Lately, I've been struggling with Down syndrome. At 2 1/2, Eon has rockin' gross motor skills and does pretty well with self-feeding and other fine motor tasks. Speech, however, is a whole 'nother ball of wax.
He used to have words. Up to fifteen, in fact. I don't know where they go, but they're gone. We no longer hear, "gallup, gallup, gallup" when he wants up or "goggie" when he sees the family pet. We don't hear "ook" when he wants to be read to. Those words are just gone and they've not been replaced. He continues to sign and adds to his signing vocabulary almost daily, but he doesn't attempt to speak. He seems lost when asked to imitate sounds or words, too. It breaks my heart. There are so many choices and ideas when it comes to speech. So many things to try and so little time. I don't know where to put our focus because no one has done any research into best speech practices for our kids. What if we waste our time pursuing something that won't help and ignore something that will? I'm looking into prompt therapy, sight reading, augmentative communication, or stopping signing altogether in hopes it will encourage spoken words.
What he does do when he's excited, frustrated, bored, hungry, feeling left out, or any other emotion is yell, "MOOOOOOOOW!" often repeatedly. Shushing him doesn't help. Whispering back doesn't make him stop. Telling him a firm, "NO" doesn't work, either. Honestly, it sounds a lot like a large, distressed cow. And it makes me cringe. He sounds very much like a person with special needs.
My reaction reveals a lot about me. It uncovers a boat load of pride and prejudice which have nothing to do with the classic novel. I'm embarrassed that my son makes noises that draw attention to him and the rest of us. I'm ashamed that I'm embarrassed. I'm frustrated because I don't know how to make him stop. I'm mortified that it reveals a prejudice about me. Why is it so important to me that he sound "normal"? Why do the looks of pity or irritation that we receive bother me so much? How can I expect other people to accept him, when I'm struggling to accept him, myself?
And then it occurs to me. I have had the occasion to parent a 2 year-old five other times. They have all been really good at being two. I have not enjoyed my outings with them. Their behavior was obnoxious and often mortifying. They were unpredictable and made me question my parenting skills. They caused people to stare with their tantrums. I received looks of pity and irritation. I was embarrassed.
Why should my experience with Eon be any different? Have I bought into the myth that people with Down syndrome are all "so happy"? Or did he just spoil me by being such a good baby? Why do I insist on making everything about Down syndrome?
Maybe, Eon's just 2...and he's really, really good at it.
I just love your posts because they are so honest. hugs to you, friend!
ReplyDeleteGreat post! Sounds like being 2 is the same as his sibs. More alike than different I am afraid. LOL
ReplyDeleteWell, Pudge is our speech pickle as well. And, for what it's worth, the more people I talk to, the more I'm figuring that kiddos with Down syndrome tend toward being pretty apraxic in their acquisition of speech. I think many SLP's are reluctant to diagnose apraxia as a secondary diagnosis along with Down syndrome, but whether or not they ultimately do...if it quacks like a duck...or suddenly STOPS quacking like a duck...we should probably call it an apraxic duck. :0)
ReplyDeleteIt is pretty common for kids with diagnosed speech apraxia to "lose" words you thought they had for good. (Or so my obsessive reading in the name of finding some reassurance that my 3 year old will one day say something other than "yeah" tells me).
I'm right there with you. Something tells me Eon knows that charisma and charm can pretty much take him as far as he wants to go right now. Let those other kids who are far less gifted in those departments worry about speech development. It's so beneath him. :0)xoxox You'll let me know if you stumble upon a magic wand though, won't you? I'd like to thump Pudge with it a few times.
oh I SOOOO get it. My husband says the same thing about our little one."Shes just acting like a typical 2 or 3 year old." Even tho she will be 6 in Nov. She is soooooo delayed even compared to others with Down Syndrome.(from basically being blind, hard of hearing, and not having a family to dote on her.) I am so thankful youve given him signs to communicate with, I wonder how big his vocab is and if there are things he cant express with sign that cause frustration? I have an aunt that keeps telling me how defiant little ones with DS can be, lets just say that is as frustrating as the comments about them being so friendly. Im thinking that the last thing we need is another label, I love to just think of it like you are. Sometimes we all have bad days, things that frustrate us, or just act like a two year old- especially if we are 2!!!!! hugs.
ReplyDeleteI so hear ya Tara!!! My little one has only ONE word - HI. So Eon had a lot more. We are pretty sure she has apraxia. The losing of words of a classic sign of apraxia. It stinks, but I've pretty much accepted it. I would also get his hearing checked ASAP. The MOOOOW thing I would try to re-direct with a song. Does he have a favorite song that he can join you in with signing - like itsey-bitsy or twinkle-twinkle? The MOOOW thing sounds like an auditory stim which you want to redirect as much as you can to eliminate it. You (or someone) will probably have to be "on him" a lot to extinguish it.
ReplyDeleteHang in there and I totally get what you mean about being ashamed to be embarrassed. We don't want our kids to stand out more than they already do. I so get that!! HUGS mama!
Yep, Emily is pretty good at being 2 as well! I read Courtney's comment above and I have heard the same thing about kids with DS and apraxia, hopefully your speech therapist has some ideas on this one. Emily's speech is progressing nicely, but her gross motor skills leave a lot to be desired...wish we lived closer so we could get the two of them together so Eon could show Emily how to "move" and she could show him how to "speak" :-)
ReplyDeleteKelli @ livinglifewithes
Yep! I'm pretty sure we have an apraxic duck. LOL! And I think the yelling is just his way of communicating that gets attention the fastest. He doesn't have to think/remember which sign or sound is appropriate...if he yells, "MOOOOOOW," someone will react. Sigh. Ahhhhh, the joys of toddlers.
ReplyDeleteI dont really know what to say...Other than THANK YOU for posting this! I have been struggling for about a week now and I almost feel ashamed to admit it out loud...Always nice to hear others have those feelings even if they are for the briefest moment...Makes me realize I am not alone or a horrible Mother...And perhaps Eon is just really, really good at being two :)
ReplyDeleteThanks again for sharing this Tara!
Lucas has started some not so great two year old behavior too. I said to my husband, "where did my sweet boy go?". But you know I said that about my daughter too. Ds or not, still a two year old.
ReplyDeleteAnd as far as speech goes, we struggle here too. Lucas finally said "ma ma" last week but hasn't associated it with me yet :(
Evan (4) seems to have a revolving door for his spoken words. Some new ones are added, but others leave. Signs tend to "stick" a little better. We have had some success with Kaufmann cards for speech apraxia. It was recommended we start with them around 3-4 years old. They are pricey, but our local Ds group helps out with the cost.
ReplyDeleteWhen I had the pleasure of hearing Libby Kumin speak, she shared that we shouldn't think of apraxia as a medical diagnosis but as a 'use this way of teaching speech' diagnosis (not her exact words) and that it is a great way to teach our kids speech. I've been slowing words and sounds down while speaking to my bear cub and also playing music on the slow music play (an iPod app) and she has started speaking her first words. It has also helped my three year old start putting all the syllables in her multi-syllabic words. Hope this helps with your speech issues.
ReplyDeleteI have zero advice on the speech front since that's my girl's biggest delay too but let us know how it goes - love to hear any tidbits. We need to be doing more, I just don't know WHAT to do (either).
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