The Ache of Perfection

Friday, August 24, 2012

I've been putting this post off for a while... a few weeks, actually. I havent been able to sit down and air out my thoughts (and havent wanted to find the time either). Articulation just isnt coming to me. I havent really spoken to close friends because I havent had the words or the answers to the questions that are sure to come. In so much, I just dont know. Part of that is not knowing where to begin.

For six months, Bobby has been getting therapy through the Early Intervention program. For no cost to us, a Special Instructor (SI) has been visiting on Tuesday mornings for an hour to work with him on functional speech, verbal possession (i.e. 'this is mine' versus grabbing at a toy that was taken from him), and expressing refusal (i.e. 'no', 'dont', etc., since he wouldnt refuse). Six months ago, we had a child who rarely spoke; now we have a soon-to-be preschooler who sings and has a vocabularly (albeit smaller than the average 3 year old). He will say no or refuse things he doesnt want, and that has gotten better in the last month.  He's still struggling with possession, but we hear things every now and again. While he used to turn to his fists as a first resort when things werent going his way, he makes an attempt to use his words or get help first (most of the time). But he's still struggling and we are a far way from finished with the journey.

On his third birthday, Bobby ages out of EI and his therapy needs would be handled through the Intermediate Unit of our county (IU). We'd been told by other parents that the IU were a completely different can of worms, and our EI team had told us to not expect "warm and fuzzy". Whereas EI comes into the home to help the family unit and to help parents help their child, the IU is a teach-to-the-test, focused group that's basically there to get a young child ready for kindergarten (or an older kid up to snuff for their grade level). From that background alone, I wasnt excited about the meeting, but Peter and I decided to give the IU the benefit of the doubt. After all, it's the therapists who really make the difference and therapy isnt inexpensive.

So, we went... And the 'one hour eval' scheduled at 9:30 (for which we had to arrive 15 minutes early) that became 2 hours and had both kids ready to eat the car by the time we loaded them in. Other than the OT (occupational therapy) evaluator, who I thought did a great job, I wasn't impressed. The SLP (speech language pathologist) who came off as a bit cold although I thought she was competent and I down-right couldnt stomach the SI (special education instructor/special instructor).  Really, really, really didnt care for her. It didnt even feel like she was trying. Comments like "your son has problems" (are there folks who come here because their kids arent struggling in some way???), "your son is violent" (this was said when he was scared because the SLP had boxed him in with a wall and he was trying to get away from her; he has a nervous fidget where he tries to bury his hands in my hair and, yes, it hurts because he's pulling it, but it's a quest for solace, not a violent tendency, and this is what he did when he finally pushed behind her chair and got to me), "you need to take him to a psychologist right away" (while this is an okay recommendation to make, the tone with which she made it and the implications she made while she was making it the first of several times were off the mark).

The appointment was awful. (Awful enough that, when I was relaying it to his current EI team, our case mgr told me that she would be lodging a complaint- her second of the week- against the IU). Peter and I had debated not going to the meeting and canceling, and just seeing how the first few visits to preschool were, but at the urging of his current EI therapists, wanted to give it a go. Afterwards, we were wishing we hadn't. He was upset and off the rest of the day, and I'm still in a place where I feel upset about it. I'm sad to say that I've been eating when I shouldnt, cant find the energy to run, and just feel like whatever patience I had was used up yesterday every day. Even vacation last week was rough.  You wouldnt think that something like this would cause such a downward spiral for mom when, really, it's Bobby I'm most concerned for. But it is. And I feel like I am sprialing out of control. If not for my cross country kiddos, I dont know that I'd find the motivation to run at all (which is sad, considering the MCM is only 2 months away).

We opted to schedule (and pay for) a private evaluation with a SLP who is local and recommended by other community organizations. She was great and I thought she got a good look at Bobby, waaaayyyy better than the IU. He didnt participate in all of her evaluations, but, as I'd expected from the IU, she used non-standardized ways to measure his skills.

I got the report tonight. And it's killing me.  Just killing me.  Peter reads it with a positive eye, and I'm trying to get on board. Maybe it's the IU tainting it, I dont know. What I do know is that she believes that while is articulation is age appropriate, she feels that "Bobby is exhibiting a significant receptive and expressive language delay."  For that, she recommends twice weekly speech therapy. To pay for that out of pocket in our area is anywhere from $200-$300 for two hours a week. That alone, when I think about adding it to the cost of the 2 morning/week preschool boggles my mind.

To add to this, she agrees with the IU that he be evaluated by an educational psychologist or developmental pediatrician because his eye contact is inconsistent, responding to his name is inconsistent, he still utilizes self-talk/jargon/twinspeak, his skills are inconsistent (i.e. his language is delayed but in other skills (numbers, letters, spelling, etc) he is far above age level), he has practically no two-way conversations with anyone other than his sister unless he's prompted, and he will show physical aggression when he's frustrated.  These are issues- I know this. I'm not trying to sugar coat them. It's not great.

My breath catches in my chest. There is an ache that I cannot adequately express.

There is one truth that comes above all other and one that I tell Bobby in his darkest moments and on his brightest days. He is perfect. He is my perfect son and I never want to do anything to change him because he is perfect the way he is. (The same goes for Maya.) I count my lucky stars every damn day and thank God for the absolute miracle that my children are. I know I'm lucky. I know that things could be a lot worse. I know we could be battling medical battles and death. My children are precious and perfect and make the world make sense to me.

That being said, in all their perfection, it is my mission and my responsibility to make sure that they have the best of everything that I can, and that they have all they need to attain the dreams they reach for. If they want the moon, then I want to teach them to weave the lasso that pulls it from the sky. If they want to move mountains, then I want to show them how to build the strength. If they want to run circles around the world, I want to cheer them on from the track they practice on.  Bobby needs some help, and I want to make sure he gets it.

My son is shy. He doesnt love new situations and he takes his time warming up to new people. But he is one of the most empathetic people I've ever met. He will lay on the floor next to a crying child and try to get them to laugh. He will give you a hug when your heart hurts. He will smile and sign the ILY sign while saying, in the sweetest voice possible, "I love you", and you will have no choice but to let his sunshine warm your world.

My son is frustrated and tempermental. (And he gets his Irish temper from me.) If he is misunderstood or not understood at all, he loses his patience (like his mother). He will reach out with his hands instead of his voice and inadvertently hurt (although this is something he seems to do with those closest to him, like us and Maya, because he tends to not use hands first on the playground or with most other kids). He will pull hair or kick or hit and at times, the only thing I can do is wrap him in my arms and legs and rock, whispering that I love him, that I've been there, that I understand... That it will pass and he will find peace again. It hurts- to know that you cant fix it, but only hold him until it passes (and hope that it will pass soon). 

My son is sweet and soft and heartbreakingly empathetic. He will cry with you. He will hug you while you cry. He will make you laugh when you want to cry. And, when he knows that he is the source of your hurt, he will weep and hug you and apologize with the things that his words cant spit out. Sometimes that hurts just as much as holding him through it... the knowing that he knows... that he realizes, once it's over, that he was the cause of someone's hurt... seeing that knowledge in his eyes and that hope that his penitence will make it okay... that you will still love him at the end of the day.

My son is my son... He is perfect and wonderful, and he is struggling. Two weeks until preschool and I am terrified. Utterly terrified. What if he gets to preschool and is pegged as a troublemaker or a 'bad kid'. We'll speak to his teacher about his struggles and concerns, but that's not going to make up for him if he has an episode in class. Maybe he will suprise us all and become a natural; or maybe not. I dont know. I dont want the experience to do more damage than good.  Most of all, it's these words from the independent SLP that have me feeling sick to my stomach: "I do have concerns about Bobby going to school without support.  Of course I can't say for sure, but based on my observations and your input, Bobby may need more services than just speech and language therapy."

He turns 3 in 2 weeks.... 2 weeks until school... 2 weeks until things go well or go to hell... I dont want him to hate school because he is struggling without support or because he feels like no one understands him and he cant explain to them what he needs. But we've already been told that, due to the IUs vacation the entire month of August and his early September birthday that getting support by the start of the school year (the day after he turns 3) will be damn near impossible. His EI services stop completely the week before... Do we play it by ear for the first few times, which is what Peter thinks we should do, and ask his teacher for her thoughts?

One of the things that drove me up a wall at the IU eval was that the SI basically danced around "autism" at every corner. Practically any comment about seeing a psychologist was followed by 'because only a psychologist can diagnose if he is autistic'. In the days following that, I've reada all sorts of books on autism, PDD-NOS, sensory issues, and speech/language disorders.  And I'm feeling lost.  I've talked to special education teachers, special ed teachers who've had interactions with Bobby, and his therapists.  And I still feel like I'm not sure which way is up.  There are no easy answers, no one to take this and fix it in one easy swoop.

There are few things I know for sure. The first is that I love Bobby for every single thing that he is, that he isnt, and everything in between, and that he will always be perfect to me.  The second is that I'm coming apart beneath the surface and it's only a matter of time before the seams start to shred where those who arent the closest to me will be able to see and I have to get a grip: my kids deserve better, my husband deserves better, and I sure as hell cant advocate as Bobby needs (or will need) if I'm an internal mess. I havent been able to really talk to my friends because I cant find the words. I havent been able to blog because the words dont come; it's only thanks to some wonderful posts recently, by folks like Angie and Are We There Yet?, that I've been able to write this post. And it's been days in the making.  I just havent been able to do it.

Pray for us... Keep us in thought... Share your stories...  I know that we are lucky and that things could be much worse, but that knowledge doesnt keep the guilt of knowing that part of this (perhaps all of this???) is due to the fact that I wasnt able to gestate them longer and, therefore, is my fault in some way.  That knowledge doesnt wipe away the nagging questions of what didnt I do or what could I have done differently or better.  And that knowledge doesnt help when we are trying to give Bobby all the tools that he needs to succeed. Luck is only one piece of the puzzle; right now, it's the other pieces that arent falling into place.

I know that I have to grab the guilt by the horns and throw it into some pit somewhere. I have to. Otherwise, it will consume me until there's nothing left but it. And the guilt isnt going to help Bobby (or the rest of us).

It's just hard right now... Really hard.

Of course, no one said life would ever be easy.

17 comments:

Andie said...

Michele -
Even though we've drifted apart I hope you know I love you. You are such a breathtaking human being, so fierce and loving. And your writing is so amazingly skilled and moving, You simply must publish all this someday. I consume your posts! You will be a best seller. I felt so bad this week? last? when I was arriving at work and rushing to some crisis in the lab and didn't have time to speak to you at length. I spoke hello to Maya and then Bobby came running in and you gathered him up in your arms and he started pulling your hair relentlessly. I realized conversation was impossible at that moment for you, and I remember thinking, oh my God, what it takes to be a mother!! I was thinking what kind of strength of character and love it must take to endure the intense discomfort I could tell you were in. And you were so patient with him! I just knew in a million years I couldn't do it. Later on, after the lab crisis was resolved, I realized you hadn't stopped in to chat. Your post explains a lot. My Dear, you are the best parent Bobby could ever have. No one could love and appreciate his presence in this world more than you. Throw that guilt away. You are a loving, giving, whipsmart mother. Bobby and you are going to be just fine.

Glenda Aldridge said...

Michelle, I wouldn't be able to imagine how you feel or understand what you are going through if you weren't as articulate and honest as you have always seemed to be. With Nadya being born a few weeks later gestationally and just 3.5 months younger than Bobby and Maya and following your journey since Nicolaus and Sophia, I feel I "know" you in a close motherhood way. Your journey has helped me on mine. As I sit in the hospital fighting at 29w2d for this child, a son, due to blood pressure, knowing it could change to life threatening for him or me at any labwork or urine protein and I hear you in this fight for your son, who we understand to be a MIRACLE of God, a blessing, and know you want to do EVERYTHING you can to make his life the best you can. You have always done that for all of your children, even though your physical body didn't cooperate. I will pray for you, Peter, Maya, Bobby, and the evaluators and care givers you will need to meet with. God be with you!

sonja said...

We must talk. I have been having the exact same experiences with Liam and to some degree Jude. Two of my friends with triplets (each have 2 girls, 1 boy) have the exact same experience with their boys. We are thinking of getting all our boys together to observe them and compare ourselves because none of us believe what EI and IU are saying. Yes, something isn't quite "perfect" (when compared to our super social/vocal girls) but we are starting to think it's a boys (especially within a set of multiples) thing. I hear the word autism thrown around everyday and it is heartbreaking but I also know that my gut tells me that isn't right. You are NOT alone, my dear. I could've written this post. *hugs* Hopefully we can catch up soon.

Amy said...

Michele,

I have not posted a comment on your blog since you were pregnant with your twins, but this post compelled me to reach out to you. I have a son who also had trouble speaking, and after his second birthday we started speech therapy and evaluations, just like you. The more therapy we received, the less we seemed to know about what was going on with our child. We didn't believe he could be on the spectrum because he craved approval and social interaction (but, we later realized, only on his terms). It took us two years before we finally received (and accepted) a diagnosis of PDD-NOS.

I don't know if this is the road you're on, and I pray for you that it isn't. That being said, the thing I can tell you as a parent of a child on the spectrum is that the earlier and greater the interventions you do for your child, the better the outcome. Our child entering the public special needs preschool system at age three (we were in Ohio at the time and our Birth to Three services were spotty and inconsistent) was the beginning everything wonderful for him. He ended up going five days a week, full days from age 3.5 to 5. I know that sounds like a lot, but it is what he needed to learn the skills to be a part of the world. We supplemented with outside speech, occupational and physical therapy. It is horribly, horribly expensive. I would watch my friends take vacations and do all sorts of things while we worried about groceries.

But now, my son is ten. He is in a mainstream classroom. He no longer needs an aide. He is on grade level in all subjects. He is a funny kid who endears himself to just about every person, child or adult. He is amazing. And I honestly don't know where we would be if we hadn't thrown everything but the kitchen sink at him starting at age 2.5.

I would love to email or talk to you if you want. I remember that scary feeling of those first evaluations all too well. It is a lonely, scary, awful place. But you're not alone. I'm thinking of you.

Amy
asprimorac at gmail dot com

Trennia said...

I have not experianced "all" of these issues,but my oldest "now 18 years old" would hit,pull hair,have trantums and meltdowns.
Mainly around the ones closest like me,dad,siblings,and any friends that were close.As she got older she got more violent I took her to doctors and they wrote it all off as normal,but when I took her to a psychologist at age 12 things started to get better,then down hill again soon as in home therpy was over.I have had to call the police and that is so hard but you get in the situation you don't know what to do and you have to protect your other children/family.She has stayed in bavioral hospitals sometimes 3 days to aweek and it is hard and it breaks your heart,but you know deep down you have to get the help they need.Finally when she turned 15 she was dianoised with OCD,ODD,Bipolar,and ADHD and has been taking modd medications to help and I hate having her on medicines BUT it does help I see the differances.It's like going through Hell to you see the light with medications.I am not saying this is what is happening or not with Bobby I am just letting you know that you are not alone with Not knowing what to do.If you need to vent feel free to email me I'm here.I have dealt with my daughter having so bad of outburst to being the most loving child.I use to set and cry so hard it made me sick now I thank God I found the help she needed.Now that we moved "almost a year ago" she is seeing a different psychologist,but still on same medicines...but he seems to thank her bipolar is mixed with personalty disorder.It is hard to please her :(
You can buy her a burger sometimes and if it's not just right she will not be happy, or she just has to have more and more clothes because it's never enough.We are working on that even at age 18.I am not going to lie to you it is Hard,but hold tight to Jesus and He will give you strength.(((hugs)))

Catherine W said...

Oh Michele, I feel for you. Jessica's speech was similar to your description of Bobby's, this time last year. It's so worrying and I am in the same boat, panicking about her starting at school next week when she is so very young. I'm also worried that she will be labelled as a trouble maker or a naughty child.

I simply cannot believe what the SI said. Honestly. What horrible and pointless things to say.

And no matter what the issues, they are absolutely perfect to us. We would never want to change them but we do want to do everything we can to help them.

Wish I could teleport myself over to the Philadelphia Surburbs today to have brunch with you and give you a hug.

Queenie. . . said...

You are a great mother. You could have gestated to full term, and you would have still had an issue of some sort that would have made you stress and feel guilty (we all have them!!!) You know as well as anyone that there are no guarantees in this world, so stop beating yourself up that this has anything to do with you. (and really, it's not exactly like you were smoking cig's and snorting heroin while you were pregnant!!). Let go of the guilt. And know this: Bobby will be just fine. He is only (not even!) 3. You are aware of his needs. You are on top of his needs. You will help him be the best possible Bobby he can be. And he will be a really great Bobby. He already is.

Sprogblogger said...

Oh Michele, I'm so sorry you and your family are having to deal with such hard things. I don't have any advice on the behavior or the specialists, or even on therapy in general, but it sounds like you're having a hard time dealing with your own reactions to all this?

I agree that you need to be at your best to advocate for whatever Bobby needs, and I just wanted to chime in and say--in the midst of all this, appointments for Bobby, please make sure you're making the time/space to take care of yourself. However you need to do that.

Whether it's paying strict attention to diet & exercise, or whether finding a professional (preferably a therapist with experience dealing with families with these sorts of difficulties, so they know exactly what you're going through)--please make sure you're finding a way to help YOURSELF through this, as well as your son (and your daughter and your husband, of course.)

Thinking of you, and hoping that things ease up a bit so you can catch your breath and get your feet back under you (to totally mix some metaphors!)

Ashley Largent said...

This is going to sound kind of funny, but it is my full term child that I am having problems with. (Our of four children he is the only child that made it past 36 weeks). My other children had started talking (simple mama daddy bottle) words between 9 and 12 months. By 18 months with the older three children they were speaking in sentences. My two year old, who was due in December of 2009 (I think we were in a couple of groups on Cafemom lol) She speaks better than most kids that are 5 and 6 years old. But my 19 month old just doesn't speak very much at all. I had him evaluated at 12 months old, because I was extremely concerned with him not speaking at all. He came back as being severely delayed on his speech, but he understood and followed directions so he didn't qualify for Early Intervention. During this time, we were planning a cross country move (that didn't happen due to alot of unforeseen circumstances) and on a whim us moving to the beach (Myrtle Beach, SC). We have been here since the middle of June and just in that time, his vocabulary has increased three fold. He has literally gone from speaking one word and signing three words to speaking 20-25 words and signing 5-8 words.
I feel that the amount of stress that my husband and I was under was effecting him. He is a very compassionate child also and seems to be in touch with the feelings of everyone here with him.
I tell you all of this, because I understand the heartache of watching a child who wants to say something and not be able to tell you. A few weeks ago Braeden woke up in the middle of the night and laid in the bed with me and wanted to tell me something so bad, and instead he got mad and started smacking himself. I just like you just wrapped him in a huge hug and told him everything was okay, we would figured it out. Everything is going to be okay, Bobby will eventually find his words and will be speaking in Shakespearean monologues soon. And I am sure that you know, that until then continue encouraging him. Positive reenforcment goes a long way! And if you ever need to talk feel free to email me!

Baby Smiling In Back Seat said...

Michele,
I'm so so sorry that you and Bobby are dealing with all of this.

As I think I've mentioned to you I was very unhappy with Tamale's EI therapist (an OT). However, I stuck with it and paid for a private therapist on the side because I wanted to stay eligible for services. I was not proactive about complaining or getting transferred away from the EI OT, but in retrospect I would have made better use of their internal channels. So, I'd suggest that even if you pay privately (which I think is best if you can possibly pay for it) you also work within the IU system and get whatever you can from them, just supplementing privately, and fighting to get therapists that you trust (and staying far away from that awful SI).

You didn't mention your pediatrician. Personally I'd call the ped ASAP, and preferably go in to discuss. At the very least, s/he can recommend therapists and a course of action.

I'd also call the preschool teacher and director ASAP to discuss all of this and also to get their input. After Tamale's yucky EI OT went to do a school observation, the teacher told me that they'd encountered her several times with prior students and each time had convinced the family to switch away from her in favor of a different therapist. The teacher and director may very well have experience with both IU and private therapists that they can recommend away from or towards.

We're all here for you.

Michelle said...

Sorry you're going through this but I wanted you to have some insight from an outside perspective. I'm pregnant again at just over 15 weeks and I remember you had to be bed rested from 12? 13? Really early on. You did everything and anything required of you, gave up your job, your mobility, for months! If I had to stay in bed that long, depression would have gotten the better of me. This being your fault because you didn't gestate them long enough, I don't think that's a fair comment. It seems easier to blame yourself sometimes but it's just not right. Secondly, I'm an optometrist and occasionally children with visual problems also have language problems/processing problems which we refer on. Kids treatment does not have to happen by preschool. There is still time to observe, and I think Peter's logical mind over the motherly-protective mind of yours might be the way to go in this one. In developed societies people are too quick to label children with autism when they're just shy, with ADHD when they're just active. And it's not like I don't believe in modern science, I come from a science background. But sometimes kids just need to be kids and grow and develop at their own pace. My son will kick up a stink if he doesn't get his way either but I'm not rushing out to get him medicated. He may be labelled as the school bully when he starts school but I don't think so. Like your son, he's extremely compassionate and will cry if a cartoon character dies. I think we don't give ourselves enough credit as mothers to accurately read our children's abilities. Our children will grow up how we predicted I think. Just perfect.

reba alice said...

michele, so sorry you are going through this. a couple of naomi's pals at preschool are "on the spectrum..." one with PDD (he's very functional, highly engaging, but also not great at communicating) and the other (whose mom i don't know as well) who i know is autistic but don't know details (this is the little boy who i did a post about last year--very low-functioning and non-communicative). i just wanted to tell you that both of them are in preschool (private) without aides and they seem to do just fine. even alec. you are a very good mama for taking care of this now and getting bobby the help he needs, whatever you determine would be the best thing for him and your family. {hugs}

Brigid said...

Life isn't easy. It's so freaking hard sometimes. I can't imagine going through some of the experiences you've had, but you and Peter are seriously living proof that nothing worth having is easy (I hope that sounded like the compliment I meant it to be!)

Hillary said...

Hi Michele, sorry I missed this post on my blog roll. I'm just now coming over from LFCA. I truly know how scary and frustrating all that this can be. (remember that email we exchanged a while back about my son graham and his adhd and learning disability diagnosis...). Bobby sounds like such a bright child. I know this old adage sounds corny, but don't count your chickens until they hatch. Could there not be any possibility that the results were skewed at both places simply by his shyness factor alone? If he's holding back because being scared of strangers (like many almost 3 year olds)how could they ever get true sense of what Bobby is capable of?I would think that they would want to visit with him multiple times and really get to know him before coming to any conclusions.

Much love to you! Please email me anytime if you need to talk!

xoxox

gwinne said...

Oh, Michele. I'm so sorry.

I have a good friend who has twins, also premature, who were born right around the same time as yours. I often think of you when I see them. I hope you can get the help you need for Bobby to thrive, regardless of diagnosis. What a scary time for your family.

Barbara said...

Dear Michele
I have no sage advice to offer but I do know that Bobby has the very best parents to help him along his road, whichever way it goes.

Oh maybe one teeny bit of advice(!): Beware of labels and beware of "should be"s Bobby is utterly and entirely perfect.

xxx

areyoukiddingme said...

Here from LFCA - I'm sorry that you're dealing with these obstacles. I don't have any personal experiences to share with you. However, I will pass on what I've learned from others. Don't be satisfied with whoever they stick you with in the system - if they are not acceptable, keep going up the chain until you get someone to listen to you and assign you someone else. And if you can't get someone else assigned, make it clear that their resources are inadequate. You can't change the system by remaining silent...and whether or not your boy has to remain in the system, it obviously needs some change. So, if you feel guilty for something, maybe you can alleviate that by making the system better. While I know that it's useless to tell you that you shouldn't feel guilty about anything, I'll do it anyway. I think you have gone above and beyond to create as perfect a life as possible for your family, so guilt has no place there. Much luck...