Tuesday, February 28, 2012

I hate labels (especially human ones)...

A little bit of a vent, but mostly an attempt to make sense of my own feelings and thoughts on continuing David's public system speech sessions:

David and I met at home with representatives from our local school board yesterday. The goal was to complete his evaluation for services. Again, the school board takes over his speech services the day before he turns 3.

They spent 2 hours here talking to me and playing with David. There were 3 women - a social worker, speech pathologist and, I'm not exactly sure of the qualifications of the third woman. Again, they were very nice, but of course David was less than excited about the interruption to his day. He did as well as he does in any somewhat foreign situation. He didn't talk much, but did engage with them and played some of the games they wanted him to play. Of course he didn't answer questions they asked...and 2 hours in, he was done. I mean really just done - like temper tantrum, tears, and yelling done.

Their bottom line: mild cognitive delay. That really hurt - physically. I was fine with their testing, their filling out of papers, their over exacting line of questioning: "when exactly did he start to say more than 10 words?" "at what age did he start to coo or make any sounds?" I was fine with them prodding into my parenting style and our decisions about their medical well-being, "so they've never been in a play group?" "have you considered maybe putting them in daycare?" "so you just let them (him) play without structure? How long? How often?" Then the ever patronizing, "well, you know, a child must learn to deal with structure to be in school. They must be able to pay attention and sit in a desk." I was referred to as "over indulgent" a time or 2.

Umm. Again. He's 2. For some parents, and some children, they may be ready for a school-ish program. I'm not knocking that. But I resent the implication that all children must be ready for such at a certain - ridiculously young -age; and that by going against this SOCIAL practice, I am somehow exhibiting an over-bearing or over protective behavior and thereby stunting David's development for my own needs. Is it so far fetched that I might have a more reliable opinion of my own child, with whom I literally spend 24 hours a day, 7 days a week, than that of a stranger who has known him for 2 hours - enough to form a first impression...of a toddler? How about we all take a small step back and put down the standardized test for a minute.

I hear it almost every week- put them in day care, a play group, a mother's day out program. I get it - they are the school system - they look at children and generalize how they should be acting at a certain chronological age. However, if David was ready- emotionally, mentally - to be in school, I would put him in school. Brent and I sacrifice alot for me to stay home and care for Mary Louise and David - and even more so that we can spend these first formative years as a family - as a primary influence. We read our children and do what we feel is best for them- regardless of relatively new (or old) societal practices- while recognizing that gaining a strong sense of autonomy is important to developing into a confident child, teen and adult.

Accordingly - we feel it's best for David to continue his therapy services, as a preventative- to head off possible issues before they become habit- and he seems to enjoy the experience and is making wonderful progress. Otherwise, I'd tell everyone to figuratively "take a hike" and be done with the running around and jumping through hoops. Mary Louise is showing signs that she would do well in a group, structured setting. We are seeking out avenues to facilitate what she seems ready for - knowing that David just isn't quite there yet. People can argue more "hard core" tactics all they want: "you need to let go sometime" "you can't just shelter them forever" "they must learn to function and listen to what is asked of them" "sometimes you just have to push them into discomfort to get results- and be ok with tantrums in response". Again, let's keep it in perspective - they are 2, not 22, not 12, not 6 or 7 when some countries actually start school. They are 2 - almost 3 and remain quite immature for their age.

Ultimately, we're all trying to do the best we can. I, like any parent, want our children to be the best people they can be - individually - not by some test score. As for the pushing, I feel that in certain instances, a push is more than warranted: when we were concerned with the lack of speech progress, I pushed to get David into programs; we were concerned with toe walking, we pushed for a consult; if undesirable behavior is exhibited, we consistently use a time out session and Mary Louise and David are not allowed out of time out if they aren't calm and quiet, we encourage them to pick up after themselves, to say prayers at bedtime, to make eye contact when we talk to them, to try new foods and textures; we believe in teaching about resources at hand - we push the kids to get their hands dirty, plant things, make constructive messes, respect animals, environment, explore the parks and natural tools at our disposal, exhibit manners around other adults, verbalize feelings - hurtful or good, express love and praise. We push in different areas - social development is something that comes with time, with maturity, and with comfort in certain situations. It doesn't have to be traumatizing. Nor does it have to come with an air of parental desertion.

You can say that I'm hyper sensitive - obviously, I am to some degree. It pains me to no end to think that people might miss how amazing David and Mary Louise are - not because of "how far they've come" or "all they've been through" but because of who they are today - as human beings - a make up of their experiences of course - but typically not the experiences upon which people who know their history most focus. To label a 2 year old, in my opinion, and in this situation, is a disservice.

I don't honestly know the solution to this. "The system" needs some organization, some way to catch at risk children- categorizing seems an obvious fix all. But am I the only one whose knee jerk reaction is to translate "mild cognitive delay" as an implication that the child is "a little slower than average" or, in the most watered down and ignorant terms, "slightly stupid"? It's offensive - not to mention flat wrong.

Welcome to life sweet David - this is one area from which I really do wish I could shelter you a bit longer. You are smart, funny, compassionate, and amazing in more ways than I can count. Surround yourself with people who lift you up and leave all others by the way side. They, I assure you, are missing out.

I guess it doesn't help that David got nervous and pitched a fit at the park the day before all of this and I watched parents actually take their child home because they didn't want to be around "that kid" -whatever that means. Thanks to those parents for making a big deal over a kid crying at the park rather than just explaining that sometimes children just have off days.

Once the results of the test was explained a little, I did agree with the opinions of the testers. They said that David did things when, and how he wanted to do them - and that he was not apt to do things on command. They felt he knew much more than he was telling them, but staying all day would not have ensured he would "perform" in the way they needed. Where we sort of disagreed was that they felt these things were a problem - I see them as toddler behavior specific to David.

Again, we went over my concerns - or one concern: expressive speech. I said that his vocabulary is wonderful but often difficult to understand.

I spoke with his weekly home therapist this morning. She recommended I really really consider day care and / or a mother's day out program a few days a week and assured me that David's tantrums would resolve in that setting in "about 4 or 5 days". She was polite about it - she's said it many times - she believes in very structured environments that mimic a school setting. She thinks David may have some mild sensory processing issues and she predicts that he may be a "quirky" kid. Having said that, she tried allowing David to lead the way during the session this morning and was really surprised with the verbal results. David exhibited tons of spontaneous sentences, words she'd never heard him say, appropriate questions and requests. In short, he did very well during the hour and was happy when Mary Louise and I came downstairs to join him.

So, what do I think? I really, in my heart, feel that David simply needs time. I think it's absolutely nothing short of absurd to characterize a child as "quirky" or as having a "mild cognitive delay" at the age of 2 and doing so only perpetuates stereotypes and useless labeling.  I feel David has the very same personality now that he had at conception - regardless of his NICU stay. He needs time to mature, time to develop into his own person, time to PLAY and time to be a kid.

When did we all get so very focused on taking this away? From the time a child is born, parents face criticism and pressure - do you breast feed or bottle feed. How long? Is the child on solids yet - hurry and start them. Cosleeping is wrong. Crib sleep is traumatizing. Take away the pacifier and for goodness sake, get them socialized. You must have a Bumbo seat and an exer-saucer is now a non-negotiable baby accessory. Your child cannot develop properly without some sort of electronic gaming device and/ or televised tutoring system.  Enough already. There is no right. Do the best you can with the knowledge at hand...and above all, enjoy it. Have fun. Love those babies like no one else can.

I will be contacted again in a month or so to discuss official results of the testing and to begin the process of forming an IEP (individualized education plan). Then we will talk about services available in our area. Services are done throughout the regular school year - meaning that with David's birthday being at the end of April, he'll have a month or so of services before they let out for the summer.

Until then, me and my quirky baby boy (and girl) will be off playing outside- in the dirt, playing in paint, going to the children's museum, the park, and sometimes the store, baking bread and cookies, pancakes and spaghetti, and taking part in an assortment of other non-scripted activities on a whim and whenever possible, Dada will tag along for the fun - because, in this house, that's the way we do things.

xo,
Heather

P.S. I feel better now - and less muddled. Thanks.

10 comments:

  1. I hate people. I really do! They are freaking two years old! Some kids stay home with their parents right up until Kindergarten - and if they weren't preemies or had some other issue they were being evaluated for, they would hear none of this garbage.

    Even besides the germ factor, I totally support kids being home until they are closer to school age. It didn't work out for my family, needing both our incomes, but we did manage to keep Gav home the first year, and at a small (4 kid) in home until he was 2 1/2. Sam was with a nanny until he was 2 1/2 with one other child.

    Have they given any consideration to the fact that he's a twin and it's typical for one to sometimes be less outgoing and overshadowed a bit by the more extroverted child?

    The whole system is stupid. Kids don't need more structure. They need less structure! I really believe the prevalence of a lot of modern "disorders" such as ADHD as just due to the fact that we keep placing higher and higher expectations at younger and younger ages and they don't get to just be kids, and grow up in their own time as they should. We're turning them into neurotic high-performer wanna be's that have no sense of control over their environment.

    I see it in Gavin. School should not be terribly stressful in second grade. They try to make it fun, but it is so full of testing and standardized tests and what level of reading they are on, and did they make the easy list or the hard list for spelling....kids shouldn't be that aware of their status in the classroom (in my opinion).

    Ok, now my rant is over too. Good job, mama! That's really all I meant to say :)

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  2. Sorry Heather! That would be so hard to hear as a parent. I agree with Bridie, plenty of kids that are at home are not observed because they aren't preemies... and thus don't get labeled. Of course it is good that you can get early intervention, but it really isn't fun getting the labels that go along with it. I'm sure that David will 'outgrow' this stuff. Sounds to me like you are doing a good job!

    It sometimes makes me crazy when people talk about academics for preschool age. Play is most importand, and they can learn while playing. We are doing montessori preschool now, and I like that my kid doesn't come home with a learning sheet every day. And I'm prefectly fine with the fact that she is NOT learning to read at age 3. You probably don't have a Waldorf School in LC... the ones here have parent attended classes for toddlers/preschoolers.

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  3. Hey there!

    I am one of the lurkers reading from far far away. I really like your blog :)
    Your post just made me realize how much of our world consists of judging and hate. Unnecessarily trhown at others. What hurt you today has hurt many parents before and there is no sense in labeling a child at such a young age.
    I immediately thought of a Montessori program reading what types of things you do with your children and how you feel about structured learning and such. Maria Montessoris most know sentence was "help me to do it myself" and most activies are led by the child once he/she is ready. If you feel a "regular" school program might not be the right environment for your child a program with a little different approach might be. Waldorf has already been suggested but there are many more. They focus less on "performance" and more on personality developement. Montessori also does not group children by age (usually) which could be benefitial to David as he could stay in one learning group throughout his whole schooling and not have to change groups in case his developement is different than that of other children his chronological age.
    Wishing you and your soon-to-be-three cutiepies all the best
    Maria

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  4. I love how you wrote this. Your line, "How about we all take a small step back and put down the standardized test for a minute." had me laughing out loud. It is so true. My twins just did their 18 month developmental test. Cade did not feel like "performing" at all. He was more curious about opening the door and exploring what was in the hallway than putting the puzzle pieces in the puzzle. I think early intervention is great, but with micro-preemies, the extent of the extensive testing is a bit much. What adult can perform well on 2 hour tests much less 18 month olds and 2 year olds?

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  5. Heather you know what is best for your kids you have done such a wonderful job raising them and keeping them away from sickness. Be confident in your instints yours are really good. I hate labels placed on children as well. It discriminates against the child and may effect that child in the future. OMG they are still babies. You were very patient because I would have told the ladies to go to hell well before the two hour session was finished.

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  6. Hello.
    I have been following your blog for a little while now. Just wanted to post my opinion. I have 7 year old triplets. Still a stay at home mom. 2 boys 1 girl. My daughter excels at school. Loves it. Girls tend to like school and do better at this age I think.
    1 boy who started speech and got an IEP at 4 years old. He has really needed the speech help. He struggles with fine motor skills and is quiet but likes school. Boy 2- no IEP's yet. Very social but struggles greatly with learning how to read, math. Excels in sports. I too did not have them in a preschool. We went to parks, libary time and just had fun playing/doing projects with various friends.
    Just kept them social, but having siblings the same age they always had a playmate, learned sharing ect. I too do not like labeling children and for gosh sake yours are 2 years old. 2 year olds are 2 year olds. One thing I do have to say getting an IEP for Boy 1 was the best thing ever!!!! I don't think he will ever be overlooked at school when learning becomes a struggle. The school has to stay on top of him and offer extra services. Boy 2 I believe will be getting an IEP this year do to some learing disablities due to being a preemie. Other moms have complained to me that their struggling child is getting no services while mine are being over monitored. I have stressed over the lables myself too but right now I am so thankful boy 1 got IEP at early age because I feel they watch my triplets so much closer. Sorry this got so long. Just wanted to add it seems like your kids are doing great. -Kimberly

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  7. You are doing EXACTLY what you need to do for your family and your children. You are a champion. I went through the EXACT same thing when we decided NOT to enroll Curt in PPCD at age 3. Now I did change my mind 2 months later, but I still hold my reasons were valid. Good for you!

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  8. As a speech therapist, I struggle with speech therapy for 2 year olds. I admit that I do recommend it but am torn--when I'm at work, I feel like I'm doing what any parent could do (well, at least those with common sense) and when I'm at home playing with Caroline (my almost 25 month old), I feel like she lives in speech therapy. So much of therapy at this age is play therapy but I know from 1st hand experience that some kids will do things for an SLP that they won't do for mom or dad and vice versa. I think they might be jumping the gun on diagnosing the mild cognitive delay. So many things factor into what is going on with kids--whether they're having a good day, if they're a boy or a girl, if they're a twin or triplet, if some mysterious demon temporarily possessed them (this happens to my Caroline frequently--just read my blog!). I hate standardized tests for little ones but they're a necessary evil (especially in the school system--it's all about the scores on the test). I feel like I know you from following your blog since the babies were so little, and it is obvious that you are a wonderful parent who does her very best to let your kids have all these amazing life experiences. There are pros and cons to kids being in daycare and to staying home with mom and/or dad. You have to decide what you think is best for your child. Mary Louise and David (and Suga) are lucky to have such a great mom who always have their best interests at heart. At an evaluation, we therapists have a brief (and sometimes unreliable) picture of what a kid is like...but mom is the only one who really knows. Good luck with all of the navigating through school paperwork and IEP's (definitely don't miss that!!).
    PS--Sorry for the rambling post. Hope it makes some sense. :-)

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  9. Heather,
    I too have been watching from afar. I commented on your intiatial post to say you were pregnant with Suga. I am a very old friend of Brent. Anyhow, I have a son who is now 2 years, 4 months old. I am always worried about the fact that he does not seem to have the "expressive speech" I think he should by this age. I compare it to other kids, and also, have worked with kids for many years, teaching swimming lessons, being a nanny, etc.

    What bothers me, is that I am being told "he's doing just fine, the speech will come; while you are being labeled for the same thing. It does not make sense. My son (Parker) was not preemie, much less micro preemie, and I've been following your blog more closely, as you've been talking about David's speech since last fall.

    My son does go to a Mom's Day out, even though I am not currently working. I enrolled him last August, before he turned 2 in November, for the socialization and possible help with speech. We are now in March, and honestly, i do not think his speech has gotten all that much better, as a result of this program... if that makes you feel any better about that decision.

    In my own parental opinion, expressive speech seems to be his only real weakness. However, he is very very shy, even around his own grandparents. Therefore, I'm certain, if I have him evaluated, he would have the same results as David.

    Sorry to ramble...I just wanted to share my story of a full term baby, who seems to be exhibiting things similar to David (Tantrums, too...when he gets mad at a particular toy, because it doesn't perform the way he wants, he just throws it.) Yet, he is very very sensitive. When corrected, even in an upbeat and positive tone, he will duck his head in embarrasement, and offer me one of his toys ( I suppose to say he is "sorry")

    I think you are doing a fantastic job! I will likely have my son evaluated soon for the speech issue; however, his pediatrician keeps telling me that as long as he is communicating effectively, the speech will eventually come.

    Again, sorry so long-winded. I just think you are a super mama and certainly know your child best. I appreciate your posts very much, and enjoy following your blog.

    Take care...All the best to you, Brent, "the babies" and Suga!

    KC

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  10. Heather,

    This is KC, again, and just wanted to add a P.S to my former note. As I mentioned, my son has temper problems as well. I notice that your therapist said, with a mom's day out/ daycare, it should subside within 4-5 days.

    I completely disagree with this, having been through and still going through mom's day out, as I previously mentioned. I have read SEVERAL things that say when a child is more introvert, they will, in fact, cooperate in a group like setting. However, they will let loose and cry, throw tantrums, etc. the minute they walk through the door.

    The studies say that this is because they are so good all day, generally due to a sweet, introvert, and/or sensitive personality. They just need to "let loose" in an environment where they feel comfortable/safe....HOME!

    And, staying true to these studies, my son does throw tantrums as soon as he steps foot in the door (no kidding!!!) I try to divert his attention etc,,,and most of the time it works.

    Not sure if this will help any, but wanted to express my opinion/concern about the counselor comment that this behavior will be corrected within 5 days in a structured environment.

    While I'm certain it will get better in the longrun, in the short term, it presents much more of the opposite result.

    Again, Sweet Heather.....I wish you all the best, as well as Brent, "The Babies", and "Suga"
    You are constantly in my thoughts and prayers.

    P.S.S If you ever want to get your two together with my son, I would truly welcome it. He needs socilization due to his extreme sensitivity, mommy clinging, and seemingly introvert personality. It would be a pleasure to meet you again, I believe we've only met once, when you and Brent started dating. I live in Lafayette, so I could make a day trip to Lake Charles, without problem. In fact, I would love to see Lake Charles. I hear it is becoming even more beautiful, adding boardworks on the water etc.

    I was also friends with Jolie, a long time ago, and my most recent tie to you guys would have to be the Diely family. Meghan and I went to school together and worked at the YMCA for ages together, and keep in touch on a regular basis today :)



    KC

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