Tuesday was Nathan’s last visit from his physical therapist. It was a bittersweet hour, as she’s been with us for two years and Nathan seems to like her – probably in part because of the fact that she would sometimes conduct her sessions outside in the yard. 🙂 Nathan is on target in terms of gross motor skills and state budgets are tight, so his PT services have been cut.
Although my first choice would have been for her to continue visiting us each month, I didn’t fight the change. I know he doesn’t really need PT, and he’s active and motivated enough to basically do his own therapy. We already have a relationship established with a private PT in the area because of Sarah Kate, so we’re in a good position. Dropping physical therapy was, in some ways, a relief.
And then there’s The Other Thing.
Sarah Kate has already demonstrated that even with gross motor issues, team sports are possible. Even if they weren’t, how many of us play team sports as adults? He can walk, climb, and do other things today that Sarah Kate didn’t master until she was school aged.
No, it’s not gross motor skills that worry me. It’s speech.
Nathan’s receptive speech is excellent. He understands what we’re telling him. I know he understands when I ask him if he wants to watch Sesame Street, because he points to the TV and smiles. I know he understands when I tell him it’s time to go get in the car, because he signs “car”, walks to the car and tries to open the door. He also often picks up on and responds to words in our conversations – signing “day” when he hears the word “Sunday” or signing “fish” when I offer Sarah Kate some Goldfish crackers.
He understands and actively communicates, but he doesn’t speak much.
Often, Mr. Andi and I surmise that he just doesn’t want to talk. He has a history of doing things only when he wants to, and then doing them well when he finally gets around to doing it. He knows a lot of signs – milk, more, ball, wind, day, please, thank you, outside, car, mama, daddy, diaper, banana, grapes, apple, bird, sleep, and others – but only speaks a few words (“dog” was one of his earliest words and remains his most used). I try not to worry, assuming that he’ll talk when he’s ready.
But I can’t help it.
Unfortunately, many people associate speech with intelligence. Individuals with cerebral palsy, in the days before technology could bridge the speech gap, were often assumed to be intellectually disabled because of their inability to speak, yet many of these individuals had above average intelligence. I know that if people can’t understand what Nathan is saying, they’ll make assumptions about him.
They’ll think that my son, who intentionally makes messes as a diversionary tactic so he can run off and get on my computer, is simple minded. They’ll think that my son, who knows the exact combination of buttons to press to get to the song he wants on his tractor toy, is stupid. They’ll think that my son, who flashes a winning smile in order to escape a scolding or attract attention from strangers, has limited situational awareness.
So I spend my days vacillating between my desire to just let him be who he is and pushing him to reach his maximum potential. And I wonder, in this war taking place inside my mind, which option will win out in the end. And I wonder which one should.
I have the same issue with Colton. He is 28 months old and the only words he says are mama, dada, pizza, and cat. He is just starting to pick up on more signs and make more vocal noises but not words yet. I know he understands what we are saying too, just like your son. He too is on target for PT. It is a hard situation because we want whats best for our kids and I try not to push either. I really want him to talk and I know he will in his own time, it is hard sometimes though. I know exactly what you mean when you say people will look at him as unintelligent becuase he doesn’t speak. I know that is not true I know he is smart and understands and I guess in the end thats all that matters. It is not what other people think or how they feel.
Thanks, Kristina, for helping me know I’m not alone! Nathan vocalizes well. Constantly. At a maddening rate. He is almost never quiet. 🙂 He even uses non-sign language gestures in his vocalizations. But he doesn’t speak much. It’s enough to make a mom nuts…
Andi, Nathan’s signing vocabulary sounds very good. His photos show me a little guy who is engaged in his environment and the person holding the camera. I really believe he’s going to develop language and be a clear speaker. If he had issues with language/communication, I believe you would know already. I do sympathize with the worry you’re feeling about how hard to push Nathan on speech.
Did your state provide speech therapy at home or is that something that comes in at elementary with an IEP? My brother needed the speech therapy but he and Nathan are not the same kid. So I really can’t make an effective comparison.
Yes, Janice, he does receive speech therapy through early intervention, and will (presumably) also receive it when he transitions to the school system in his preschool. And you are right, his language skills are strong – it’s his speech that is lacking.
Sounds like a normal 2 year old to me!! His speech is something HE can control. So he does, to the consternation of everyone around him. Just keep reminding him to use his words and give him a big squeeze from me! I love seeing his happy face in your pictures!!
A few years ago (Em was probably around four or five) she was barely verbal. And the verbal skills she DID have were unintelligible to 99% of people.
We had put a latch hook at the top of our kitchen door (to the outside) because she liked to just leave whenever she wanted. Our family room looked into the kitchen. One morning, she walked up to the door, reached up and couldn’t reach the hook.
She went to the other side of the kitchen, got her step stool and STILL couldn’t reach it. So she went in her art drawer, got out a ruler, stepped onto the stool and used the ruler to pop the hook out of the latch. She turned around, signed “I love you” and said something that resembled “bye!”
Her speech is better, but still lacking, especially when it comes to peer groups. But it’s coming along. She is making improvements. It does come, it just takes so much time. Until then, her actions and her advocates speak for her intelligence…until she can find the words herself!
Oh Andi, I hear you. Ellie is going to be 3yo in a few months. Her speech has really taken off. . . as in she went from silent to saying 5 words that are clear and understandable. She has a handful of signs that are really just very gross approximations of the actual sign and she makes sounds with certain food items. It is frustrating to say the least because she is smart and yet you know as well as I do that society often equates speech with intelligence. I am told that it [speech] will come over time. . .
The funny thing about Nathan is that he’s been making what they call “environmental noises” for a long time. Growling at the dog, a “smack” when he blows a kiss, etc.
I was going to write about this some time this week :-). Mason is three years old and has no words. They describe his speech delay as a severe motor speech delay meaning he understands way more than he says. I know my boy is smart and he understands everything we say to him but it is very frustrating because people do assume that he has low intellengence because he can’t speak. Some people even talk “baby talk” to him which drives me crazy. He has trouble with signing because he has poor motor planning skills but he can sign “more” and makes other needs known with sound and gestures. I just want people to understand that a person’s inability to speak does not equate to an inability to think.
Girls i know where you’re coming from. James is 16 and his speech is still bad. He has verbal dyspraxia. He can have simple conversations with you and understands more than he lets on – always has. He does what i call ‘gobbledy gook’. That is, he rambles on for long conversations like you or i on the phone but isn’t really speaking words. He latches onto phrases like ‘Excuse me!’ from Sheldon Cooper in the Big bang Theory. He is very good when it comes to doing and knowing about places and things that interest him – not academics. Do i want more – you bet i do however he will be what he is and hitting your head against a brick wall ( at times) is no fun for anyone! Try not to worry too much about the future. Whatever happens happens. Do your therapies but always remember to have fun and that they are your, baby or child first and just enjoy them. You all sound like such good mums as you are!
This is the thing though, on average, kids with Down syndrome begin speaking around age 4. it is an average, some before some a little after, but I know the average helped me a lot when I would begin to wonder if Nichole would ever talk. She talks quite a bit now, but her speech is still struggling, but she is 4, and I do see the speech beginning to emerge. Hang in there. believe me, speech is what I worry about most!
I am with Rosemary, I have a 9 year old son with down syndrome, we have a little boy who has less speech now than he did when he started school, it is very frustrating, we are all now thinking he is on the autism spectrum as well, signing hasn’t been overly successful with him as he tends to get a bit confused as to which sign goes where, but he fully understands what we say to him, and a lot of the time I tend to think he is just lazy. Just wondering if anybody has had success using the ipad with the different revelant apps to help with speech, I think that’s where we are heading next.
Sums up a lot of folks experience! I’m a big believer in opportunity, support and skills teaching in a balanced way and then when the door opens they can walk thru. I’ve noticed with Kayli that she learns in clumps. She stutters for a few months then smooths out at a new level. Fascinating isn’t it?
Hi Andi & Friends
My youngest son, Brennan, has Down Syndrome, and is now 16 years old. When he was young, speech was his biggest problem and continues to be a challenge.
A few things my wife and I did:
(1) Brennan loved milk so when he wanted milk he would just say “Muck” . I required him to say “I want milk Daddy please” every time. We practiced it for years and were very patient about it – this helped him learn sentences
(2) We had lots of kids with good speaking skills, over to our home continuously. Our home is a very open environment.
(3)Brennan also has two older brothers who spoke with him all the time.
(4)Brennan has been involved in nearly one dozen sports over the years and excels at many of them especially basketball, baseball and swimming. He is very involved in Special Olympics. This is where he meets most of his friends and learns language from the coaches and players.
(5) Brennan loves music and learned songs , especially watching youtube
Tonight, Brennan was in his high school concert, He sung Nella Fantasia along with the choir.
I was amazed that he learned to sing a song in Italian (very beautiful song). We are so proud of him. So hang in there, Nathan may someday be singing in a choir.
Best wishes,
Bill McCarthy
Hi- I’ve been stalking your blog for a while after New Zealand Down Syndrome Assn linked it via Facebook. Over many years I’ve observed and suggested to lots of parents, that kids with DS will almost always learn to walk, ride a bike swim etc, etc, yet right from the start we focus on these milestones (for all our kids) However, without heaps of targetted intervention speech is not so ‘guaranteed’. If he is using lots of signs, include and encourage signs for ALL the words, not just nouns & verbs. Look at this great website- http://www.down-syndrome.org/practice/171/
Also don’t worry that signing will prevent speech development ( something I have heard from SLTs at times) It’s a lot more effort to make signs than to say words and gradually kids with DS ‘replace’ their signs. My two special people who have DS are C who is 33 and speaks well (& is married and living almost independently) and R who is now 22 & has many extra complications related to DS and who, without the specialist Johansson Language programme would probably have no speech, but is able to make her needs, wants & feelings known and engage with other using verbal language. She lives a great life which currently includes a part-time job in a shop and a polytech Tertiary ed) course. I love your blog and your photos- Your kids are GORGEOUS- Cheers, Jane
I don’t know why people who have watched children develop seem to think that signing discourages speech – the words Nathan says well are also the ones he signed first. It was the signing that enabled us to know for sure what he was saying in the beginning, and he was ecstatic when we understood him (that’s why he says “dog” a million times a day – we recognized it and he likes that we are “talking to him” when we acknowledge it and say it back).
Don’t spend to much time worrying about speech. It will come. Emily Grace refused to talk other than a few words here and there and only when it was convienent for her until her was almost 4. She did sign, point, grunt and make her wishes known but she would not make sentences or use words. We started at 3 telling her she could not have something until she used the word and it was not easy, there were times when she would just walk away but slowly she got it. She is 6 now and at times I wonder why I wanted her to talk. Like this morning when I was trying to get dressed and get her dressed and she was talking so fast I couldn’t understand her. She is going to stay with grandparents today and tomorrow and she is so excited. Bottom line, it will happen and then you will ask yourself why you were rushing it.
I started reading your blog for one reason – that Nathan is the CUTEST darndest kid I’ve ever seen! I wouldn’t be too worried about his speech. I work with kids, and for a two year old boy his speech is not that delayed. There are lots of non downs kids still not speaking at his age, and the sign language is helping him communicate in the mean time. He’ll get there!