Hi everyone out there! I hope everyone is doing great. Just to fill you in on our family, we have 4 kiddos, 1 of them has CTD and Autism. We have had a rough go lately it seems with our son and his language. Our son Spiro has a huge vocabulary I would admit for someone presenting with CTD. We can talk to him. He can answer us. He comments on situations around him. It’s not always correct or sounds right but it’s there and we are happy with where he is at as far as speech goes.
As far as language goes… that’s a different story. Some people may think it’s the same thing but it’s not. Speech is articulation and learning to say words. Language is more sentence accumulation and acquiring words.
Spiro has had a regression of sorts with his language. He has developed something called perseverative speech. This is a neurological disorder where despite the circumstance the phrase is repeated. It is common in persons with brain injuries or diseases and autism as well. And that’s where we fit in. I’m not sure if other CTD kiddos have this problem… because I don’t know a lot of other CTD families. But Spiro has CTD and Autism and he presents with the repetitive sentence of ‘what are we doing now?’…
He says it at home approximately 500 times or more a day depending on our activities. It’s crazy. Despite our redirection, it just persists. Constantly. A non-stop question of ‘what are we doing now?’…
Even if he is doing something he says it.
I know parents of nonverbal kids are probably thinking… ‘I would do anything to hear my kiddo talk’. I get that. And I am so happy that my child speaks. I’m happy to hear ‘I see mommy now!’ Followed by a hug.
But what I grieve is hearing ‘what are we doing now?’… 500 times a day.
It tears my heart apart. My son is rarely content. Always wants to be doing something, but can’t do anything independently. He can’t play with toys or go play in the backyard. He won’t play and just repeats the same sentence over and over again in our home despite the activity. It is the most heart-wrenching thing for me to hear because I can’t make him happy. He is unsettled and not content. It’s a hard world for a mom to hear a question hundreds of times a day and to not be able to satisfy him with an appropriate answer.
But, all that being said… my husband has had a few talks with me about this. We aren’t the ones to be able to fix this. It’s an SLP or ABA issue. And for now, we have to tune it out. It’s hard to do, but that’s reality. And that’s super hard for me. I feel like I’m abandoning my child’s needs. I had to leave the house today. On my own to just wander around some stores to get a break, so I didn’t have to hear ‘what are we doing now?’ 300 times.
I need to take those breaks. And not feel bad when I tell my husband I need to leave the house for a bit. It doesn’t make me a bad parent. It acknowledges I’m human and still need to maintain my sanity to manage the life that I’ve been handed.
Hugs to any family dealing with this. Leave a comment on Facebook if you have experience with this issue. Thanks so much for reading!!