Sunday, August 28, 2011

"Severely delayed" and "At Risk"

David and Mary Louise were evaluated by a speech therapist on Friday for their slow progress in expressive speech. Though David was my main concern, I had Mary Louise assessed as well since they (the therapists) would be here anyhow. She still doesn't qualify for services - not delayed "enough". I am keeping a close watch on her progress and if it slows, I'll get her into private therapy. Currently, however, she is doing very well in my opinion and literally says new things each day - my favorite of the week? "Buv-ooo" She said (her version of), "I love you" as Brent was taking her to bed last night. David actually said it exactly the same too!! It really was a good night...

David was evaluated for 2 hours. He played well after warming up to the therapist and I'll start by saying that above all, I do feel the results of his testing and assessment are pretty spot on...though the terms used and having my gut feeling said out loud and put on paper surprised me in the way it stung.

He is severely delayed in speech - as in he more than qualifies for services through the state program. After we begin there, Brent and I will more than likely explore private options too as the state program lacks in frequency in my opinion. I am hoping to be as lucky with our new therapist as we have been in the past with the in home care though and am anticipating a little more guidance in navigating private care for him.

The speech therapist and intake coordinator offered an autism screening for David. (and for Mary Louise but I declined for her. She scored extremely well - high average - for her age in all areas but expressive speech. There, she was low average - but still within what is considered a "normal" range. - she was at 87 and the lowest score in the "average" area is an 85 - in comparison, David was a full 2 below the mean - I can't remember the exact numeric value and am not up for doing the math right now- and only a 1.5 deviation below the mean is required for services. In short, he is severely delayed in the area of expressive speech.) 2 autism screenings were done. ****note: neither actually diagnose autism but only pin point "at risk" children between ages 2 and 3. Honestly, I don't completely understand the testing and need to see results such as these broken down on paper to properly process them. They will mail out the results to me and we will have another meeting to discuss them and set up therapy after it is all recorded in the Early Steps computer system. **

The bottom line of the results, however simply stated that David is "at risk" for autism on one test. The other test showed no at risk behaviors. It was explained to me that David (and Mary Louise to some extent) show very little independence. That coupled with David's lack of speech and the fact that he doesn't seem "very interested" in playing with other children (more on that in a moment) put his results in the "at risk" category. I'm not sure why I even opted to let them do the evaluation in the first place - I suppose it was because my only reason for not allowing it would be that I didn't feel like hearing what I already knew would be the outcome. In fact, I said, "I know he is at risk - gracious, we knew that as soon as they were born 16 weeks early!" and in my head, I added, "he's also "at risk" for allergies, heart disease, diabetes and skin issues by genetics alone - and hell he is "at risk" for falling every time he stands - WTF does at risk really do or mean?? nothing", I decided and allowed the test to go on...

How did I handle the results? I sat for a minute, then burst into totally involuntary tears that wouldn't stop. I should add that this week has been a little on the horrific side - complete with all 4 of us catching a Terrible (yes with a capital "T") cold virus which prevented any of us getting a full night of sleep courtesy of sweet sweet Mary Louise and her almighty snot bubbles - oh and her AWESOME hyper active reaction to the prescribed decongestant. (9pm one night: "yook Mama!" she said as she jumped up and down over and over. "OUT DIE! OUT DIE!" she began to yell pointing to the windows. She wanted to play outside. I wanted to go to bed...)

Back to the screening:
I blurted out that I felt Mary Louise and David's issues were soundly rooted in their immaturity and consequent but undeniable discrepancy between their emotional and chronological age. I stated that on paper they were almost 2 and a half, but my feelings about their behavior would dictate that they are AT LEAST 6 months behind that (Mary Louise) if not a bit more (David). I blubbered on that a system that couldn't mend to include a criteria for growth and maturation specific for micro preemies was simply too far behind our medical times to be considered anything but ridiculously invalid and that it was absolutely absurd to expect babies born at 24 weeks gestation to reach their full chronological and genetic potential by the age of 2- in BOTH growth and mentality. (phew!)

The therapist listened intently and nodded in agreement. The intake coordinator's opinion is truly of no consequence - and that's about as nicely as I can put that.

I asked what the therapists' feelings were on the results after playing with David for quite some time. She said she, "was not allowed to discuss that with me." I resisted the urge to fly off of the sofa and claw at them mercilessly and instead invited the intake coordinator to step out while I had a frank conversation with the therapist. Damnit - I have a professional sitting in front of me in my house no less but her hands are tied by some bull shit state regulation?? The coordinator looked down and the therapist bravely branched out and gave me some guidance saying that to provide continuity of care and essentially "the most bang for the buck" that this time and age are critical to language development; so, she, in short, would explore private care after first setting up in home care with the state system. She told me to be patient, and that it would take some time, but to follow my instincts and that her impression was that David was a capable and beautiful child. I don't have the words to tell this woman how much I appreciated her moment of candidness.

So that's the results.

David "failed" at the "playing with other children" portions of the testing for various reasons:
1. Mary Louise is, by far, the dominant child here and to be quite frank, can beat the crap out of David, takes anything and everything he has on a regular basis and vies for attention constantly- I wouldn't want to play with her either -though they have been known to be quite sweet together regularly. (please don't read into the above as anything more than a general description of frequent behavior - I do discipline but if toddlers- or any children for that matter- were that easy to work with 24 / 7, the world would be a bit boring eh? Anyhow, the above is not meant to have a tone of annoyance.)
2. David is almost painfully shy in new situations so he clings to me, but often, given time, does just fine
3. We have no other children for them to play with. We have been on a few play dates with a friend from church. She is a sweet baby girl about 4 months older than Mary Louise and David. She and Mary Louise get to playing together with dolls, etc. and David rides on whatever is available. He's not necessarily avoiding them - but isn't really "into" the girly girl activities. He does well with her when I bring him to church on his own though...We go to the park often, but I'm not kidding when I say every single kid that has walked up and tried to play with them gets yelled out by their parents to (and I quote directly on things we've heard), "get away from them babies!" or "don't hurt the babies" or "let the babies have that toy and you go play somewhere else". I have begged, within reason, for the parents to let their children interact with Mary Louise and David, but they smile and say their kid needs to learn to share anyhow and quickly divert them to other play equipment.
4. I stay home with them - there was an awful lot of discussion during the evaluation about their attachment to me(read as- them desperately searching for their perceived "normal" parenting measures by today's standards of mostly day care, extended family care and mother's day out kiddos and me desperately defending myself for keeping them home and healthy all of this time) For the record, I don't feel I have stunted their growth and maturation by staying home with them- or by keeping them home. Our primary concern over the past 2 years has been, quite literally, to keep them alive, well, and out of the hospital. period. I also feel that though they are quite attached to Brent and I, THEY ARE 2!!! Toddlers should be inherently attached to their parents for goodness sake. I believe their attachment - though exhausting at times - is very healthy. I love that they feel safe in their surroundings and know that they have loving arms to fall into every second of every day. I feel very very lucky to be able to stay home with them - and blessed to be able to fully enjoy and witness every whim and action. BUT, this has not by any means been easy and I resent the implication that I am somehow fulfilling an innate need of my own in staying with them; and also the implication that I have coddled them so much that I have encouraged some sort of delay.

Realizing of course that this may not have been the intention of our visitors -but one can only be asked the same question so many times before getting irritated: "Do you ever leave them alone?" "Do you take them to preschool or have you considered a Mothers' Day Out program?" "Don't they have cousins or any other children in the family to play with?" "Have you considered day care?" "I have noticed they are very attached to you. Do you feel this is "normal"?" "What are your future plans for their schooling?" "Did you know that locally, there are (xyz) groups at these locations?"


Having said that, we are able now, to explore the luxuries of outside classes and activities - so finding appropriate play groups, etc. is certainly on the "do now" agenda. I'm excited!

I will also admit that I was certainly harried from the week-o-fun we've had:

Mary Louise has in the past 10 days or so: combed her hair with toilet water, dumped half a pound of flour on the floor, "painted Chester, Lizzie (our dogs) and the cabinets with Nutella spread - thereby bringing the full picture of our crappy week to a literal fruition, fallen off of the back of the sofa - twice - in an attempt to "fly", stuffed AT LEAST a roll of toilet paper down the commode, attempted to stick a fork in an electrical socket (it was covered - they all are believe me) and begun to blame her poo diapers on the dog:
Mary Louise: (patting her bottom), "Momma, poo poo?"
Me: "Did you poo poo already or do you need to use your potty?" (I smell THE smell)
Mary Louise: "Po-yee."
Me: "I'm pretty sure you already pooped in your diaper so you can sit on the potty for a bit if you'd like, but if you already went, you might just be done, right?"
Mary Louise: "No no! Tes-tah poo poo." (again, patting her diaper)
Me: "Oh Chester pooped in your diaper? That's amazing Mary Louise!" (sarcasm does the Mommy good sometimes)
Mary Louise: "Okay. Po-yee Momma."
(she has also blamed the stench on her duff on Lizzie, David, "Dada" and finally "Momma" before conceding that she did, in fact, poo poo in her "dipah")

David has: run a water hose into the kitchen while I ran in to change the laundry over - at least the floor got a nice cleaning I suppose, increased his climbing efforts ten-fold: he no longer needs to pull out the drawers to use the little one inch gap provided by the child no, instead he just uses the drawer handles themselves to climb onto the counter. He has also climbed the built in shelves in the kitchen like a ladder and uses the pull out shelves in other cabinets to get on the counter in other areas. He climbs in the cabinet in the bathroom to get to the shelves where I (had been) keeping my vitamins - honestly, next time we're at the local Children's museum, we're spending some serious time at their rock wall - maybe he'll get it out of his system - Lord knows he can't really get any more agile with it all!

I have: left the sink water running in the kitchen, forgotten, and gave the babies a bath - upstairs - 2 hours later, we had a swimming pool where our stove and fridge reside (no permanent damage done),


had a full conversation with a cock roach (if you know me, you know I am absolutely terrified of roaches - dead or alive): 3am: roach peers at me over the sink when I go to use the bathroom: I see it, and sit anyway:
Me: (sigh) "I don't even have the energy to scream or wave frantically at you. Nor will I dance around like a total spastic freak at this hour. Please go away. I hate roaches and yet don't even have balls enough to squash them. Lucky you."
Roach slowly moseys away and disappears. I wish I was kidding. I'm not because I know I was up for another hour kicking myself for not waking Brent to "get the roach". Consequently, I'm STILL paranoid about going to that's been 4 days.

Brent has: really done nothing stupid or crazy. Poor guy has just been trying to work in between dealing with all of our hootin' and hollerin'.

*** and did I mention that skank nasty snottastic cold we've all had? The one that has, in the last hour alone, caused 2 different coughing fits between Mary Louise and David? ***

Yeah, it's been fun.

All that in addition to an unspeakable tragedy as we heard of a near drowning of a 2 year old boy here. He passed away a day later from complications. He was the son of one of our babies' NICU nurses and also a twin. My heart just breaks for the family. (prayers of peace if you feel so called please)

After all of that, I may have been a wee bit on the sensitive side for the meeting on Friday. Nonetheless, it's done and we're in...and getting David (and Mary Louise) the help he needs was and is my bottom line...



  1. Sorry to hear of your rough week! It is really, really hard to hear anything about delays with your kids and naturally as a mother you wonder, what if I did this, that, or the other... I did notice a big jump in Ella's speech after she went to daycare, but her social skills took a while to develop in that setting. It is hard work to set up playdates and try to keep the kiddos well. It really doesn't sound like they are that off for their gestational age.

    Have you read Nurtureshock? there are some interesting studies on development in there.

  2. your input means so much Kathryn! Thank you! I haven't read Nurtureshock but will surely be looking into it now! Thanks again!

  3. Oh. My. Stars, Heather. When I said you were super mom, I sooooo was not kidding. I think you have always sacrificed & gone above & beyond to do the very best thing for your kiddos. I only pray I would do half as well as you do. Love you & ml blaming the dag had me cracking up! - mccall

  4. I'm flabbergasted at the "plays well with others" criteria. In elem. education classes at LSU, 2.5 yrs. is still considered a "play alongside" age, not always an "interacting" age. The do not share well, and they usually play independently alongside each other. I agree with the above posted who said their child's vocab. improved at mother's day out, but I think that a Montessori approach of putting younger children in with older kids will increase vocab. even more. Do you have any friends with kids ages 4-6 who would treat David and M.L. like a little "buddy" during a playdate? That's when I've really seen my own kids pick up...emulating slightly older kids. Don't fret. You are a great mom!

  5. I forgot to mention that you are obviously a great mom and staying home with them is extremely important! I think full term kids who stay home and probably dont have moms as in tune to all the milestones would not get the best evaluation either. I second the Montessori idea, I wouldn't have thought it, but I think multi age groups can be great. You need a former preemie Playgroup :)

    I just read the chapter on speech in nurtureshock, so it was on my mind. Only 1 or 2 chapters apply to little kids, but it is still interesting.

  6. Whew! What a week! :-) Sorry that you had such a crappy experience with the whole speech eval process. I'm a speech therapist (and friend of McCall's from the W, not just some completely random chick) and mom of a 20 month old if you have any questions about the evaluation or any speech/language questions (my email is or want to vent some more about the crappy Early Steps programs we have. :-)

  7. Heather, Hugs. I know it is hard to hear. Jimmie is in speech twice a week through our state. We will have to make the transition when he turns three (in 6 months) to the school district or what will likely happen private therapy. We have also been pushed to do the social interaction thing. We started in May socializing him. Cousins, sunday school ect.. It took him awhile to figure it out. I physically had to show him how to play with something other than the dog. I also hear all the time, "be careful of the baby," "oh no give him the toy" Jimmie is the little kid that gets picked up all the time. Anyway I feel your pain. Feel free to email me.

  8. I am so happy you have a great support group Heather and Brent. Remember to breathe. Then eat chocolate. I would love to help you in any way I can. First of all, remember what I said in June. I don't think David has many characteristics of autism. We all have some. I think that he has good receptive language; he just needs help to develop his expressive. They both did well when the two of you left them with us and they do fine with the grandparents. Typical behavior for the age. Cry, pitch a fit then just fine once they realize they are fine. I think you have done all the right things; just don't give up. Did the evaluator give you a copy of your rights? There is a whole process for when you disagree with the evaluation. If you don't have it; call and insist. Remember how much they have grown since we saw them since the end of June. I am thinking fight for every thing you can get the state to pay for then look at the private therapist. Again, you can call me any time to bounce ideas off of. Take care and know we all know how much wonderful your little ones are. :)

  9. I can understand your frustration!! My son (an ex 24 weeker was also labeled as 'severly delayed' in speech despite the face that I work with him constantly. I also stay at home with my little one and feel, much like you, that it is the best and healthiest choice for children. I also agree with you that it is COMPLETELY ridiculous to ask a micropreemie to catch up to their chrological age by the time they are two (in fact, I was about to write a post on that myself!). The good news is that you are getting him extra support early on, before he enters school. Keep up the good work! Your babies are doing great (no matter what anyone else says!)