Genea has delays. She has delays in her development, in her speech, in her learning, in her physical abilities. We knew this when we met her, before we met her actually. So, not only did we expect it we have watched for it. Genea however, has had different ideas and has spent the past 3 years busting her ass to catch up as quickly and as thoroughly as possible. Regardless she has been sort of "on the fence". She has just enough sensory integration issues to be a problem. Just enough speech and language issues that she fit in with the kindergartners last year, but at the bottom of the range of acceptability. Fine motor deficits to make her handwriting atrocious but she always gets her letters in the lines. She is clumsy and knocks into things. She falls standing still, those sorts of things. Socially, about a year behind her friends. But always just toeing the line which cut off a delay from being an addressable problem. Never quite making it over the edge into an issue that might interfere with her academic learning.
So I knew and accepted, that Genea's issues separately were not going to raise any flags, although I always brought up my concerns at the conferences. Despite the fact that everything together presented a significant compounded problem, I was fairly sure the schools would not be lending us a hand. And the truth is I could have gone out and gotten her Speech Therapy myself. And Occupational Therapy, and a few social skills classes, and the rest of it. We didn't do it. We chose to focus on our bit instead. Our relationship as a family, our emotional bonds and attachments without racing back and around to therapists. It was a choice, a decision and a roll of the dice, to provide as much as we could for her at home.
I have gone into Genea's conferences with my fighting pants on, ready to insist on IEP (Individualized Educational Plan, generally for children who need special help) services and with threats all set to whip out, only to find she has been within the range of normal with her class. That she had room to improve but the gap between her and the rest of her class is not nearly what I would have thought. Part of it is I think, that she does the Miss Perfectly Perfect Girl shtick at school and I get the compressed result of 12 hours of fits that waited to happen at home in my 6 hours. With no major behavioral concerns, she does not stand out. Anyway, her speech and language is one of the concerns and I suggested a speech evaluation when school started this year. About three months in, the teacher noted a possible problem in her fluency. After the holidays the Speech Pathologist sat in on our conference to gently and delicately tell me about the "minor lags that sometimes maybe happen and sort of can hold things a bit to where we could benefit from some you know, extra time spent addressing it" (not an exact quote but you get the idea).
By the way, I realized that while I have a degree in Communication Disorders and can spot an articulation disorder underwater and from 4 miles away in another kid, when it comes to mine I don't hear it anymore. I can't, even if I try. I only picked up on some of Genea's speech hesitancies because it takes her so long to finish a sentence and she talks so much.
So the Speech Pathologist called last week to set up a meeting (May! It's May and I brought this up in September! Whatever!) to go over the results and discuss the findings and whether we will move into an IEP with Genea.
I did not feel happy about it. I discovered something.
I CAN INTELLECTUALIZE THE CRAP OUT OF EVERY NUANCE BUT WHEN YOU TELL ME SOMETHING IS NOT RIGHT WITH MY BABY GIRL IT FEELS LIKE YOU JUST KICKED ME IN THE GUT!!!!!
It was weird! Not only have I been expecting this, I have been waiting for it. In fact, I thought it would all come much earlier. I want her to get extra help in school and an IEP will help her to access it. So why did my stomach contract like I had just eaten a ball of styrofoam? I'm not even sure. I had a moment on the phone of, don't YOU tell me anything is wrong with her, there is nothing wrong with her, maybe there is something wrong with YOU, as I sit typing on my blog that I spent the past two years with writing about Genea's issues. Go figure. It hit me quick, and then the abrupt brick- to -the- gut feeling was gone. I'm left with a lingering sort of unease, a discord. I can't define it any better than this.
I can't begin to imagine how all this feels for you, I suppose it's one of those "I can say whatever I think about my own kids but don't you dare think it too".
ReplyDeleteGood luck with everything.
There are moments the reality of some issues hit me harder than the others. My son has moderate CP but it was his vision loss I grieved the most and protected...It's a mom thing is all I can say! Praying for peace and wisdom for you!
ReplyDeleteAs I former special ed teacher, I can totally relate. I'm always telling my friends how it's good if the school wants to put their child on an IEP - how they will get help for their kids - and if the school doesn't follow through they have something to back it up.
ReplyDeleteBut, the thought that someone could tell me that MY son would need something makes me want to cry.
I'm glad that Genea will get the help she needs - but it's still very hard.
It's just hard to hear from somebody else. Our Mama Bear instincts kick in. Perfectly normal for you to feel this way.
ReplyDeletePS I didn't know you're a speech pathologist.
PPS My youngest was in speech therapy, too.
It is similar to the feelings I had when they suggested a 1:8:2 class for neurologically impaired kids for MY GB! she has been receiving services since she was 7 months old. I KNEW there were significant problems, but I expected them to be handled the additional support in the class room. I grieve that her problems require separation from the mainstream. But when I heard it, I didn't really hear it until a couple of days had passed. {{{Hugs}}}
ReplyDeleteI know exactly what you mean. It is one thing to believe something-even to know it for sure-but it is something else to hear it from a professional.
ReplyDeleteMama Bear kicked in for sure. That's totally ok cause that's what you're supposed to do.
ReplyDeleteAbout 3 months into J's first school year here (kindegarten) I received a call from the teacher that she wanted to meet with me. Now remember that I was living through hell at home. I called G and told him I thought the teacher was calling me in to tell me J qualified for gifted program. HAHAHAHAHAHAHAHAHA!!!! Why on earth would I ever think that when I was struggling through every 5 minutes at home????
Um.....the teacher was NOT calling me for my fantasy. She was calling me to tell me J was a horror. (And they weren't seeing anything like me) Kick in the gut feeling.....totally familiar.
Hang in there - you'll figure out how this will all fit into your new normal, and then you can move forward.
ReplyDeleteI remember taking my son who is now eight in at age three because I was concerned that he had a speech delay. I'd been concerned since 12 months, but pediatricians just poo-poo'ed me. He was found to be communicating on the level of a 12 month old at age 3. And the speech pathologist thought we were dealing with more than just a speech delay. She refered us on and he ended up with a dx of autism.
I totally get the kicked in the gut feeling.
Now, five years later - I am amazed by my son and love the normal we have created.
I think it's grief. I think in some contexts, it gets in/out through little cracks and in that way takes us by surprise.
ReplyDeleteI request an in-depth speech evaluation at the start and end of every school year. I call and call and call and call and call and call and...you get the idea...over and over every morning and afternoon of every single school day until it is done. At our kids' school there are so many kids in speech therapy and the speech therapist only has a half-time position, so it is definitely a case of squeaky wheel getting the grease. Once I call enough, it happens. I learned to do this by making the request in September one year and the evaluation not happening til May!
My research indicates that kids uprooted from their native language, even if they spent as little as six months in their native language, can take as long as 8-10 years to become truly fluent in their adoptive language. For all those years, there can be various speech issues. They are often diagnosed as learning disabilities when in fact it's language acquisition stuff. We are seeing this in our younger son.
Bt said it for me, it is grief. We get used to our kids they way they are and we do stopp noticing after awhile.
ReplyDeleteThere are lots of things you can do to get her fine motor skill up that are sort of fun like beading with smallish beads and having her pick up fruit loops with tweezers, when she gets a boel she can eat them. Good luck with the IEP stuff
I totally understand. You're her mom and you don't want anybody criticizing you child. Plus, she has NO IDEA how had you've worked to get Genea to where she is today. You've moved heaven and earth to give her a good life.
ReplyDeleteI felt somewhat the same way when the gym teacher snagged my hubby during third grade parent-teacher conferences and expressed "concern" about Son #1's lack of "ball skills."
Never mind that he was (and is} a really, really smart cookie. Ms. Gym Nazi got all excited about the fact that Son #1 didn't give a hoot about playing softball or soccer or any other team sports that involved balls.
When she put him in time out a few weeks later for not knowing what wind sprints are I hunted her down and gave her the benefit of my opinion about her teaching skills. She was crying at the end of our chat and I was very pleased with myself. Nobody makes my kid feel bad about himself, least of all a so-called professional who is supposed to make kids like playing and getting exercise.
So yes, I get you.
BTW, Son #1 is a junior at P.rinceton, where he's on the swim team AND he was captain of the golf team in high school so Ms. Gym Nazi's dire predictions about him growing up to become a helpless, stumbling lump of inert flesh never came to pass.
.
I fought tooth and nail for Princess to see a psychiatrist. Then when I got it, I sat by the patio window and cried for an hour.
ReplyDeleteI ran out of my first IEP meeting (in the middle) in tears. That sucked. I don't think it ever gets much easier. It helps if you can bring a friend who knows the IEP process and can be an impartial set of ears.. they don't love your kid like you do and can hear what is being said without getting emotional (and make sure your child gets what they need.)
ReplyDeleteI fought with early intervention for three years before they would agree to do any more than the basic screening. Then when I got the pack of paperwork for the neuropsych eval I felt like a failure because it just seemed like I should have been able to do something to make it better so she wouldn't need any of the stuff I fought so hard for her to have.
ReplyDeleteVery similar situation with my dear beloved, Zhen.
ReplyDeleteBut, I don't think it is grief. With me it is just anger at the insensitivity sometimes shown. The sudden understanding that the people who are supposed to help you don't appear to be helping you. And furthermore, the gut-wrenching realization that they DO NOT LOVE your child. Otherwise, their entire approach would be different.
In my case it is more like I want to yell - YOU STUPID PEOPLE!!! Why don't you write me a letter saying that you've NEVER run across a more spirtually deep, profoundly thoughtful child, never seen a kinder, more generous more LOVING child in all your years of teaching???!!!! Note that he is OFF THE CHARTS for having a sweet spirit! Tell me he's made you cry with his poignant observations. LOOK AT WHAT MATTERS YOU DUMB HEADS! LOOK AT WHAT MAKES HIM GREAT! SPECIAL! A GIFT FROM GOD!
No! Instead I get a form letter (the standardized testing) pointing out that he is in some too-low-to-even-remember percentile almost every area. I wonder why they'd bother to send a parent such a communication. They could have saved postage if they'd just written on a post-it: YOUR CHILD IS A BIG LOSER. I mean, this is a SCHOOL. If a child apparently needs that degree of help, perhaps they'd also send some sort of assurance that he'd get it! Or, some communication that the test scores don't reflect the way he performs in class...or the number of the suicide prevention center - SOMETHING!
So while it sucks that other people had a tough time with being told their children need extra help, it totally makes me feel better that I am not the only one! I really thought I would be only relieved when the school people agreed Genea will need more attention. Really I did!
ReplyDeleteIt IS weird when your expectations of YOUR OWN feelings don't stand up to experience. I think that is really the point of your post!
ReplyDeleteWhen I was a teacher (pre-kids) I remember being so confused by the defensive attitudes of the parents, when I'd mention little things about their child "being behind on math facts" or "not doing homework". For all the world they acted as though I was accusing THEM of not studying or doing homework! Wow. I did NOT get it. It was only when I became a parent that I realized it IS for all the world as if the parent him/herself is being judged wanting.
And - here is my surprise regarding my own feelings - I feel PRECISELY the same defensive feeling for my adopted kids, AND the same feeling of pride and accomplishment in their successes. What do you know?
Lisa - you crack me up! I've had that experience, too.... The teacher says something like...."I have to tell you, I've never seen..." she struggles to find the wording so you are filling it in...."such a kind child" or "a boy with more spiritual potential..." and then she finds her words and finishes, "a child more reluctant to write." Sheesh!
ReplyDeleteThank you for the proper usage of toeing the line.
ReplyDeletealso have experienced the "if we note that something is wrong we'll have to do something about it so nothing is wrong even though you who live with the child might think so, we have letters after our names so you must comply with our laziness" attitude.
It is SO hard to have others point out what you're not seeing or don't want to talk about. I am an early interventionist - I work with kids under 3 and help parents work on skills and/or refer to therapists - and I'm the director of a child development center with LOTS of EI professionals) Yet if you look at our home movies you'll see that my son could not sit at 12 months, he's propped and held and positioned, didn't roll, didn't talk or sign - and I still feel badly about how I reacted to those who tried to tell me, and support him. When I was finally ready to listen, it was still hard---and now that's he's caught up with motorskills his preschool very delicatly tells me (you know somethings up when both directors are at the parent teacher conference) they are concerned he's not pronouncing specific letters (at 4 1/2) and after I finished stomping my feet - they're right- but I couldn't see it either. You would think I'd learn, but apparently the "not my kid" protective urge is just extra strong, especially for those of us who usually tell other parents about their kids needs.
ReplyDeleteIt seemed to me like I was detecting a little guilt on your part for not getting her private PT or OT stuff because you were too busy focused on handling the rages - which she doesn't show at school. If I'm right, and you were... CUT IT OUT!
ReplyDeleteFirst of all, you can't do everything, and handling the home behavior is most important for the sanity of you, your child and your family. Second, if your child has "borderline" issues, even if it's across the board, and you improve even a few of them, then good luck qualifying for any services.
My biodd has learning disabilities (genetic), but when we brought them up in Kindergarten we were told we were wrong because she could read. We told them that this form of dyslexia didn't effect reading skills and we wanted her tested anyway. Then we were told well all the Kindergarten test does is check for letter recognition (which is obviously not an issue), and nothing else would be checked until the 2nd grade test. So we said fine, she's reading on a 3-4th grade level, give her the 2nd grade test, and they refused. My mom is a teacher, with tons of experience with dyslexia (guess where I inherited it!), so she began working with my daughter. By the time 2nd grade rolled around, my daughter had learned to compensate enough that the school refused to test her. Admittedly now she's in 8th grade and doing beautifully... in all but math which is where our form of dyslexia gives the most trouble. *sigh* I tell myself even if they had caught it they probably wouldn't have been able to do much about it. Oops! That wasn't the point of my comment!
The point of my comment was, get them to see her with all her issues so maybe one of them will qualify her for an IEP. Once she has that she will be eligible for other services that may not be directly related to the qualifying one, but will help you out. My adopted daughter's small classes that she qualifies for because of her learning disabilities, greatly helps her with being less overwhelmed by school - which means she comes home less stressed out - which means fewer rages. I can talk about her emotional needs at IEP meetings and they have to listen and sometimes they make accomodations.
I do know how you feel about the shock of realizing your child needs services, even when you've been fighting for them. Even after being in attachment therapy for 2 years with my daughter I still was in denial about her having RAD. I'm still trying to come to grips with the fact that despite her coming so far, she will probably never be able to be completely independent.
Hugs and prayers,
Mary in TX
Boy oh boy, I get it about the pain. It is part of grieving, but shit. It hurts!
ReplyDeleteOne thing I think you need to be aware of. The school only does OT for academcially necessary activities. When you said that Genea falls over when standing still, that range a "needs PT" bell for me. She falls over 'cause she doesn't have her core muscles working well. For my son, that also meant he couldn't sit still at the table or desk, he couldn't hold a pencil well or write well. School may address her ability to form letters, but I'm pretty certain it won't address the underlying cause. His low muscle tone in his trunk was actually preventing his rib bones from forming properly and his chest looked deformed. See if you can get your pedi to write an Rx for a PT eval -- and if insurance will pay for it. (Medicaid in TX will). Then you can find out how serious the problem is and make decisions about ignoring or letting the school deal after you've got more facts. (And PT might just make some parts of life easier, like no longer having her fall on the person next to her at dinner time.)