Conversations with kids

Ok, not what you think unfortunately.

I wish I could say that this post was about some cute conversation I had with one of my kids. But it's not. This conversation was a bit tougher.

I made the decision last night to tell both boys about M's situation.

I had two reasons, really. The first is because I think not knowing is causing tension between the boys. The older one will tease M until he is absolutely stressed out. And more and more I hear the same phrase when he gets to that point - "You don't KNOW ME!"

And it breaks my heart a little bit every time.

The other reason is a guy at a client's office. He's sort of a misfit. He's young, and it's his first job. But aside from that awkwardness, there's this obvious social awkwardness as well. For one thing, he doesn't seem to "get" personal space, and drifts in way too close when the conversation interests him. And he doesn't "get" hints. You have to explicitly tell him what you want him to do. And be careful what you tell him because he follows the instructions to a T. And he's sweet so everyone's still good and kind to him. But there are laughs at times. Not in a mean-spirited way, but still. At. Not with....

I don't know if he's an Aspie or not, but he could be. And that could be my son in 10 years.

So last night. I sat my boys down and explained to them as best I could. And it seemed to make sense to the
 older one. Like puzzle pieces coming together. M doesn't quite get it...

But now they know. And I've asked big brother to love, protect and support M now that he knows.

I felt crappy to have to do this. I feel very unsure and very much in doubt over this whole thing. Sometimes I just have dread in the pit of my stomach. Especially when he's "sad".

I know I'm not a bad mom, but I also know I don't have this together. And I feel like I'm failing.

But when I'm really low, and I walk in and see this, it makes my heart feel a whole lot better.

Because I know they know love...

Parenting with Dr Asperger

Looking at your crying child and knowing that you are powerless to help. This feeling of utter desolate helplessness. This is the root of Mother Guilt. Because instinctively a parent will give their all to avoid being here.

He is sad. And he doesn't know why. And I can't get to the bottom of it. And I can't make it go away. I feel like I'm failing him.

He desperately needs me, and this time. I don't have the answers.

As I watched him curl next to me in a tight ball sobbing silently, I resolved to do the only thing I know how to do. To work through this the best way I know how, and to document the process. I hope it will somehow hold a clue to helping him. And perhaps it will help another parent somewhere, to know they are not alone.

Our journey starts here: Parenting with Asperger, so named after the pediatrician who recognized it in himself and others, and argued for their place in society.

Hans Aperger was an Austrian pediatrician (1906-1980). He may have himself been an autistic, although the disorder named after him was not popularized until 1981.
"We are convinced, then, that autistic people have their place in the organism of the social community. They fulfil their role well, perhaps better than anyone else could, and we are talking of people who as children had the greatest difficulties and caused untold worries to their care-givers." 

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Settling down to business

That's the theme of my day today. Settling down to business.

I've got some work deadlines I've set for myself that I need to meet, and I've dedicated today to that.

I've had the kids home for the past 4 days because they had a school-holiday on Friday, and the oldest and youngest were sick yesterday. Everybody's now bundled off somewhere or quietly occupied, so I should be able to have a productive day today.

But before I settle down to work, I owe you an update on how we're settling down to business on the home front. Again, thanks to all you wonderful wonderful fellow bloggers who have sent me links to resources and notes to lift my spirits. The words "they really helped" just do not capture it.

So here's where we are. We had that appointment to see the specialist - the psychologist last Thursday. I did really try to find another way through public healthcare and through the church. But the doors there just didn't seem to be opening. Yet? We'll see. One therapist working through the church asked me "Who what syndrome?", and "What syndrome?", then took my number, and never called back. Needless to say, I'm not feeling a lot of faith there, so I haven't called back either.

The psychologist was awesome. She obviously has a lot of experience dealing with this, and she has a room setup that was like a wonderland to my son. He was SO excited. I had to explain to her that he was not in his usual form. First of all, he was hyper all day, excited to go see the lady who would help us with "why he's so sad". He must have overheard my husband and I talking about it, and came right out and asked me. I wasn't sure how he'd react, but I told him yes anyway, and I think he was actually relieved. Hence hyper-excitement on the day of the appointment.

Anyway, she saw several obvious (to her, not to me) physical signs of sensory disorder right off the bat, like the way he sits, and moves. His speech she felt sounded as though he was translating back to English from another language and she wondered if that was normal. I guess we've gotten used to it, and we don't notice it anymore. She explained so much - like why he always wants to wear long sleeves and long pants, even in this heat! And why he always wears a belt, and things that we always thought were just his quirks. So now we know. He has a sensory disorder, and the suspicion is Aspergers.

She told me she could see where I had done a lot of work with him, and I felt so happy that a professional was basically confirming that I'm not a madwoman. Lol. She has shown me that my willingness to be so flexible with him has allowed him to develop trust and communication skills, but it has also allowed him to remain very rigid. So we're going to work on that.

When she explained to me how his sensory system works, despite the validation she had just given me, I still felt like I had so much staring me in the face that I missed.

• Why he constantly has the remote in his hand when watching TV. He flips to the TV Schedule every 5 mins to check what's coming next, and how much longer. And I would lose my temper and take the remote away. Now I know that he needs to rely on a structure and he needs to know what's next. Slaps forehead. Doh.
• Why when he asks you to confirm something and you explain that's not right, and then he says "I know, I was just joking!". It's a coping mechanism... On Sunday it was a neighbour's birthday. He asked when is your birthday. But what he meant was, what DAY is your birthday. Or how we would ask is, what day is Today. When the neighbour answered, you know today is my birthday. He gave the standard "I know, I was just joking. What day in October is it today?" Oh lil man, I can only imagine how hard these things we take for granted are for you...
• That I'm not going deaf, your hearing really is that sensitive!
• Why when you say something is irritating your skin, it really is. I'm sorry for all those times when I just sent you in the shower, and then if that didn't work left you to suffer through it.
• Why phonetics drove you crazy and you would memorize your words. I'm glad you stuck it out and now you're comfortable in your rules. I'm going to learn how to reach you better to make that journey less stressful for us both.

The list goes on and on. And so do we. We move on.

We need to get him to a speech therapist and occupational therapist next to be assessed. Then we're confirming the diagnosis and charting a course of action. I've caught myself, gotten off the emotional roller-coaster, and am ready for action.

Aside from the work we'll be doing with the therapist, I'm going to start a separate blog to keep as a journal of our journey. Hopefully this will be helpful to other parents who are wondering about their children and Aspergers. There were so many revelations I had once I finally got in touch with other people who have experience with this. I will let you guys know when it's up and running.

Ok before I go, have you heard about Motherhood - the movie starring Uma Thurman as a SAHM blogger? It opens October 23rd in select theaters. Can you do 2 things for me?

1. If you're on Twitter, please follow @Motherhood for updates, giveaways and news. She needs 12 more followers to get to 2000!

2. Check out this write-up on the movie and go see it if it's coming to your city (LA, San Francisco, Chicago, Boston, NY) on October 23rd.

 

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What it means to me

I am just blown away by the kindness of strangers. Thanks for your kind words. And to my blog buddies - your support and advice have meant more than you probably will ever know. I can never thank you enough for sharing your personal experiences and for offering me words of wisdom to keep me going. If I haven't responded to you personally yet, I promise that I will.

The last few days have been absolutely unexpectedly a rollercoaster of emotion. And I usually have a pretty even keel. (Or so I think anyway. Lol.) I have had highs that came from the realization that I was right, even when everybody told me I was wrong. And even when my own darling husband supported me because he knew it was important to me, not because he thought there was a need for attention.

I have had terrible lows fearing for the future of my child. I will not speak of these, because I will not be party to making them self-evidence.

I have gone through periods when I was numb, and still trying to process what is happening to us, and part of me wants to take it all back, and maybe I've made a mistake after all and it's becoming a big deal over nothing.

And then I got a call. I got a call from my relative who I adore and who has always been my 100% supporter. I will tell you now that he is my father. To clarify - he is technically my step-father, but I believe that fatherhood is something earned, not just given by birth. And boy has he earned it. He called me to tell me about Temple Grandin. I had never heard of her. She is apparently very renowned for her work in helping people understand autism. She may be the most famous autistic person there is.

He started telling me about her quirks related to what clothes she will and will not wear. And I thought about my DAILY battles with my boy to get dressed.
He told me about how certain noises will absolutely drive her crazy. And I thought about how sound-sensitive my son is, and how he covers his ears. And how the sound of his sister crying drives him to frenzied attempts to get her to smile or laugh. Or just stop.
He told me about she sees things in pictures and how she designs visually. And I thought about all the building and drawing he does, and his teachers who are convinced he will be an architect.
I am losing words here...because I cannot express to you what it means to know that there is someone else like him, and that he can be understood.

I understand now what I meant to him, and why he is where-ever I am. When I would work in the wee hours of the night, he would find me and come lie next to me. He hangs on to the hem of my skirt, he hangs on to my leg. I never knew what I meant to my child. But I do now. And no matter what it takes my love. I will fight for you.

Temple Grandin speaks.

It's long and I haven't been able to watch the whole thing, but I'm keeping it here for easy reference.

Gratitude

Thank you to everyone who left kind comments, and sent supportive emails. I read each and every one, and even though I did not respond to everyone, please know that they did reach me and they did help. I definitely didn't expect to feel as anxious as I did, I had butterflies in the pit of my stomach. WHY? I mean the child is fine. No matter what happens, he's going to be fine. I think it was the culmination of 6 years of mother's instinct up for evaluation. :-)

Two other things happened to brighten my day yesterday - I won a giveaway. I won a lovely 99% pure silver necklace from Silver Mermaid Jewelry. This is from the fundraiser for the Leukemia and Lymphoma Society that I told you about last week. The one for hosted by Who Knew Reviews. Lani was able to raise $772. She's still short of her total fundraising goal, so if it moves you, please go visit her and donate. :-) On a separate but related note, anybody see emails circulating talking about the benefits of soursop in fighting cancer? Just got an email yesterday but have never heard anything about this. Find this one very interesting, particularly as there are soursops from the neighbours' tree just getting eaten by the birds right now. :-)

The other thing that helped me is an award that the girl with the flour in her hair gave to me. Thanks hon. You are so sweet. Check it out.

That's bound to make you feel better isn't it. :-) I am so grateful.

Now for the update. So I was surprised at how nervous I was on the eve of taking him to the doctor. I didn't expect it. I'm rather practical when it comes to these things. Usually. So I decided to just email the post to the doctor so that he could see for himself in case I messed up the words and forgot (highly likely) all the salient points. Well he did read it, and he chatted with me one on one before we brought boy child in, and I think I was able to give a good sense of what my concerns were. Physically my boy checked out fine, maybe even great. But as I explained to his doctor, the concerns I have are less evident in a one-off situation and setting like this unless you provoke it. It's more when he has to process his emotions, or a change of emotions. Or when he has to learn a new concept. Still the doctor did agree that there seems to be something that warrants further evaluation. And I was happy to hear that his side of the conversation was tending toward putting me in touch with someone who could assess and teach me the skills to help him. I am not looking for a label out of this.

I am not looking for - your child is autistic, or obsessive-compulsive, or any of the million and one labels. I am looking for someone to understand what he's facing and armed with experience and understanding what the underlying causes could be, to help us to overcome those challenges. That's it. No drugs, no labels... I know it's all workable. I just need help, because I have exhausted my experience.

Speaking of which. I have to be very honest, I'm not sure how this post is turning out, because as I'm writing it I'm a little numb. I was so disappointed and angry last night, again. When it comes to this situation, I just feel like I need to keep my mouth shut and not speak to my very dear beloved family. They mean the world and moon and stars to me. I adore them. But I feel as though one or two are so dismissive of my concerns.

One of my big concerns is that he - in his words - just feels like crying, and he doesn't know why. And it's not every day, but it was twice in the last two weeks, and then yesterday again he told me he felt the same way. Yall need to understand how huge this is. For this child to come find me to talk about his feelings is ginormous. This is the child who if he gets mad or sad or whatever, will go to his room, lie in his bed until... I'm not really sure what goes on... but he will eventually, once he's ok, return to join the rest of the family. And if you venture in at those times to ask what's wrong, he won't talk. If I ask I might get a nod if I ask the right question, or I may eventually be able to coax some clues out of him, and we take it from there.

Anyway, so when I am met with - oh he's just sad, that happens. Hellooooo... I have 3. Do I not know what just sad looks like? I know it's with the best of intentions but it feels so belittling... as if I'm imagining what I'm seeing. Or worse as though my wanting to do something about it is irrational. You know what. If I just followed what other people said, he'd still be sitting alone in a corner of a room filled with other kids interacting and thinking that's what play is. It took work to get him where he is. Work that no-one else but my husband sees. The fact that you don't see it is the testament to its success.

The other thing I heard from another family member was that "I hope you have money. You could go through all this, and at the end he could be totally normal." Well, a - that's what I'm hoping for, not some badge of handicap that gives "special" privileges. And, b - no I don't have the money. And that might be a stumbling block that will delay all this. But this is going to happen. Isn't it worth it? What's the alternative? Settle for whatever happens? Isn't it my job to protect the interests of my children above all else?

Please forgive the ranting, but I really just needed to vent. I'm okay now. Really. I am.


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Confessions

Tomorrow morning I take my son to the doctor. He's 6. And for the past 6 years I have had a nagging voice in my head that won't go away. And tomorrow, I've made up my mind to talk to his doctor about it.

I've told very few people about my doubts. Really close friends and family. I never want to say it because I don't want it to be true. And what do I know anyway. I have my suspicions, but I'm not an expert. But there is one thing I know. I know something isn't right.

I've decided to write about it tonight, because this is why I started doing this, isn't it. As an outlet? But even putting the words down I'm tearing up, I don't know how I can say this out loud to his doctor.

When he was born he never bonded with me. He wasn't anything like the first - he didn't smile, he didn't coo. But it was more than personality. He wouldn't make eye contact with me. He wouldn't stare at me like babies do - taking in their surroundings. I breastfed him, but he would just eat and be done. Very functional. I cried once, telling my husband I felt so used. Isn't that dumb? How dramatic and emotional, I mean babies at that age have no intent like that.

Then we thought he might have a hearing problem. He would just sit rock still and you'd be calling and calling him. His doctor noticed it without us saying and referred him to an audiologist. Turns out his hearing was fine. We put it down to personality - he's just on his own scene. But I had that voice. I knew then what I thought it was.

But friends thought it was amusing that he was anti-social. I saw something different. I saw him playing next to other little kids. And it made me so sad for him, that he didn't make friends. Except if you asked him about it, he'd tell you he had a great time! And that he played with everyone. Well he didn't play with anyone. He played  near them, but never with them.

He would sit for hours lining up anything he could get his hands on. Like his crayons.

crayons with sleeves, sleeves only, crayons only

I'm surprised these aren't lined up exactly with the tile lines

And he'd build his puzzles over and over and over until - I kid you not - he knew them by heart and would turn them over and build them blank-side up. I am talking a 3 year old and 100-piece puzzles.

This is a 24-piece puzzle, but he did the same with larger puzzles

He had difficulty expressing himself. And he was easily frustrated. Only God alone gave me the patience and strength to help him through that and teach him "use your words, baby". If he was frustrated he would go into spells where he would cover his ears, shut his eyes and scream. He was easily over-stimulated, and he did not deal well with change. Minor changes - like the cinema having a rope where there usually wasn't one to cordon off a VIP area -  major meltdown.

In time I knew what to expect, and I would protect him. And try to teach him. I told my husband what I thought, and that I though that patiently teaching him how to use his words and to communicate was helping. Not in any dramatic quick way, but gradually so. And I saw a difference. He really started to blossom in his own way. I could worry less. But his academics...phew. Reading was tough.

He could learn the sounds of the letters. He could not, could not, could not put them together. He could not get the concept of joining those two sounds together. So far less for putting together funny ones like "th" and "sh". But we worked and worked at it. And once he got it. He got it. He's still like that. He may take a while to get something. But you never ever have to worry about that once he has it. He won't forget. And he will always understand math better than you will. It's like he has a number line in his head.

But in order to get him to get it, you had to reach him. I've worked with a lot of kids - taught briefly, tutored for a bit... I didn't know how to get that angle to reach him. No matter what I tried, it was like I couldn't reach inside and understand how his mind worked to be able to frame the idea to make it digestible. He sees the world in a totally different way. I loved to hear his descriptions. He would observe the same thing you did, but   relay a totally new perspective to you. It would be true and right, but it would have never crossed your mind. You saw a car going east. He saw wheels moving together at the same speed with silver rims and whatever other obscure fact you missed, but was totally true. That's not even a good example. I'm talking totally different plane of thought.

I kept him back in preschool a year before letting him go into kindergarten. I wanted him to be ready. And I didn't want anyone
1. Misunderstanding him
2. Labelling him
3. Turning him off of learning

He's come a long long way. He plays with others now. He loves now and is perhaps my most affectionate child (although he only shows that side to us). Although he is still a compulsive perfectionist.

But it's starting to get difficult for me. I'm starting to acknowledge that I need help. I don't know how to help him read and understand the same thing we understand. I don't know how to help him cope with loud sudden noises, or crowds. I don't know how to help him cope with his activities being interrupted (the game crashed on the PC, his brother wants a turn...)

So tomorrow we take the first step in that journey. I just don't want him to be labelled. I don't want anyone thinking he has a handicap - something keeping him back.

Most of all, not himself.


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