Monday, March 28, 2011

What you talkin' 'bout?

Hi friends! I've missed you!

I'm back in this space, hopefully more regularly! I've been sick pretty much constantly these past few months and have just plain been worn out. I've had a lot on my mind and you know how that happens and you seem SO MUCH MORE TIRED than normal and you just don't want to do anything extra? I'm waving my hand since that's been me for quite a while now.

Back in early December we decided to have Paige evaluated by our state's Early Intervention program. At that time, I'd spent a significant amount of time worrying about her lack of speech and her lack of interest in being with me or caring whether or not I was there. She spent a lot of time playing by herself, looking at books alone in the corner...generally keeping herself entertained all day. She seemed to wander from thing to thing without ever stopping for much time to really play with anything and never seemed to be able to focus on anything. When I spoke to her she never really looked at me or seemed to care about what I said. Her moments of eye contact were swift and fleeting. Now I know it's all called a "Lack of engagement." She could make the sounds of the animals and say "Dada" but couldn't say Mama or much of anything else that would be useful in her day. I wasn't as much worried about her speech in figuring that perhaps she was just going to be a "late talker," but it was the lack of interest and focus in anything that was starting to freak me out along with the fact that she wasn't trying to communicate via pointing or gesturing (which came not long after the evaluation, phew!)

The evaluators came out and it was a melee of women crammed in our play room as they watched Paige wander around and tried to get her to do different things. She ended up having very advanced gross and fine motor skills (well past 24 months and some things closer to age 3), and her cognitive skills were where they needed to be. But her expressive language (the words she says) and her receptive language (the words she UNDERSTANDS) were way behind. Meaning at a 10 month-old level. Paige was 19 months old at the time. They also noticed that she seemed to not be able to focus on things because she was too busy seeking out sensory experiences...she had to touch everything or chew on her doll or play in the bean box...and they hypothesized that THAT was why she was behind...she just couldn't organize herself enough to pay attention and learn from what was around her.

She was immediately assigned different therapies...a developmental specialist (DS) to help her work on social skills, eye contact, engagement, focus, etc. A speech therapist (a speech language pathologist) to help her develop her language skills. And an Occupational Therapist (OT) to help sort out her sensory needs and how to meet them so that she could focus on her tasks. She starting seeing the DS once per week (for one hour) and the others once per month (for one hour). Unfortunately, many snow days, illnesses on both sides and other challenges made the number of visits be dramatically less than planned so I can't quite yet say it has had a huge impact aside from the bits of advice they can share with me at the end of the visits.

But, I CAN say that through my own research, reading and studying I have figured out the best ways I can help Little P at home on my own time rather than waiting around. It may not be perfect, but it's something and it's consistent. In the beginning of January she had 10 words and as of yesterday (March 27th) she has 114 in her expressive vocabulary (words she can say without prompting). She is able to focus for huge lengths of time. She is able to follow directions now and point out anything in a book if I ask her. She is finally starting to mimic us...not just repeating words but also making faces we make in the mirror, silly dance moves, and other games (things she used to be unable to d0). She looks us in the eyes all the time now. She smiles and wants hugs and snuggles. She kisses us and says "night-night" at bedtime. She comes to me and clings to me through the day (which she never used to do). She has starting asking for things she needs and communicates her needs if she can't say the words (she never used to even point at things she wanted or needed...she'd just cry). She's a whole different kid in only 2-3 months' time! I can say that I believe that she's a late bloomer in hitting those certain milestones, but she hit them. My fears have finally subsided as she now acts like the other kids in her classes and even takes certain leadership. It's exciting since it wasn't long ago that she used to run away from the other kids and play alone in the corner and avoided everyone and everything at all costs. She certainly never could take direction or sit still. Now it's all different.

I've spent a minimum of one hour each day (usually closer to 3) of working with Little P. I've read a lot of texts about how to engage a child who is hard to engage. Our best method has involved PLAYING together in a concentrated way for several chunks of time through the day. The website Teach me to Talk has been monumental in teaching me HOW to play with Paige in a way that will engage her, keep her with me during play, and learn to enjoy being with me. In turn, she can LEARN from me (language, eye contact, fun, warmth, give and take, all sorts of social cues). We play with a variety of toys that are meant to draw lots of language opportunities out and it's worked like a charm. I've also learned lots of little social games that are fun. I can barely keep up now with the changes in her! Best of all, for me, is that Little P wants to be with me now and no longer insists on playing alone (she used to run away from me every time I tried to insert myself into her play). She always wants me nearby (which is the normal thing) and we enjoy a warm and loving relationship filled with rewarding moments and fun. I can't tell you how special that is when you missed it for so long. Little P. is able to express herself, share, and include me in her games. It's such a gift. I've also figured out what sensory activities Little P. craves and have learned to discern when she needs them through the day. She can focus and engage so well after a little time in her swing or squeezing the Play Doh...as examples.

In honesty, I spent a lot of time in the past crying and wondering why my daughter didn't seem to care if I was around. It was hard on me after all the struggle we went through to have her. (and I mean that in the way that we went through so much before we were lucky enough to have her and it felt like we'd already "paid our dues" in terms of challenges...of course that's not how life works)I felt such a bond WITH her but didn't always feel it FROM her. It's not to say she disliked me, she just didn't know how to engage with me in meaningful ways all of the time. She definitely had moments of needing me, connecting and enjoying my company. It just wasn't a deep and constant connection most people enjoy naturally with their kids. Now, that problem is long gone and I say GOOD RIDDANCE! I'll admit, sometimes now I get a little down that I have had to work so hard to have all of this happen (and will likely continue to do so). This stuff comes naturally without effort for most kids, and that's just not the case for us. It's been another challenge in my life that left me wondering "Why us?" We did everything "right." (I've learned that our kids come with their own special gifts, struggles, strengths and challenges and it has nothing to do with us as parents unless we are abusers and it's certainly not our kids' fault either...it's just what IS) I'm tired a lot and some days I just can't put in the effort to do so much extra. But, in whole, discovering how to engage Little P has changed our lives so drastically and thrillingly and I just had to write it here and share in case anyone else is going through a similar thing. We've gone through the tunnel and are coming out the other side. We are still on the road. Right now, things are exactly as they need to be and I feel really grateful.

Over the next while, I plan to write some posts about some of the activities and strategies that have worked well with Little P and her being a late talker/having a speech delay and what has helped her engage and enjoy relationships with the people in her life. Any experts out there, please know that my words are in layman terms and in no way am I trying to be scientific in this space. I'm simply sharing what I've been doing in my own words and leaving it at that. There are plenty of reference websites that go into more medical and scientific detail. Also, we are still in this journey and I'm not a doctor so I can't say I am an expert or that Paige is totally caught up on all fronts. I simply want to share what we've been doing since there's not a ton of information out there for the parent besides "read to your child" and "narrate what you do all day." (While those are great things, I DID them and continue to do so...it just didn't make much of a difference for us since P. needed MORE).

So that's what we've been up to for the past several months. I debated about not writing about it all here, but it's very therapeutic for me to share and I feel so many people can relate to my feelings. Little P. is doing so much better to the point where I personally feel she's getting caught up to where she should be now or will be very soon, and because of this, I wanted to share with others who might be wondering about a possible speech delay in their own children. There ARE little things you can do to help... starting NOW while you wait for those evaluations and answers or for time to pass until you can know more. Every child is different, so I can only speak about what we are up to and hope it can spur on an idea or two for you.

Wow. That was a long freakin' post. Sorry. But it's been a lot. Please know that I've missed being here and sharing our adventures. We're in a much better place and I have lots to tell so I'll so you in this space again VERY soon! Be well!

16 comments :

Bee said...

wow that was a really interesting post! thanks so much for sharing. glad to hear that little p is making leaps and bounds in her development with your help! :)

Tam said...

aww Megan you are such a sweet mama and I cannot imagine how hard that all was for you. How wonderful that you've been able to help her YOURSELF and seen the changes in her so quickly.

We are having problems with my son's eating, which has also been suggested to be sensory. He now spits out EVERYTHING we feed him. He has never shown much interest in solid foods but his interest and engagement has declined. He is still nursing but I think that is the only thing even keeping him on the growth curve. An evaluation was suggested and I'm dragging my feet... these issues are so hard.

Lor said...

Awww it makes me sad to read what you went trough. Well, if you think what you do is best for Paige, then it is wonderful. But I really feel very skeptical about this kind of evaluation... We are lucky to have around 10 little kids among our closest neighbours, ranging from 2 and a half (my daughter, more 2 and three quarters really) to some kids around 4, and OF COURSE we cannot help but sometimes compare their development skills. When I noticed the HUGE differences there were, I was shocked when she was younger. (How early/late they hold things, walk, talk etc.) I read a lot about it and decided not to get too stressed about it.
I am not saying that you are wrong AT ALL, I am sure every parents has, deep inside, the right feeling and does the right thing for his/her kid.
From here, I don't feel Paige is "late" in anything.
My daughter speaks very well for her age, a difference with other kids that started when she was 18 months. But now she has pretty much no idea what is going on inside her body in terms of potty training and she just started RECENTLY to do a puzzle correctly (and be able to focus on it too). Around us, some kids speak much less or mumble rather, but two of her little girlfriend have been potty trained for a year now! I am really not worried since all the doctors we saw when she had colds etc. said that they just cannot develop all their skills at once. Imagine all the new things they have to learn! And you see, Paige is early with several other skills which are very important for getting to know the world around her and show that she has curiosity (which is a sign of intelligence!).
For her speach, it might have helped that when she was younger she spent two days a week with her cousin who is 6 months older, who had a nanny who was very much into clear language and no baby talk at all. Maybe. Or maybe that's just because she likes to talk!

I'm sure things will come naturally!

Lor said...

Actually a couple kids I know who appeared to lag a bit in terms of language and listening to others had undetected hearing problems (due to otitis and curable), but I am sure you had that checked :).

Megan said...

Hi Lor!
I definitely understand what you are saying since those are the thoughts we struggled with. But, her speech wasn't the main reason for our worry...it was her lack of eye contact, her inability to imitate anything (physically or verbally), her inability to communicate by pointing, or gesturing (or any way at all), her inability to engage in anything or anyone. Those are things that come naturally in the very early and later infant years and hadn't happened yet at 19 months for our daughter. Those are flags that point to very serious issues, despite her having more advanced skills in other areas. That's why we went ahead with the evaluations and they discovered a lot of areas she needed extra help in. We've come a long way, and I really attribute working with her for hours a day in gaining those skills she should have had on her own naturally but seemed to "skip." Would she eventually have made strides on her own? Perhaps. But, when your toddler cannot convey they are hungry or thirsty or have any meaningful exchange it becomes clear that a little help is needed. I can't even begin to list all the things that were disconcerting (frequent staring into space, etc.). Luckily, all those big red flags are resolving and I can't discount all the work we've put in to get us here or will continue to do to KEEP us here. Again, her language will come...it's the meaningful engagement, eye contact, interest and ability to have a back and forth form of communication that we are going for.

Mrs E said...

Hi Megan,

I have been reading your blog for about a year now but I have never commented before. In fact your blog has inspired me to write my own- I have recently had my little girl Madeleine and want a way to document her life. I just wanted to send you a little note to say that I think your blog is brilliant and Paige is very gorgeous.

Thanks for inspiring me!

Katie x

Lor said...

Hello Megan, thank you for replying. Yes, I guess you are right, this lack of interaction is something I am not familiar with and I understand it can be very scary. You probably took the right steps. As I told you: only parents feel what is right, deep inside!!

Emily said...

Hi Megan,
I've been reading your blog since you were pregnant and I don't think I've ever commented before. I started to comment several months ago when I noticed similarities in Paige that I noticed in my own little girl (20 months) but I felt presumptuous to be a stranger suggesting you get an EI evaluation. My girl now gets weekly speech therapy and OT and they have made a world of difference. I think some kids need something to "click" and whether they get that moment through therapy or through interactions with parents who are now more conscientious of HOW to interact with the child, once that lightbulb goes off, the kid starts to catch up with rapid pace. Our friends and family thought I was crazy for insisting that something was a little different with my girl, but a mother's intuition is almost always right and we were able to get her the resources she needs to thrive. Would she have grown up just fine without therapy? Probably. But the therapy can only help, and more importantly, the evaluations and therapists helped me understand my child's development and to put context and strategies in place to address the specific needs of my child. I know it can be hard when your child has a limitation or delay, but each child develops in their own unique way and it's simply a part of life. I applaud your attitude and approach to the situation. Stay positive and enjoy the wonders of your beautiful little girl as she blossoms before your eyes. It is such an amazing experience to see them find themselves a little more each day!

alicia said...

ahh so glad you shared this! thats what these blogs are for, getting things out...therapy!!

so glad paige is getting some support, that is awesome news and that it is all working! and good for you doing the research and helping her every way you can!

excited to read more about this journey you guys are on.

Stephanie said...

Megan - thank you for sharing. I know it must be really frustrating to wonder why it's happening to you and your family. I think everyone feels that way -- why do I have to worry about what foods my daughter eats and whether she'll be allergic to them. So I think this is all natural. What is good is that YOU took the step to get this done now. I know that pediatricians say - oh only 5 words at 18 months is normal. You recognized that something was off, so that makes you an amazing, engaged parent.

I felt like Charlotte was a little behind in talking and expressing herself, even though it was clear she understood (and still understands) everything we say. She just wasn't saying things! She's better now and is definitely progressing, although I'm worried about her enunciation. I just don't know what is normal, but she's not very good at repeating things in any way that makes sense(she too only started mimicking us). It's getting much better, but still I vascillate from being concerned to not being concerned.

Anyway, all this to say, I'm glad you shared. It's important and this should be your place to express yourself. You're a great mom - it's evident in everything you're doing for Paige.

Suzanne said...

As a professional, I would urge all parents reading this who are feeling concerned about any aspect of their child's development to contact their local early intervention/birth-3 program, area children's hospital, or school system (if school aged). If you thought your child might be sick, you wouldn't wait months to call the pediatrician. I know it can be difficult to hear that your child has a delay or disorder, but please don't let your issues with having your child "labeled" prevent you from getting your child the help he or she needs and deserves.

Valery said...

Welcome back! I don't have much to add to the conversation but I am sending a virtual hug your way! :)

caroline said...

This feels like a very brave and therapeutic post to me. I really appreciated your writing and sharing it. I'm sure a lot of parents face this and it probably is very isolating.

I can tell that you are a wonderful mother, and I can only imagine how bad it must feel not to have your daughter engage with you or seem to need you. It's heartening to hear that P is making such good progress; how wonderful for you and her! She is lucky to have you as a mom.

Laurie said...

Hi Megan...I commented once before on your blog and always enjoy reading what you have to say about your precious Paige. I have to second what Suzanne has said, I've worked for many years as a school psychologist in a public school setting and have a large caseload of young children, ages 3 and up. I too see many parents who wait until their children are 4 or 5 or even 6 before they seek an evaluation, some parents homeschool or place their (delayed) child in a private preschool/kindergarten in hopes they will be ready for school by first grade. Please know that your local school district can refer you to early intervention services for a free evalution and these services can make a HUGE difference if your child is significantly delayed in any of the 5 developmental areas: social, motor, communication, cognition, or adaptive (self help) skills.

Nikole said...

I thought I commented before, but it must not have gone through. :)

Thank you for your courage in sharing what you have been going through for the past few months. We have been having some big challenges here too - and while they are very different from yours, I can really empathize with the feelings you expressed. I'm so glad that you reached out and are seeing marked improvement in your daily interactions with your sweet girl. Sending you strength and presence as you continue on your journey. Thank you for being such an inspiration - as always! xoxo

Megan D said...

Thank you for your post. I feel inspired by your ability to react to situations with a great balance of emotion and logic. Your patience and diligence in doing the right thing for Paige is truly remarkable. You are a good mommy and I hope you take a moment to feel proud of how well you have tackled your parenting challenges.

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