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.