isn't even a possibility for at least 4 / 6 months. So here's what we've been going through.October 4th: Well we took Rory for his 18 month "Well Child Check". It didn't go as planned. He's the height of a 2 year old but the weight of a 1 year old (22.5 pounds). Tall and thin. No problem.
But his communication skills were discovered to be sub-par (both in verbal and comprehension abilities). He knows a few words but he should know 15-20. His problem solving skills are also below what they should be. (Charlie noticed these issues at his 12 month appointment but we were told to "Just give him time".)
I don't know what it is, but Rory is now in a struggle. Early intervention and detection is key, but I don't want to alarm anyone until we know what we're dealing with. This post is mostly for my piece of mind and something to confide in.
October 5th: We started the referral and insurance prior authorization process to get help from Early Intervention and a Speech Therapist. It can take up to 5 days alone to go through the insurance prior authorization.
October 6th: I called the doctor to see if we could throw in an audiologist appointment as well. Just to be sure there isn't something wrong with his hearing. Once I found out our insurance doesn't require a referral to see an audiologist I went ahead and scheduled an appointment on the 17th.
I feel like I should be moving mountains for him. Char reminds me these things take time and I'm doing the best I can for Rory. That's all we can do. Wait on the insurance so we can proceed on this new journey.
I tell myself we named him after the Rowan tree. A tree that thrives where other life struggles. A tree believed to guide weary travelers on their way. I must say I could use some guidance right now, along with answers on what's going on with my little boy.
October 7th: I went ahead and called Early Intervention services. They set up an appointment without the referral. They said they'll get it before the appointment, so why delay? Sadly, their soonest appointment isn't until November 4th. So the 4th it is. They will screen his gross and fine motor skills, problem solving abilities, his hearing, and his speech. The whole gambit. It'll be more in depth then the questionnaire at the pediatrician's office. If something's wrong they're bound to find it.
I just keep telling myself I'm doing the best I can as fast as humanly possible.
October 10th: Insurance approved Early Intervention screening for Rory. Char called the Early Intervention people and they suddenly had an opening for this Wednesday at 12:00 pm. (Apparently, Charlie is more terrifying then I am). Anastasia got her new helmet today.
October 11th: I am so nervous for tomorrow. I'm praying for a miracle and that some questions get answered. My biggest fear is that we'll just end up with more questions than we started out with. The main question being, what is this? What are we dealing with? Is it a simple speech delay, autism or something else?
October 12: Well, that went about how my friend, Valerie, and Char said it would.
The Early Intervention lady came at the same time as Anastasia's new physical therapist. Which made for a crazy time as 2 people were asking me questions about 2 different children. Luckily, Char was there with me and took point on Rory.
They checked both babies' vision for us. Unfortunately, the vision test showed that both of them need to see an eye doctor because they have vision problems. Which could explain some of Rory's issues.
We just filled out a more in depth questionnaire about Rory's habits, abilities, and behaviors. Then she scored it while we waited, just to give us a preview of what her report will be like (which she'll have done in a few weeks). The results were all in the black, which means he qualifies for Early Intervention, Speech therapy, occupational therapy and for further testing.
Next we see the audiologist to determine if he has any hearing impairments. We're also waiting to meet with the Mental Health Coordinator who can shed some light on what, if any, mental disabilities he could have (like autism or it's sister disorders).
The early intervention lady said that regardless of his diagnoses his treatment is the same. The goals maybe slightly different. But I need a name to what is plaguing my happy little boy. That's what seems to get most people, is he's so pleasant. Shouldn't he be upset and frustrated at this mad, confusing world he doesn't understand? Instead, he's just happily going along, perplexed, but in a good mood.
I worry that we won't find out what this is. I worry he won't have a normal life I looked forward to for him. Simple things like soccer games or swimming lessons in summer to Boy Scouts when he's older.
I fear that people will treat him as less than a person just because he's different or delayed. I fear that life will never be normal. I worry he'll fell like he's always trying to catch up to some ghost of himself.
I worry that people will say I'm a failure as a mom because he has speech delays or because we're now in Early Intervention therapies. But I read to him as much as possible, cuddled him as time allowed, spoke to him every moment I could. It's easy to ignore the truth, or to make excuses for him, it's hard to face the fact that life will never be the same as you thought it would be.
October 14: I got an eye appointment set up for the 25th for Rory. Now we'll see what's going on with his vision.
Today we had Rory's audiologist appointment. HAD is the key word. They called just as we loaded up the car to tell me their machine broke. She asked if Rory could point or raise his hand to indicate noise. I told her no he can't. She let out an Ooooo sound. Then put me on hold. She came back and said they were booked for the next few weeks BUT that the doctor decided to skip lunch on the 24th for Rory to have an appointment. The reason it isn't sooner is to make sure the machine they need is operational by then.
Yeah, they're squeezing us in as soon as possible. Which is super kind of them. It's just I wanted to know today what, (if any) hearing issues he has. I just hate having to wait another week in uncertainty. At least he's a happy child.
He did do an odd thing this evening. Anastasia and Rory were both crying and wanted to be held by me. I picked up Anastasia to comfort her, which frustrated Rory, who rarely gets upset like that. Then he started spinning in circles. He wasn't smiling either, the way most children spin and giggle. No, he just went in circles until I put Anastasia down and picked him up.
October 18: I just watched a friend's video of her boy who's 8 weeks older than Rory. He could say I love you to his mommy. I want that so badly. I cried as I watched the sweet nightly interaction between mother and baby son. I felt envious of her. She gets to hear those many words from her boy. Meanwhile, I don't know when or if I'll hear those from my only son. Oh, I wouldn't wish this fate upon anyone! I need a Kleenex.
October 19: Today 2 ladies from the Early Intervention came to do a further assessment of Rory, at the same time as Anastasia's physical therapist. Which meant there were 5 adults discussing the 2 children.
Char answered 1 women's questionnaire which was assessing his fine and gross motor skills, watched how Rory played and interacted with us. Meanwhile I took point with the other lady discussing Rory's daily routine, ways he reacts if we deviate from it, how he acts around other people or the world at large.
After an hour of the 2 of us answering their questions is draining. It's disheartening to answer no to so many of their questions. It just makes me realize how far behind he is or just how much he lives in his own world.
Today I had to admit that my little handsome boy has never given me a kiss, a squeeze, nor a hug. Sometimes he tolerates me hugging and kissing him, but never reciprocates.
I hated bringing up his "Lost words". Words he could say around 12 / 14 months that are just lost to him. Words like "ball", "momma", or even "shut up" (which would be told to the dog when she barked to much). With him you never know what word will go away next. If it's the last time you'll hear his little voice say a certain word. It's heart-wrenching. At an age when most toddlers are learning to say a new word a week or understanding a new word a day, he's stagnate. My friend Val recommended a book called "Let Me Hear Your Voice" about a mother with 2 autistic children. It's how I feel, just let me hear him speak real words.
Now I wait for another week to bring me closer to an answer. Next week we have a hearing appointment, the next day an eye exam, then the report from the Early Intervention gals on what they can do for Rory and what steps we need to take next.
This is such a lonely path. We informed Heidi tonight that, while we don't know what Rory suffers from, he's different. She cried and cried. She just wants her baby brother to be healthy and happy.
I dread having to tell others about his delays. I don't want my boy to be treated unfairly or like he's an idiot. I want him accepted for who he is, regardless of what the testing reveals. In a perfect world, people would try to understand what his worldview is, and adapt to him. Instead, we have to somehow bring him out into the great unknown.
When people say they just want their child to be happy, it's a lie. They want them; "normal", healthy, and happy.
October 22: Today had some ups and downs. We went on a family adventure to a pumpkin patch and hay maze. Towards the end we noticed he started to stress out. He did the hand flapping thing and added a new behavior. He'd open up his mouth in a O shape, it looked like a silent scream now that I think about it. But he was good apart from that.
He discovered these toy dump trucks and became fixated on them. He also cleared off a pumpkin display table because Nothing can be on a table.
Then he had a melt down when Char put a mask on. He loves his daddy so much. He says Bye Bye only to Daddy. After Char left for work Rory began spinning in circles. I'm starting to think it's a sign that he doesn't feel in control and can't quite handle it.
Heidi Anne wants to become a doctor to find a cure for autism. That or a vet, she's a sweet girl.
October 23: Tonight I told Heidi she could ask any questions or fears about Rory, with no worries of coming across as rude. And I'd answer to the best of my abilities. She wanted to know how Rory views the world? What is his life like? It turned into the follow conversation:
Heidi, you know some Spanish words right?
You know how grandma speaks in Spanish sometimes?
Yeah, it's really hard to understand her, I can pick out a few words, but I don't know what she's really saying.
That's how Rory views the world. It's like he's living in a different country. He understands some of what we're saying but not everything. He knows a few words but not enough to tell us what he needs, wants, or is thinking.
Why doesn't he hug me?
You're learning about different cultures in school, right?
Well, he has his own culture. In his culture people don't hug or give kisses.
So he doesn't love me? (With eyes filling up with tears). But I love him so much! He's my only brother!
He shows he loves you in other ways. In his culture people don't really touch. But he'll cuddle up next to you. Or sit on your lap. That's his way of saying I love you. He's going to learn with Early Intervention and Speech therapy ways to interact with our culture. At the same time, we need to understand more about his culture. What he likes, hates, how he wants people to act around him. It's just going to take time.
So now when she goes for a hug and he doesn't hug her back she says "Oh, right. Different culture." Also, when he cuddles up next to her to watch her play a game she happily states "Mom! He's saying "I love you" to me! I'm in his country right now!" Or if she gets frustrated with him I remind her "He's in a different country" or "Different culture".
It's got to be hard on her, just as it is for me when we see other kids his age doing "average" things. But we're getting there.
October 24: Rory's hearing appointment was today at noon. It was a long car ride down to Ogden, raining off and on all the way. We arrived the customary 15 minutes early, but since we were a fit in appointment, we didn't get seen until 12:30 pm. Rory kept busy by playing with a toy truck while we waiting.
The doctor asked some questions about why we needed an hearing appointment so young. Not in a mean way, just trying to understand if this was an appointment to rule out a hearing disorder for something like autism or if there were concerns about him being hearing impaired. I told him it was a little bit of both.
He waited until Rory got okay with him even in the room before he did any testing. Which was nice because Rory was spinning in circles doing his stressed out thing when we first came to the patients' room.
The doctor performed an ear drum test. It tested to see if there was fluid build up in Rory's ears. He passed that test. Meaning he's got a clear and functioning ear drum.
The next test was more of a struggle. I had to hold Rory down for nearly a minute per ear so he'd be perfectly still. He had to be perfectly still for this test, which just indicated wither or not he had perfect hearing. It was a pass / fail test. He failed it. The doctor said something as simple as his ears not adjusting to the change in altitude could cause a "fail".
IF Rory could point to his ears, nose, mouth (point to anything), then the doctor would administer a last hearing test. Do you remember them from school. (Right, blog? Back in elementary school? Where you'd sit with those 70's / 80's fantastic huge headphones. Then raise your hand on the side of the ear you heard the various "beep" sounds.) But Rory can't do that. So now he needs a special test done only at, you guessed it, Primary Children's. Man you're on a roll today!
The doctor heard Rory's babbling and told me some of his observations as to why we'll find out his hearing is perfect or near perfect:
1. Rory babbles and "talks" in a normal tone of voice. IF he were hearing impaired he'd speak much louder. Loud enough so he could hear himself speak.
2. The words he does say sound fairly accurate. IF he couldn't hear well, the words would come out as Rory hears them. Also, he'd probably speak more words than he does.
3. He never picked up sign language. Which means he's not connecting with us. Even hearing impaired and deaf children pick up on sign language. But autistic children tend not to.
Now we wait for a new referral to get a new appointment with a new doctor at Primary Children's. I'm hoping to get into see them by the end of the year. Fingers crossed!!
October 25: We had his eye appointment today. It was a difficult appointment. Not only did Rory struggle though out it, but it removed any doubts I had that this isn't autism.
First a MA came and tried to do some basic eye tests. Like use a flashlight across his eyes. Or cover one eye to see the other eye. He didn't like it very much, Char had to hold him down. Then she tired to put special glasses on him and have him point to pictures. We told her he wasn't able to do that. After which she left the room.
A while after she left, the doctor's assistant came into the room. He performed more tests on Rory, which took both Char and me to hold him still so the assistant could complete his tasks. Next, he dilated Rory's eyes, which almost made him cry. Then we had to wait 20 minutes for the eyes to dilate for the doctor to do his examination.
I went into the kids waiting room and brought back a toy dump truck and a puzzle box. He'd take the little puzzle pieces, put them in the dump truck and dump them out. Or put them back in the puzzle box. He's also play with the truck wheels. It kept him entertained while we waited for the doctor.
Finally, the doctor came in. This time I held Rory down, while a nurse and Char helped keep him still. Again, this doctor looked at his eyes. (What do you expect from an ophthalmologist office?).
He finally came to a conclusion. Rory has a barely detectable right lazy eye. They only caught it because three people examined his eyes. Apart from that he has perfect vision. (The doctor also called him a very handsome boy). So the plan is to get him glasses in January, which should help align his eye within 3 months. IF that fails then we'll use an eye patch for a few months.
But the overall conciseness is his inability to look at us or point to things is a "behavioral issue" (AKA Autism). I'm sad because this was the remaining non-autistic problem there could have been. On the way home I made the statement out loud that my boy has autism. That is the remaining option.
October 26- Today we got the official report and what type of therapy he'll be getting for at least the next 4-6 months.
He'll be getting "Language Therapy" which is different then speech therapy. According to the language therapist, a speech therapist fixes incorrect speech and patterns. A language therapist just teaches you the words. So speech therapy could still be in the cards.
He'll also be receiving Occupational Therapy, to help with his fine motor skills.
His goals for the next 6 months are:
- To learn 10 new "functional" words. (Words like; up, cup, food. Words that serve a purpose in every day life. So 1.6 words per month.)
- To learn the word and meaning of "No" without the angry tone.
- To be able to drink sitting up
- To be able to use a spoon and fork properly.
We also got his skills results back as well, it gave an age equivalent, too:
Cognitive: 11 Months
Adaptive: 12 Months
Gross Motor: 15 Months
Fine Motor: 14 Months
Social Skills: 13 Months
Personal Skills: 8 Months
We called around and discovered that psychologist won't see Rory until he's age 2. That's when they no longer "grow out of it", before then I guess there's hope? They said call back in a few months to set up the appointment. Which bites because I want to know now what's going on. I also want to get him into ABA Therapy but they won't accept you until you have an official diagnosis. Now we're just in a holding pattern.