Overwhelmed and Overwhelming

I feel as if I eat, sleep and breathe autism.  And lately, I guess, that's exactly what I've been doing.  Ever since Emerson's diagnosis Emerson was removed from Sts. Peter & Paul, I have been worrying about him, wondering about the future, dwelling on the challenges to come, frantically searching for answers, and pestering anyone I've ever met to ask for help.  Since his autism diagnosis on Dec. 20, I have searched through websites, scoured the bookstores, picked apart people's brains, and read a few books--with many more on my shelf waiting for their turn to be read.  And now, after the preliminary report from the occupational therapist, I feel even more overwhelmed.

[Side Note: I am not prepared to talk about the report from the OT yet, so don't ask.  She has a few more areas to test, but was able to get me a rough report for my meeting with the school board yesterday.  Let's just say it's more discouraging news piled on top of our existing discouraging news and leave it at that, OK?  When I've come to terms with it, I'll talk about it!]

It's overwhelming.

Even though I was expecting Emerson's diagnosis from Aucoin & Associates to come back as autistic, it's still a shocker...I don't care who you are.  It's not what you want to hear, what you hope to hear.  Frankly, you'd like someone to wake you up and tell you it's all a dream, or have a TV crew jump out at you and tell you that it was just a prank.  Instead, it has become your life and all those dreams for your child, your hopes for their future...well, they don't necessarily go away, but they do change. 

I no longer dream that he'll be able to read simple books by the time he reaches Kindergarten, I hope that he'll be able to be mainstreamed with as little help as necessary.  I don't dream about a big vacation at Disney World or an all day trip to an amusement park, I hope that our next birthday party doesn't involve tears, screaming, hitting, kicking or biting when we try to leave after he becomes overstimulated.  I don't dream of the day he'll bring home someone he really cares about to meet his parents, I just hope he'll be able to form real friendships...not just calling someone a friend because they happen to sit next to each other in class. 

The way you do things changes as well.  Instead of telling him in the morning that instead of going to little school (which is what he calls his day center) we're going to the dentist, I start talking about it a day or two in advance so Emerson has time to process it all.  Instead of taking our usual flight with two layovers and spending the majority of our day in airports and on planes, for our next flight home to Wisconsin we'll make the 2-hr drive to New Orleans so we can take a direct flight into the Twin Cities and then a 3-hr car ride to my parents' house (this seems more extreme as far as total travel time, but I don't have to deal with a possible meltdown in an airport during a layover or on a plane due to over stimulation from all the noise and commotion. Car rides mean we can make it quiet for him and we can stop as needed should he need a break).

It's overwhelming. 

It overwhelms me at unexpected moments, like today at work when I was in the back making my lunch.  I was thinking about how good my tomato soup was going to taste when, out of nowhere, a wave of utter helplessness swept me up and carried me off to the point of tears.  It happens frequently.... When I pick up Emerson from daycare and he proudly shows me the drawings he made--so simplistic compared to his classmates; when I'm putting him to bed at night and kiss his forehead and he tells me I hurt him; when I ask him to take off his pajama top so we can put his school shirt on and he's too busy reciting a book from memory to focus on what I'm saying and he ends up pulling down his pants and underwear instead; when we're out in public and he starts acting inappropriately and people look at us strangely; when I type something on this blog and I realize that I can never put into words exactly how I feel...that all words pale in comparison to the raw emotion; when I try to educate people and it hits me how little I know despite all my reading and how much I want to educate everyone who comes in contact with my son.

It's overwhelming.

And faced with our new challenges with the OT business...I don't even want to think about it.  What I do want to do is cry.  I want to sit down and sob for my little boy and for all the challenges he's going to face in life, for the judgements people have and will make, for the hopes and dreams I had for him which may not come true.  I want to sit on my pity-pot and feel sorry for myself.  And when I think of all the many, many people out there who face a lot more difficult challenges than those we face, I feel guilty.  And feeling guilty doesn't help matters because then I try to do more and I don't ask for help from my husband or anyone else; I don't cry on any one's shoulder...I keep it all bottled up instead. 

And I feel overwhelmed.

I'm trying to read as much as I can on the various subjects that relate to Emerson, but I've only actually gotten through 3 books with 5 or 6 more sitting on my shelf waiting for me to hurry up and read all ready!  (Keep your eyes open to changes made to the left where I will soon have two lists...a list with the books I've read so far and a list of the books I have that are waiting to be read.  I'll update both lists as their statuses change and as I acquire new books through my own searching or others' referral.)  I'm trying to search as many websites as I can find because so many offer a little different info than another might or might have it worded a bit different; the stores might offer different products or different ideas/activities.  (To the right are links to websites on the areas that concern Emerson--websites Jennifer suggested or ones that I found on my own through web searches or book resource guides.  Also listed are sites that offer tips and techniques on dealing with certain areas, stores that offer special needs products, and a list of what I refer to as "People In The Know"...people either on the spectrum themselves or specialists in the field. These will change as I find new ones and when I "reveal" the diagnosis from the OT.)  I'm contacting local autism societies, joining their member and mailing lists, acquiring calendar dates for upcoming workshops--two of which Thom and I are already scheduled to take, and finding about when support groups meet and whether or not play group or social skills groups have been formed for his age range. 

Upon a suggestion of Jessica's, I'm creating a Routine Chart and a Reward Chart to start using with Emerson...special ones that will be unique to him and him alone.  This involves planning the charts and creating appropriate rewards, what he will receive reward stickers for accomplishing, creating images to make his reusable "stickers", deciding what kind of routine chart would best suit him, finding images to cover the various categories, coming up with a workable design...not to mention actually making them both.  LOL  We're searching through organizations in the area to get him involved in activities we think he is capable of doing and will enjoy (one we found is like a soccer club, but they don't actually play any matches.  They learn the skills needed for soccer, but basically just go out and have fun.  We're signing up for that one this weekend.)  I'm trying to write on this blog as frequently as I can so I can define, discuss, and inform about as much as I possibly can--and do it in a timely manner so everyone has as much info they need to understand references I make or what I'm talking about as we go along...all without overwhelming my readers.

It's overwhelming.

Jennifer has written to me:  At some point, it will get easier.  You are in the initial learning phase and figuring out what services Emerson needs and where to get them.  Once you get through that you can start to get into a "normal" routine....  And Jessica has said, in reference to all the reading and researching I'm doing:  It's your coping mechanism.  It's how you're dealing.  They're both right, of course.  Learning is my coping mechanism and things will get easier.

 

I have said it before and I'll say it again:  Knowledge is Power.  By reading, researching, and learning I don't feel quite as hopeless...or as helpless.  I feel like I'm doing something to help Emerson.  Maybe it's really just a lot of busy work...especially the Routine and Reward Charts.  I mean, does he really need something so elaborate??  Maybe it's my way of avoiding the sad feelings that creep up on me when I'm not keeping busy with something.  I do have trouble with depression, after all, and the last thing I need is my own issues popping up when I need to focus on him.  Maybe I think that I'll become an expert and will make Emerson's life, and therefore our lives, a lot easier. And, really, isn't this every parent's hope when they have a special needs child?

 

But will everything I'm doing make a difference?  And why do I feel as if I have to do it all now?  Why do I think it has to be done immediately or our world will crumble apart?  Does it make a difference if I can't define all the terms right away to everyone?  Can't they Google something themselves if they're unsure of what I'm referring to or if they want to learn more than the info I'm providing?  Why do I feel responsible for presenting all the information out there that does or might relate to Emerson?  Why do I think I need to stay up until 11pm or later each and every night reading or writing or planning?  Will I miss something vital if I'm in bed by 10pm...or even 9:30pm?  Why do I feel the need to be at each and every appointment, and why can't I trust Thom to take some of that responsibility off my shoulders?  Am I that much of a control freak?  Or just that insecure in feeling that I'm not doing a good job as a mother if I'm not the one to take him to each visit?

 

I feel overwhelmed.

 

I'm running myself ragged, and I'm the only one to blame because I can't let myself--or make myself--slow down.  For once I agree with my husband...I'm trying to do too much at once.  But how can I stop?  The few times I have tried to get to bed early, I lay there wide awake thinking about what I could be doing, what I think I should be doing, and I feel frantic; I think about Emerson's once-upon-a-future and his might-possibly-be-future, and I feel like crying; I think about Holly (whom I will introduce you to soon...Hi Holly! *waving with both hands*), the posts I've read on her wonderful blog--so many of which I want to talk about here--and what an amazing person she is, and I feel inadequate; I think about Suzy (Hi Suzy! I still owe you an e-mail)  who reached out to me with questions and concerns of her own, and I feel the need to provide even more info to help her find a direction in which to seek help; I think about friends and family and how they don't have to deal with what we're dealing with but might have other problems, some even more difficult, and I feel as if I don't have the right to feel sorry for myself or the right to complain; I think about the school system and how unwilling they seem to help and how difficult I've been told the Lafayette Parish School System is to deal with, and I feel angry; I think of the huge amounts of money we're going to have to try to come up with in order to pay for Emerson's therapy, and I feel incredibly afraid; I think about my preoccupation with Emerson's issues, wondering if I'm neglecting Parker in some way, and I feel very guilty; I think about all that is yet to come, all that I still don't know about, the uncertainty of what the future holds for us, and I feel scared; I think about the therapy, the training, the extra attention and needs Emerson will have and, while I would do anything for this little boy, I suddenly feel very weary.   

 

It's overwhelming.

 

But I can only be who I am, and this is who I am today:  a mother who worries over her both her children's futures, a mommy who wants to help them as much as she can with whatever she can, a life-long scholar with a hunger for knowledge that is never quenched, a control freak who needs to know the who what when where and how, a perfectionist who has to be tip-top or wallows in the depths of failure, a sharer of information with a deep need to provide others with knowledge and understanding, a worrier and a fretter who freaks out easily about the little things but can usually take the big things in stride, a woman who is going to keep trudging along even if it means wearing herself out because she needs to provide her sons with the best futures possible.