Any other MERLD or receptive language disorder parents here?

[fizgig]

We are in the middle of the gut wrenching process of figuring out exactly what is going on with out DS (33 months) and I am looking for other parents who have attachment parented kids with severe receptive language delays. 

After a long and confusing process (where even the experts were confounded) it looks very much like our DS has severe Mixed Expressive Receptive Language Disorder.  This is creating a fairly unusual set of symptoms and I am having a really hard time figuring out how to parent my little one.

MERLD means that he doesn't understand almost everything said to him.  This has caused him to lag behind with his expressive language as well as in other cognitive, social and behavioral ways (since so much learning is tied to language).  So DS has some spectrum like traits (low eye contact, won't respond to verbal commands, etc) but since he is not actually on the spectrum, a lot of strategies that work for kids on the spectrum don't help DS.  I've found other MERLD parents on the web and they have been a great resource but since most of them aren't AP I don't feel like I can talk about strategies nor can I really seek some commiseration when none of them are still nursing, cosleeping, etc.

Our biggest issue right now is discipline.  We are working like mad to increase his receptive and expressive skills and try to reward any attempt to verbalize something.  This makes it very hard to set boundaries and feel like we are constantly choosing between learning and good behavior.  For example, we go into our room for bedtime at night.  Often he won't want to go and has recently started standing by the door and saying "der" which is GREAT and we want to reward him.  So I jump up and open the door.  But now he is up until 10 or 11 testing his awesome new power.  This is becoming very hard on the rest of the family and DH and I are getting no time together any more which is straining our marriage.  So I feel like we are having to decide what is more important, encouraging talking, or him getting to bed at a reasonable time and DH and I getting some QT. 

I would love to talk to other parents of kids like mine :)

[EarthRootsStarSoul]

Go ahead and insist on bedtime.  Tomorrow is another day full of learning! 

[Emmeline II]

I'm not in this particular situation, but I wanted to say that you and your dh are the foundation of his family--you won't be as much help to your ds if you and your dh are completely emotionally/intellectually spent, so I'd try giving bedtime the priority right now.

Have you met with any STs or OTs? I know that your ds' particular situation is tricky, but we have had a great OT and ST come to our house to work with ds. As long as the T understands what is going on and is flexible, it could help to have someone else work on this with you--a good one with have a lot of ideas to try out. Another thing to consider is Melatonin; it seems to work better (time-release melatonin) for ds if he is laying down so we have a timed lamp in his room for reading at night--though your ds is younger, if you have something that will keep him laying down for 20-30 min it may give it time to kick in.

[ErinYay]

DD (25 months old) has expressive, not receptive issues, but we have some of the same problems. She just learned to say "stop" when she wants us to knock something off, and also is just starting to use "no" appropriately. She also has just started to really ask for things that she wants. It's hard to walk that fine line between rewarding and encouraging language and letting her eat chocolate and cookies all day long.

I do a lot of "yes, you want a cookie! Wonderful job using your words! It would be nice to have a cookie, wouldn't it? But let's go play trains now, okay?" (Dr. Greenspan's "Engaging Autism" talks a bit about not just saying "no" to stuff, and kind of talking through it- they're gonna throw a fit when they can't have a cookie, so you might as well reward their words and engage with them a bit first. Also, sometimes if you talk enough in between the praise and the "no, we're not going to open the door anymore" they don't meltdown as much as they would if you just said, "no more door" at the outset.)

[FarmerBeth]

My youngest is older than a lot of the posters, here, at age 7, with and expressive language disorder.  I do get what the OP is saying about choosing between good behavior and learning.  The short answer for us is that we still stick to the rules, but we have lenience for differences in capability to follow them.  Right now, we're dealing with trying to teach not to interrupt and not to noisily talk or sing when people are occupied.  There's also the conflicting emotion of being ecstatic that he has enough words to do so.  He's really only been speaking in complete sentences for a year and his expressive vocabulary jumped ahead by several years' worth of ability all at once.  This is the first time we've had discipline issues around conversational politeness because it's the first time he can really converse!  In the end, we still have to enforce polite behavior, but with the understanding that these skills are newer for him.  We expect the correct behavior, but we correct it gently so that we don't discourage him from talking.

I like ErinYays approach, above, acknowledging the great job using words and the child's desire, but still staying the adult in charge when it comes to the rules of what you expect the child to do.  Very age appropriate (when DS was that age he wasn't yet speaking well enough for us to be there yet, but if he was, I could picture the conversation).

Make sure to have lots of opportunities for activities your child excels at.  We really found encouraging art, building, board games like chess, etc (all the things he did well), eventually brought out the words as he was doing them.  It also gave us some positive behavior time and family time in situations where it was easy for the right actions to happen.