Monday, February 27, 2012

Severely Delayed

I love the words "severely delayed" when the weatherman is telling me that the storm that was going to screw up my afternoon run wont be in my neck of the woods until midnight due to some ever-changing weather patterns.  I even expect the words when discussing when the local train might get me to the City (due to 'switch problems' most likely). 

But they are two words that I never, even wanted associated with my children.


If I'm honest, I can say that the fear was always there.  Second trimester births come with problems; we all know this.  Prematurity breeds a lot of problems, chief among them death of course, but there are a slew of others.  Increased risk of learning delays and disabilities, autism, vision and hearing problems.  You name it.  Babies need those 40+ weeks to gestate (and sometimes, even that isnt enough to guarantee a life without difficulties).  Born at 27 weeks, I expected something.

But really?  Who expects bad when the road is fairly straight?

When Maya's eyesight showed problems while they were in the NICU and she had laser surgery, I told the Universe "Okay!  That's her issue!  No more!"  The Universe apparently heard me because the laser surgery corrected the ROP Stage 2+ and she is your average sighted 2 year old.  At their developmental assessment last month, she assessed chronological (as usual!) and at their Early Intervention assessment today, she registered between two and a half and three and a half years old.  Lots of words, lots of sentences.  Social butterfly.  That's my girl.  A bit like her Mama (seeing as she can barely keep her mouth closed long enough to let someone else get a word in edgewise!).

I hoped that one rollercoaster might be all we would have to ride.  I mean, let me be frank:  I think we've paid our dues and, since they missed out on 3 months of womb time, I think Bobby and Maya paid their dues early on as well.  I mean, really.  There's cosmic fairness, right?  Oh, wait... Not so much...  For a second, I'd forgotten that.

When they were smaller, Bobby always scored chronological age on his gross motor and Maya would score adjusted age; fine motor skills were the reverse, with Maya scoring chronological and Bobby at adjusted.  When all the scores were computed, they would score chronological and we'd move on, happy that another eval was behind us.  Around their second birthday, Maya's verbal skills took off.  She loves to chat anyway, but sounds became words and words became sentences, commands, and questions.  When I tell you that she loves to talk, love may not be a strong enough word.  Bobby, however, not so much.  Since both of our brothers were delayed speakers, our parents weren't that concerned, but Peter and I brought up the idea of possibly looking into speach therapy.  We decided to wait until we visited the hospital's developmental assessment clinic for their 2 year old appointment before calling someone, assuming that Britta, the therapist, would tell us if there was really cause for concern or if Bobby was just on the quiet side of normal.

We hadn't been to our appointment (last month) five minutes when Britta said "Call Early Intervention.  Today.  Don't wait."  That didnt sound promising.  She explained that she was no speech therapist, but that she was a bit more than concerned about his lack of speech.  She also felt that his frustration (when he didnt get his way) was due less to behavioral issues and more due to his being frustrated at his lack of communication. 

I called EI as soon as we arrived home, and scheduled assessments for both kids.  They came this morning and stayed with us for two hours.  In addition to a service coordinator, an education expert and speech therapist came.

Maya, well... She was Maya.  Typical Maya.  And, being herself, she registered at her (nearly) chronological age of 2.5 up to 3.5.  Woo Hoo, Princess!

Bobby.  I dont even know where to start.  In fairness, he was all over the board.  In some categories, he hit the 3.5 to 4 years old mark.  He knows his states, can identify them on a map, was counting to 20 (and backwards down to 1) and was more than happy to sing his ABCs.  They told us how smart he is and that he is an extremely intelligent boy, who shows no signs of autism or, at this point, of learning delays.  That being said, his speech is delayed.  Severely delayed.

He assessed at 10 months.

You read that right.  Ten months old.  Less than a year old.

I'm sure that my shock was visible.  The therapists explained that much of his skills are above that, so he is over compensating for a "shaky foundation" in verbal skills.  Imagine a ladder with 10 rungs.  You need to get to the top.  The average child would start at 1 and work their way up.  Bobby decided to grab the rungs at 3 and work himself up from there because, for whatever reason, the earlier levels werent working for him.  But, in skipping those levels, he's skipped some of the things he needs for good verbal communication and, if he continues to skip over them, it's going to make life harder on him the older he gets.

For example, he doesnt say "no".  Like, ever.  He might shake his head, he might even sign it on occasion.  He'll not let you have something you're trying to get or he might throw a fit, but he wont speak "No."  He rarely says "Mama" or "Daddy" unless we are coming in from somewhere and it's more like a "Hey, there's Mama!/Daddy!" type thing and not just a "Hey, Mama, can I have that banana?" type thing.  If he wants one of us, he comes up at takes us by the hand.  He's a very visual child and he prefers physical contact over verbal cuing. 

There are exceptions.  The child loves food.  He'll ask for a banana or an apple.  He'll cry for Mama if he's sick.  But they are exceptions.  Maya most often talks for him when they are together, and, while we've made efforts to reinforce language, because he's smart, we've given in I think and let him go to his counting, letters, colors, shapes, etc, and said "It's okay.  He must not want to talk in earlier stages." 

And now, we're here.  With a smart, beautiful, wonderfully intelligent boy who assesses as a 10 month old in his speech.  Part of me wants to know how we got to (nearly) 29 months without seeing this.  The therapists all said that these issues wouldnt become clear until around 24 months (because, until then, it could just be a selective nonverbality) and that, accounting for their birth age, it could have been up to 27 months before it became clear.  That's December, when we first started seriously discussing it.  They've said that this is the best age to address the issue... That there isnt a reason to delay his preschool and that, with weekly therapy, he should (fingers crossed) be on par with his classmates, from a verbal point of view, by the time he starts preschool in the fall.  They've said that we've done nothing wrong and that we've identified the problem at the beginning.

And yet, I still feel as though I've failed him.  It's not enough that he had to be born premature and spend the first months of his life in a hospital, but now he is struggling with his basic communication.  How long has he known (because he is smart and I have no doubt, as they had no doubt either, that he knows there is a problem and that's why he's turned to other techniques of communication)?  How long was he trying to tell us and we just missed it?  As I sat in the kitchen crying quietly, after the therapists left and Peter went to work,  he ran up to me and wrapped his arms around me, settling his head into my neck and breathing out "Mama".   Then a big kiss on the cheek, and continued kisses until I kissed him back and thanked him.  But even after he'd run back in to play with Maya, he kept checking on me (while I was making lunch) to hug my legs. 

Like I said, he's a smart boy.  And a very empathetic one.

In some ways, that hurts my heart more... To think- to know- that he's known there was an issue... to not be able to tell us... to not have us just pick up on it...  Has he been struggling?  I just dont know.

Going forward, we have a plan in place and I hope that it will be as smooth as the therapists think it will be.  Each week, beginning in about 2 weeks, a speech therapist will be coming to the house to work with Bobby directly and to encourage and give us skills for how to better cue his language skills at home.  They recommended that we take away the noise-making toys, especially his favorites like the map and the ABC drum, assuring us that he wont "forget" the info he's learned.  They just dont want him to fall back on it when he gets frustrated and doesnt want to work on his verbal skills.  As my mom said when I spoke to her this morning, it's possible that he'll ask for the map in a few weeks!  What I wouldnt give to hear him say "MAMA!  GIVE ME BACK MY MAP!"  I'll give him that one, and another one!

Over the next few days, we will take away the sound-making toys and we're asking that anyone who spends time with them not have sound making toys out for them (or give them gifts of sound-making toys).  I'll box them and put them in the basement, keeping out the more simple toys.  It's hard having the two of them, but Maya doesnt really play much with the sound toys anyway, so I dont think that she will mind (too much).  The goal is to focus on the building blocks of language for Bobby, so that he can climb up the rungs of the hypothetical ladder without any problems, instead of just jumping and grabbing onto a higher rung.  They've suggested reinforcing word connections and, if he doesnt repeat them, repeating them for him.  (For example, "Do you want a grape?" If he reaches and doesnt respond "grape", giving him the grape and saying "grape".  Or asking (without the object in sight), do "Do you want juice or water?" and having him respond, without an identifying object, "juice"/"water". )  We should reference names as well, by constantly referring to him as "Bobby", her as "Maya", Peter and I as "Daddy" and "Mama", etc.  He knows the labels, but the idea is to encourage the sound skills.

It's hard.  In addition to feeling like I've failed him somehow and the enormous guilt I've had since their birth about their prematurity (to which this gets added), it's a struggle because he's intelligent.  I know that he knows his name... but he doesnt say it.  I know that he knows I am his mother and that, if he wants me, he comes to find me... but he doesnt call to me if I'm another room.  I know he knows that the juice is in the fridge and that he's welcome to it... but he doesnt ask me for it (routinely... there are exceptions).  It's hard to know that the knows these things and cant? isn't? verbalizing them.  And that's the other thing: is it a "cant" or a "wont".  No one really knows at this age, so we have to assume it's "cant" and work from there.

The good thing is that the county is covering the cost of the speech therapy and that it cant hurt him.  When he can (or chooses to) communicate effectively, the therapist will recommend discharging him from therapy.  If it turns out that this is a concern that needs additional addressing, he'll be moved to Early Intervention (from ages 3-5) and, if it is on-going, then the school district will help us with therapy, whether he be homeschooled or at the parochial school.  So, that's good news.  And, because we are addressing it early, there is every indication to believe that in 6-12 months, he'll be discharged and speaking age appropriately. 

We love him.  We love Maya.  We will always love them, no matter what.  But the idea of one or both of them struggling causes the air to leave the room and I feel like a fish slapping around on land.  It breaks me to my very core and everything in my being wants to take whatever it is on myself so that they never have a moment's hardship.  It sucks that I cant...  That I cant fix it.  I remember that feeling with Maya's eyes, and now I have it again with Bobby's speech.

I know that we are so very lucky with them. In the grand scheme of things, we are unscathed and they are happy, healthy, toddlers.  There are parents who deal with so much more than this on a regular basis, and I can imagine that our challenges seem tiny in comparison.  I dont mean this post to be an insult to their challenges and concerns; but, for us, this is a big deal.  It's all about the fish bowl you are in, I suppose.

So, if you would, continue to ask St. Blaise to intercede for our little guy.  And hope with us that the speech therapy will give him what he needs to develop outstanding verbal communication.


Hillary said...

My heart hurts for you as you know I know exactly how you feel right now. Prayers for you and your little guy. I know that with a wonderful mother like you Bobby will be able to push past this and master the skill of speech!

Good luck and keep us updated with his progress!


Leah said...

I could have written a very similar post about my K-Man. He is severely delayed in speech, and I know he gets frustrated because of it. He used to throw really bad tantrums, and I really do believe it was because he so badly wanted to communicate. . . but couldn't. But can't.

Some days, I feel down about his days, but I also am so happy that he's my son, and that I'm vigilent enough to get him the help he needs. Just like you are for Bobby. You are doing everything in your power to help Bobby succeed, and at the end of the day, what else can you do? I wonder what happens to the kids with these issues who don't have parents who know about all the resources (and free resources!) available to help our children.

K has been in speech therapy for months now, and we love his therapist, and we all look forward to the appointments.

Thinking of you and your family.

Barbara said...

Some years ago when I worked as a nanny I looked after a little boy of two and a half who had speech difficulties. His parents engaged a speech therapist and at their very first session she asked him if he could say the word "basket". "Yes" he replied with perfect clarity and carried on doing whatever he was doing. His Mum and I were in stitches trying to keep the laughter quiet!

His particular problem was that his brain was working faster than his mouth and he just got too frustrated trying to get all his ideas and thoughts out and so didn't try. We used similar tactics: repeating everything he said (and didn't say) and weekly speech therapy. He is a very intelligent young man now who has no problems at all communicating.

Bobby's "problem" has been caught at just the right time. Don't blame yourself, children move at different speeds and some are talkative, some are quiet. But really, Bobby is SO lucky to belong to a family that will do everything possible to help him find his way.


Ms. J said...

I understand a lot of what you are sharing, including all of the EI stuff (because you know where I am located in country, too). Peanut was way behind, and now, 7 months into it, they're close to ending the speech therapy because she's really picked it up.

It was hard and heartbreaking at first. There will tantrums and frustrations. We, as parents, had to unlearn some of the things we were doing, and had worked splendidly with Lil Pumpkin.

But in a couple of months, you are going to notice a difference. And in 6 months, a huge one. He's smart and has developed awesome coping skills to get around it. Now he needs a bit of help in learning what he was able to skirt around.

One of the things that was very helpful for us was to not have LP present for the speech therapy sessions. So if you can have someone take her out on a walk, or to their home, for an hour, it will pay dividends. Occasionally our speech therapist wants LP there so she can assess how Peanut is doing when her very talkative sister is present.

Also helpful . . . outings to the grocery store, etc. with JUST Peanut. WOW, holy language explosion and teachable moments. Give it a try...have Peter or a g'rent watch Maya while you run errands with just Bobby. We didn't think of this until we were 5 months into the speech therapy, and it's been hugely helpful.

Text me if you need to talk. You are a tremendous, awesome, good mom. This didn't "slip by" you like dirt under his nails. You are in proactive mode now, and are about to embark on a language adventure! Remember, it will be more frustrating on some days, but adhere to the techniques they suggest. The EI people are terrific.

Michele said...

We do the one-on-one trips when we can, initially because we wanted them to realize that they are unique people, not just twins!

They actually asked that Maya be included in the therapy because he responds better to people when she is with him (in new environments). So we shall see!

quadmom said...

I totally get how you feel. Sophie just spent the afternoon screaming through her entire PT session as they work to get her walking. The screaming is so sad, but I know it is necessary or she will fall behind physically even more. She has to work past her sensory issues. And I feel the guilt of wondering if only I could have kept them in longer ... if only ... but you know, we did keep them in a really long time, and you know Bobby is so smart. He will take off with speech therapy. Ethan got speech at 12 months and within 2 months of therapy he caught right back up with the twins and Sophie. The therapy is seriously amazing! If you have a good therapist you will see outstanding results.

*big hugs* You're awesome and so is Bobby and he will be jabbering away in no time. I just know it.

Queenie. . . said...

I totally understand how you feel. But you are great parents, and it's totally understandable that this wasn't caught until now. After all, how often do the doctors tell us that every kid develops at their own speed, and some are better at some things than others? And he is clearly really smart! So give yourself a bit of a break. You're doing a great job with them, and you've caught the problem long before it turned into a real problem. He'll be just fine. How could he not be, with you as his mother?!

Catherine W said...

Oh Michele. It's very hard. I know I feel the same way, that my little girl has paid her dues. That she's been through enough and deserves to have an easy ride of things now.

I don't think they keep as close an eye on ex-prems here in the UK and I have no idea what Jessica's verbal age would have been at 29 months but she had hardly any speech at all. Probably not far off ten months if that.

Interestingly, like Bobby, she tested at her chronological age or higher in other areas. Her understanding has always been good, she can identify numbers and colours and point at a whole variety of things in books. But, for a long time, she hardly spoke. She never babbled much as a baby either, she was fairly silent. She never said 'yes' for a long time (always been good at saying 'no' though, ha!) and, like Bobby, knew where the juice was, knew that she only had to ask but she just didn't ask. She still very rarely requests a drink or anything to eat.

But, even knowing all that, it is a terribly shock to hear those words, severely delayed. It feels like a punch to the stomach especially after all our little ones have been through and the guilt of not being able to hold them inside for longer. And then additional guilt when we know that these challenges are tiny in comparison to those we could have faced. But, as you say, it is all about the fish bowl you are in.

Sounds like you have a good plan in place and I hope that Bobby's speech will just take off. Jessica's is certainly improving week on week at the moment!

Baby Smiling In Back Seat said...

Burrito's evaluation in the fall said that his speech was way, way behind. Today his teacher said that she wants to move him up to the class with kids who are .5 to 2 years older because he communicates and understands so well.

Tamale was advanced in speech last fall, and now she's behind.

Things change so much at this age, in all sorts of ways.

The speech therapy will be great for Bobby. Soon he'll be talking nonstop and it will be hard to remember what it was like when he didn't -- at least it's that way for us with Tamale's severe motor delay.

Take care.

Fran said...

Sweetie, I know this is so so hard, but I'm sure with the right therapy he'll make huge progress extremely quickly! You'll see!! I'm keeping you in my thoughts and prayers. Fran

Brigid said...

I'm so sorry to hear this. I would think you guys deserve a break after all you've been through, but I know you'll make it through this. You're all in my thoughs!

MrsSpock said...

I know as a mother, it's hard not to blame yourself. My mother became pregnant with me 9 weeks after having my sister. She was severely anemic the whole time, and my amniotic fluid was infected when I was born. And I have a host of health issues. She blames herself. I tell her, "I wouldn't be alive otherwise!", but she still feels guilt. My son has a congenital heart defect that may require open heart surgery by the time he is in his 30s. I feel guilt- I was likely Vitamin D deficient, and I didn't know until after E was born. E was hospitalized for RSV as a newborn, and my pediatrician told me just in the past months that new research shows a deficiency during pregnancy is correlated with an infant's risk of serious RSV. I could not have known- but I still feel guilty.

The mister was deaf until nearly the age of 5. He was severely speech delayed, and required years of ST, and despite having practically a genius IQ, was held back a year in grade school due to issues with processes auditory stimuli. As an adult, he enunciates every word, and still has problems processing information via hearing. His speech is garbled when his brain runs faster than his speech processing. He really wishes this could have been found and addressed years earlier.

schnitzelbank said...

Hi - I'm sorry to hear that Bobby has some speech issues. You have a great plan in place, and it is wonderful you are on top of this so quickly. I wanted to share this link with you, it might give you some ideas to work into your daily activities with Bobby. Best wishes from LA.