We took a family walk after dinner. Alden lit our way through the twilight with his flashlight. Occassionally I would feel a stab of anxiety and think, “What is that?”
“He exhibited minimal eye contact and did not consistently respond to his name.”
Our neighbor has a new puppy. She was kind enough to suggest we’d be doing the puppy a favor if we let her meet the boys. Delight all around.
“Elliot frequently did not respond.”
Back at home we watched Little Einsteins and raced toy cars. The boys laughed and laughed. So did I, except for when my stomach would suddenly drop a little bit.
“Results of the REEL indicated receptive language at the 2nd percentile with a descriptive rating of poor and expressive language below the 1st percentile with a descriptive rating of very poor.”
Damon and Elliot were just getting started on building a train track when I took Alden down for bed.
“In the initial session, he frequently said ‘look’ but without meaningful intent. He also said ‘ba’ for ball… No other vocalizations or verbalizations were noted during the session.”
Looking back on our walk I realize that Elliot did not make a single sound the whole time.
I dreamed last night that I was watching my boys from the top of a high hill. They ran into the street and I was yelling for someone to get them. No one did, but they still crossed safely to the other side.
jaysaint 
Posted by SScarbrough on April 6, 2011 at 10:12 am
Oh, Jillian. You and your baby are in my thoughts.
Posted by jaysaint on April 6, 2011 at 12:07 pm
Thank you, thank you.
Posted by Jeannie on April 6, 2011 at 11:34 am
Big hug for you. Whatever is going on, you will figure it out and your beautiful boy will be okay.
Posted by jaysaint on April 6, 2011 at 12:07 pm
Thank you. I know you’re right, and I appreciate the vote of confidence!
Posted by Leanne on April 6, 2011 at 7:24 pm
Your strength and love have more power than you know. He will get across that street just fine.
Posted by jaysaint on April 6, 2011 at 8:18 pm
Thank you.
Posted by Ryan J. Lucas on April 7, 2011 at 8:50 am
Parenting is the most expensive roller coaster I know.
When Elliot takes the car out for the first time, you’ll laugh at your worries you had way back then.
Posted by jaysaint on April 7, 2011 at 5:35 pm
I look forward to that day! Or at least I think I do right now.
Posted by Sarah on April 7, 2011 at 9:08 am
I know that this is all gonna turn out fine in the end and we’ll laugh and laugh about those silly old scary times when E wins some major prize for his research in, like, neouropsych andlinguistics or some other field that requires him to demonstrate his mastery of multisyllabic words, complex syntax, and knowledge of the objects of his verbs.
That, or when he turns out to be just as normal and fine and middling as the rest of us, after some amount of intervention, large or small. (And don’t we all need some amount of intervention?)
But I’m sure that’s cold comfort now.
So for now I’ll just say I’m sorry y’all are suffering. I wish I could make it stop. I’m here for whatever y’all need that is within my power to do (and glad to try to stretch that too). And I can’t wait to see you — to see all of you but especially you — very very soon, when I can listen to as much or as not-at-all as you want to tell more about this.
Posted by jaysaint on April 7, 2011 at 5:37 pm
You’re wonderful, and it is real comfort right now. Thank you.
I think maybe Elliot is exhibiting an early brilliance in extreme efficiency. He will pioneer energy-saving technologies based on his ability to fully function with only two words (and one of them only in sign language).
Posted by Sarah on April 7, 2011 at 8:00 pm
Excellent point. Really, he’s light years ahead of the rest of us. Except me. I’m told that lacking permanent Maxillary lateral incisors is the wave of the future.
Posted by Stacey on April 7, 2011 at 8:48 pm
What Sarah said….and hugs.
Posted by Mothering = Worrying | mamapundit on April 8, 2011 at 8:26 pm
[…] friend J (whose blog you should be reading all the dang time anyway) is very bravely and beautifully writing about her own (ADORABLE) little E’s new involvement with early intervention services. […]
Posted by Stephanie on April 8, 2011 at 9:23 pm
I found my way over here through Katie @ mamapundit. For a moment it was as though you were quoting snippets from my 21 month old son Aiden’s evaluation. I too sit through his speech and special service therapy constantly thinking how very different he is. Everyone says he will catch up but there is just that feeling. I know he’s not where he should be, not doing things kids his age are. I know he’s in there though-I can feel and see him thinking – and what a happy little boy he is. Please post more, it’s nice to know we are not alone. And good luck. We may learn from our boys than we realize…
Posted by jaysaint on April 9, 2011 at 10:33 am
You’re so smart to trust your mother’s instinct.
Thank you for your comment. Our sons are most definitely our teachers.
Posted by Kim on April 8, 2011 at 9:24 pm
I work in early intervention and I am hoping, hoping, hoping that evaluation report talked about all the wonderful things he IS doing, too! It makes me so sad when a report is a laundry list of concerns, but hardly anything written about all the skills the child DOES have and that you can build on. 😦 The reports should be weighted towards the positive, while containing enough info. to qualify a child for services, too, if they are needed.
Posted by jaysaint on April 9, 2011 at 10:42 am
Thank you, Kim. There was none of that, but your comment makes me feel better about wishing it had been there.
Posted by Maggie on April 8, 2011 at 9:28 pm
I am an Early Intervention teacher in MN – directed to this blog post from a different blog. I enjoy reading your perspective and having additional insight to what parents are thinking/feeling during this process. From the little I saw on your blog about the evaluation and process, your son seems to be doing great. And 16 months is early to get involved in communication intervention. From your little video I can see that your son has great social interaction and as you’ve mentioned that you’ve heard from others – kids can have early communication delays and then by the time they hit school age you can’t pick them out of a crowd.
Posted by jaysaint on April 9, 2011 at 10:43 am
Thank you! I so appreciate your perspective.
Posted by Lili on April 8, 2011 at 10:25 pm
Oh Jillian, I’m so sorry for all the worry you’re feeling right now. I don’t think there’s a day I haven’t worried for the past four years. Waiting to hear that E didn’t have cystic fibrosis nearly killed me. I would press my head to his tiny chest listening for a sign of a rattle. When F wasn’t walking at 15 months, I comforted myself “adjusting” her age down two months long past the time period when they had caught up to other kids their age. I know that you all will make it through this to a very happy future. Sometimes one day at a time seems too damn slow, though. Lots of hugs.
Posted by jaysaint on April 9, 2011 at 10:49 am
I remember those days. And now they’re both going gangbusters.
Alden didn’t walk until 15 months and he had nothing like F’s excuse.
Posted by Debbie on April 9, 2011 at 8:51 am
Hang in there. I am the mother of a child who did not speak at 16 months, had many signs of serious developmental delays at an early age. Eventually, with good services and a lot of time, and a lot of worrying, she did turn the corner. But not until she was 4 1/2. So three years of uncertainty and difficult communication with a small child. And then it was another two years of daily therapy through the school district. My comment to you is don’t focus too much on a specific diagnosis as long as your child is getting as many services as is helping. A more general diagnosis of developmental delay allows a lot of leeway in what therapies are covered by the state. Too pointed of a diagnosis narrows the options. Today my daughter is a fifth grader in the gifted program at school and getting straight As. Her communication skills are greatly aided by being able to read. Visual reinforcement of information is crucial for her. I am still, however, dealing with the school’s perspective of her as a special needs child, which is not always helpful. It is a long road.
Posted by jaysaint on April 9, 2011 at 10:50 am
That’s a great bit of information for me to have while we’re still at the beginning of this process. Thank you. So glad to hear how well your daughter is doing.
Posted by Kayt on April 9, 2011 at 9:35 am
Here via mamapundit. I usually don’t go creeping, but I saw that your boy was starting S:T, and wanted to offer up some words of encouragement.
My son turned two in December, and he had no words at his 15 or 18 month checkups. Our ped kind of shrugged his shoulders and told us that boys start talking later than girls. I didn’t like the fact that James didn’t make eye contact, didn’t babble, and didn’t like to be touched, so I contacted our Child Find coordinator at our local school district. They told us James was smart, sweet, and very ahead on his motor skills. Oh! and he was in the first percentile for his age in speech, and they were concerned about autism. So, we left his eval, and I cried.
We started therapy in September, when he was 20 months old. In these last six months, there has been so many changes. At first, it doesn’t seem like they’re actually doing anything helpful, but all of the sudden, your baby says something. Like “bubble”. And you cry and you email the video to every single person you can think of. Your therapist becomes your friend, and then your boy starts using WORDS and making eye contact, it’s all worth it. And James just started calling me ‘mama’ this week, and he’s been saying ‘dada’ and ‘papa’ for the last six months.
I’m sorry to write a novel in your comments, especially when you don’t know me, but long story short, it’s going to be hard at first, but SLT is so rewarding and helpful, and you won’t believe the changes you’re going to see in Elliot.
Posted by jaysaint on April 9, 2011 at 10:52 am
It does me a lot of good to read this, thank you. I have had that thought of, “It sure looks like they’re just playing with him.” But if they can get him to bust out a “Mama” I will be theirs for the asking.
Posted by Kayt on April 9, 2011 at 9:47 pm
I think one of the best things we’ve learned from therapy is how to incorporate language learning into every day activities. I thought we were giving him enough input during the day, but we learned what type of input was more effective for him. And having someone else come in and encourage him helped too. And yes, the first time he called me Mama, I cried. And if he had followed that up with a request, he would have had it. Pony, car, butcher knife, you name it. 😉
Posted by It's My Thoughts on April 9, 2011 at 10:22 am
My nephew never started talking till he was well past 3. What was shocking was that the nursery never picked up on his stammer or lisp. The lips being a huge concern to his she took him to speech therapy.
What they pointed out was that the stammer was more worrying that the lisp because although a childs speech is still developing up till the age of 7. The lisp may never go but they could work on the stammer because that was more important.
There was a 12 week course they worked through and now he is nearly 9 there is no stammer and the lisp is there and we have a very happy little boy.
It was a simple process to slow him down when speaking with keeping a few rules in mind. It was so easy and simple and yet to all of us his problems seemed so huge.
So i wish you all the best and please don’t hesitate in seeking some good advice and help.
Posted by jaysaint on April 9, 2011 at 10:56 am
Thank you. So glad to hear your nephew is doing well. All I really want is to be able to say “very happy boy” about both of mine.
Posted by Pia on April 9, 2011 at 11:38 am
We started the evaluation process when J-man was 16 months old. He has been in some combination of ST/OT/EI services since then (4 yrs now), with a significant language imparement and ultimately a diagnosis of autism spectrum disorder. It is daunting, because at 16 months it can go any number of ways… from just a late talker (which does happen) to more significant issues. It is nearly impossible to stop the worry and being scared, so allow yourself some of those times… but don’t let it steal the joy of your child. Sooo easy to do… but worth the effort to avoid.
Also… never let others tell you that they know better than you about your child. It is so easy to give up power to the experts, but you have more knowledge about YOUR little guy than anyone, and your instincts DO matter. Take what works for you, and shelve the rest. (http://www.thecrackandthelight.com/2010/09/letter-to-myself-and-others-like-me.html)
Lastly, check out the book Play to Talk by Dr James MacDonald (available on Amazon). Written for parents, it has been the most wonderful thing for me and our family. We have seen the most success in helping our J-man learn to communicate using these simple techniques, and it is written for PARENTS, so it is easy to understand. It is meant for any child that is “late talker” regardless of the reason why.
All the best to you, and feel free to contact me anytime if you have questions about anything… it is a crazy time and it can be nice to have a network of people who have had similar situations.
Pia
Posted by Monika on April 9, 2011 at 4:39 pm
Sent via mamapundit.
I am in there with you, just as scared. But I have a 4 year old, who I have been trying to get help for over 2 years. We are in Europe, and they have a different system. We never received as precise a diagnosis as you did; all we were told is that he needs “intensive therapy”. He cannot communicate as well as other children his age, and I am afraid that he is starting to feel it. He has trouble organizing sounds in sentances; one-off sounds are no problem. Every few weeks or months, he develops a stammer. But finally, FINALLY, we have found a therapist to start working with him. He starts this Thursday.
Take heart that you have accessed early intervention; the earlier, the better.
Posted by Molly on April 9, 2011 at 6:59 pm
If you want to chat, PLEASE let me know! I have worked with kids with all sorts of special needs for the past five years, and the one thing I can tell you is that testing is a MOMENT in time. It is not indicative of Elliot’s sweetness, potential or your love for him.
The thing about speech issues… I’ve gotten to see the kids I work with over the past four to five years. Elliot has time on his side. You are getting him evaluated and you’ll see what they say and progress from there. I remember one little girl who was nonverbal at 5. Now at 9 she speaks, says hello, makes requests and lets her desires be known!
There’s another little boy who I have known since he was 6. When he was 6 he could speak, but did not initiate speech and didn’t respond past one or two word answers. The change I have seen is amazing. He got up at the talent show at camp and sang 8 Days a Week by The Beatles. He was the one who decided HE wanted to sing in it, he told us, and he did it. I cried. It was incredible, to see this child that once needed someone by his side the entire summer (he was a runner) four years older, initiating conversations, singing constantly, talking to other kids and all that stuff.
So I think what I’m trying to say is, he’s young and there’s no way to tell what he will be doing four or five years from now. So have hope. and go hug your sweet boy.
Posted by Yve on April 9, 2011 at 10:32 pm
Have seen this many times in psych, and am inclined to say that the emotions, pressure and anxiety for both parents and child are more significant and difficult to deal with than the delay itself.
I have dealt with many many parents, and have found the bravest ones are willing to put away their ‘dont mention it and he might come good’ to help their child get the help they need. You’re on the right track, and you sound like you love him so very much, and he will feel that even if he cant articulate it yet.
Best,
Yve
Posted by Rebecca on April 12, 2011 at 10:20 am
Jumped over from Mamapundit.
I have three boys, ages 16, 14 and 12, who have all been in speech therapy! Yes, it has been a journey and I strongly believe that early intervention is key. The goal is to maximize each childs potential! Every child (every human) is different and they arrive with various strengths and weaknesses. As other bloggers have mentioned it is important to focus on the positive.
When my 16 yr old was 18 months he could only say “dada” and “ball.” We started speech therapy at age 2. He tested well for receptive language as he could point to pictures and answer questions but could not verbablize. The only thing they could ever come up with was “motor planning.” He had some sensory issues and we did Occupational therapy. Overall he has done fine and they finally kicked him out of speech tx in eighth grade (he liked it.) He is quirky, but confident and seems happy.
Son #2 had some articulation difficulties that were remedied by speech tx. alone.
With my third son I saw similarities to the oldest and had him tested sooner and started speech and OT at 18 months. Although his hearing is fine, they initially thought he was almost deaf because he freaked and did not respond at all when they put the head phones on him. It can be very tricky to evaluate young kids. Fast forward to the present. He is in 6th grade, still in speech because of motor planning difficulties. The teachers say he is not afraid to answer or speak in class, has a lot of friends so is socially well adjusted. The one thing I have seen with my boys is that they both have poor handwriting – like speech it is a fine motor skill, and also they are terrible at spelling. It is difficult to sound out words when you can’t pronounce them. #3 seems to have more, and different sensory issues. Tactile things like stepping on sand bothered him when he was small and he wouldn’t wear underwear until age 11. I figured that was the least of my worries! The sensory integration issues are complex.
In summation, every child is different but they are all blessings and all have a special purpose. You are your child’s advocate, you know him best. With love, positive encouragement and intervention he will be the best he can be. Enjoy the journey.
Posted by Late Talker « jaysaint on November 7, 2011 at 9:50 pm
[…] six months ago, our speech therapist gave Elliot a hard-to-read evaluation. She tells me now that they felt fairly sure he was autistic, but wouldn’t have said that to […]