So I’ve been pretty overwhelmed with dealing with The Boy lately. I have been so torn, balancing my need to write my thoughts about it, and respecting his right to go through his struggles privately. Some days the hurdles seem so great…the obstacles insurmountable, that I want simply to crawl back into bed and pull the covers over my head. I get the impression that he sometimes feels the same. Although we have had these challenges all along, the diagnosis…the words Asperger’s….Autism…are still new. In some moments I feel relief. Relief that we have finally gotten the proper diagnosis - a name for the dragon we have been battling for so long. Come face to face with the enemy. Only to have to come to terms with the fact that it isn’t really an enemy after all. It is The Boy himself. If the Asperger’s were to disappear tomorrow, The Boy as I know him would disappear along with it. The pervasive in Pervasive Developmental Disorder. Asperger’s Syndrome is not something The Boy has…it is a part of who he is.
But strangely, even after dealing with these issues for years, upon diagnosis, I find myself moving through the various stages of grief. I seemed to skim right through denial. We have been through too much to even entertain that. Now I spend my time bouncing around between anger, bargaining, and acceptance, at a frenetic pace at times…like a pinball. I see acceptance on the horizon, then a neighbor talks excitedly about signing his son up for football…and PING! I am angry once again. I don’t want to stay there, but I get the feeling that I must let it work through. I must allow myself that anger to move on fully to acceptance. But it is tiring being angry, and I don’t have that energy to spare. I need every bit of that energy to keep myself afloat….and to hold The Boy’s head above water. And so everyday I tread water in this way. And when I am angry, or lose focus, we slip under…and it is quiet, still for a moment. Then the flailing begins and we struggle back to the surface gasping for air and continue the paddling. But there are days that we don’t just tread water. Something clicks and we swim forward together with long, reaching strokes. I live for those days. They give me the strength to keep treading, glancing back over my shoulder at the distance we were able to travel.
We haven’t had one of those days in awhile, it seems, and I feel like I am failing. Spiraling down and pulling The Boy with me. I can’t get into a groove with homeschooling. His schedule goes wacky. I am not sleeping. He is not sleeping. If I could…just…get…back…in …..control. I am his mother, his teacher, his example, his mentor, his confidant, his life preserver. If I can’t stay afloat, how can he? But sometimes I just can’t do it. I just can’t. And I am ashamed of myself for not being able to pull it together. And I scold myself and demand perfection…or maybe just improvement. Something. Anything. And eventually, I pull out of it and refocus and the cycle begins again.
Right now I am exhausted…and waiting…please let me find the strength to begin again.
11 responses so far ↓
1 // Apr 6, 2007 at 9:02 am
Sending you empathy, love and positive energy. Your descriptions of your feelings and your experiences are heart-breakingly beautiful. Thank you so much for sharing them and please know that you are not alone in your struggle, even though that is a trite-as-hell thing to say.
Thinking of you and the Boy.
2 // Apr 6, 2007 at 9:22 am
wishing you strength - and sending you understanding.
3 // Apr 6, 2007 at 12:15 pm
Hang in there…
4 // Apr 6, 2007 at 3:12 pm
I know it’s hard when you’re in a stage like this, things never look like they will change, but they will. You’re determined to help and this will show in the end.
I’m sending sleep vibes yours and the boy’s way because things are always so much better after a good sleep. You’ll make it and he’ll make it.
5 // Apr 6, 2007 at 3:54 pm
At my final assignment as school principal, I was fortunate to have known many great kids enrolled in a particular program at our school — most of them are kids with Asperger’s. Amazing kids, amazing teachers, and a most humbling experience to observe their day-to-day interactions with one another. You express yourself so eloquently. Your son is lucky to have you by his side taking those “long, reaching strokes” together.
6 // Apr 6, 2007 at 6:46 pm
I’m so sorry. Although you are strugging, you are still doing more for your son than you know. Better for him to be with you who loves him, than in school.
I’ll be thinking about you guys.
7 // Apr 6, 2007 at 10:27 pm
I found you through The Boy via Yeti-guy. There is hope, we all have moments, even in the best of times. My last BF was diagnosed with Asperger’s in late childhood. His mother would cry when she would drive by the schoolground and see him examining a fencepost instead of playing with other kids. He did not learn to read properly until he was 9. Now at 27 he is an amazing person, can read and thoroughly grasp books that are way over most people’s intellect level, 4 or 5 in a week. He can talk to anyone about any subject. It’s quite impressive to know where he was and see what he has become.
Kudos to you all for homeschooling, it is a huge challenge but you seem to be doing it right, judging from The Boy’s interview skills!
8 // Apr 7, 2007 at 1:04 pm
Mel, you brought tears to my eyes. I have no idea how you feel and cant pretend I do, but I know that the only way to find rest is in the Lords hands! You are such a strong woman, mother & wife and He can only make you stronger. He is the only one who really understands what you are going through and can give you what you and your sweet son need! I know you hear it all the time, “lean on the Lord” but He will cary you if you need to be! Dive into the Word, anywhere, everywhere! Read Psalms or even better read Job to know that God has you in His hands and every thing your going through is going to be used some day. It may be to help another mother who goes through the same thing or it may be to help your sweet boy understand things when he is older.
We love you so much and hope that you know your awesome family is in our prayers!
Always remember this!!!
I can do all things THROUGH CHRIST who strengthens me.
Philippians 4:13
9 // Apr 8, 2007 at 6:57 am
Sending you strength…and thinking of you. Hang in there.
(And. Off topic? I tagged you. I know…I’m sorry…I couldn’t resist.)
10 // Apr 10, 2007 at 10:20 am
They thought I had Asperger’s Syndrome or some other type of autism when I was younger, because I just acted different and my ears were very sensitive and other things. Now though my official diagnosis is ADHD.
When I was a kid and didn’t have a diagnosis, I just thought “What’s WRONG with me?” I still think that sometimes but the good thing is, a diagnosis can open up new avenues. You can find other people who are going through the same things you are, you can learn about different survival techniques that work for many people, and you can also be assured that you were born with this, and its not your fault or some failure on your part! At least, thats how I felt.
Good luck!!!
11 // Apr 12, 2007 at 11:05 am
Wow, I am so moved by your honest and creative expressions. You are an amazing woman on an incredible journey. Just so you know, from my limited perspective, I think you are doing an amazing job with Matthew. I have seen progress and a positive shift in his outlook on life. After each time we meet I am filled with awe and respect because you have committed your self, your life, your intelligence, your creativity, your hard work, and your guts to helping Matthew. He is an incredibly blessed boy and he is going to have a better life because of YOU.
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