Coming out of the closet

In December last year I took Child2 to Red Cross for a developmental assessment. When I first took him for Speech Therapy a few months earlier, the ST told me that she would recommend an assessment because more often than not, there was more to speech delays than meets the eye and she liked to rule everything out. Just in case. I told her that it’s fine.  I figured that there was no harm and that I was paying good money in the form of tax which my kids also needed to benefit from at some point.

We got an appointment for the 2^nd week in December after being on a waiting list for something like 7 months.

I very nearly didn’t take him that day. I felt that he was making significant strides with his speech. We’d also been to the OT a few weeks before that and had a plan going forward. I didn’t really think that it was necessary and I was very busy at work and I was feeling overwhelmed by everything that was happening during November and December. My DH insisted that I take him because we did wait long for the appointment and if there was any possibility that he needed to go for this assessment then we would probably have to wait for another year for a date if we wanted to avoid going privately.

That morning (as is our little tradition when we go for therapy) I took him for breakfast after dropping Child1 at school. I think he was having a mini growth-spurt right there because he ate like a pig! After this, we made our way to Red Cross.

He was seen by a Neuro-Paediatric Dr who observed him for maybe 40 minutes. She gave him puzzles to do which he managed really well. They went through books and he had to identify the objects in the book (he was 95% spot-on with this test) and she talked to him a bit. He didn’t really feel like talking back to her and I explained to her that he needs to trust her before he will entertain any form of conversation with her. I told her that he is just odd like that.  She asked me loads of questions.  About the birth (why do they ALWAYS ask about that?), about him, about his little habits and mannerisms etc. Etc.

She eventually concluded that he was Autistic. I had a mini freak-out there and then. I told her that she surely can’t observe him for 30 minutes and make a diagnosis like that. I told her that he can dress himself and is getting better and better at the independence thing and that he’s not like those Autistic kids in the movies who bang their heads and sit in a corner and are unresponsive.

I told her that he’d been diagnosed with SID a few weeks earlier and that I personally thought that she was confusing the two issues. Surely the OT would have mentioned/picked up Autism as opposed to SID? I don’t know anyone who is autistic or who has an autistic child. In hindsight, I realise that my comments to the Dr were coming from this context and that they were largely based on ignorance.

The Dr motivated her reasoning really well and she explained a little bit about Autism to me. Apparently there is a spectrum and some kids are at the top of the spectrum and some (like my Child2) are very high functioning. She was really kind and sensitive  and told me to do some reading (she recommended me some good websites) and email her ANY questions that I had.

I walked away from that hospital fighting back tears. I am not generally the type of Mom who goes into denial about my kids issues but THAT diagnosis was just too much for me. My friend called me as I was getting into the car and I just cried. Child 2 kept saying ..”Teacher sad”. My friend told me that he would do some research for me and compile a report of sorts. I  told him to do whatever makes him happy.

I took my son to my MIL  (it was school holidays and Child1 was there) and I managed to meet my DH during the day for lunch to tell him about it. He was as shocked as I was.  All the stuff that our child was doing, things that we thought were  very cute (the obsessive cleaning and re-arranging of my cupboards etc) was actually an indicator of Autism (according to the Dr).

We speak about it regularly (he asked me in December if we could rather start to talk about it in 2012 because it was just too much for 2011) but I honestly can’t say that we are at the point of acceptance just yet. I suppose we are still in denial. We are constantly looking for “signs”. Signs that it just can’t be. Signs that he is being a “normal” 4yr old.

I guess it will take some time. I cried nearly every day in December since finding out about this.  And on Christmas day my family really pushed me over the edge about it as well.

For the moment I’m doing a bit of reading – I’ve only just been feeling brave enough to start to do this. My good friend compiled a little report for me and sent me some really  good links to read. He took care to specifically not send me panic-inducing website links. I appreciated this soooo much. And I’m in the process of scheduling an appointment with a Specialist Neuro-Paed in private practice who specialises in this type of thing.

Her assessment requires her to spend at least two hours observing him. She’s already sent me a lot of forms to complete as well as forms for his teacher to  complete. Somehow I already feel better about this – we haven’t even consulted with her yet but it feels like she’s doing EVERYTHING in her power to be as thorough as possible in her diagnosis. I have been told by more than one person in the know that high-functioning Autistic kids usually get re-diagnosed when they are older with Aspergers or ADD. Seriously. I’m not sure if that is meant to make me feel better or anything. I guess it is what it is.

For the moment we just go on. There is a lot of confusion. There are many questions. There are lots of “why us, why him” type of moments.  There are MANY WTF moments. My DH even asked me if there is a remote possibility that we could be related because it just feels unreal that we made TWO broken children!

I am sure though that these feelings will pass and that we will continue to be the best possible parents for our boy who we absolutely believe is going to be just fine.

For now I realise that there is a lot to be grateful for. I am grateful that he is high functioning and that, depending on how well he responds to therapy in the next two years, we may very well be able to mainstream him. He can dress himself, he is halfway potty trained (and I’ve no doubt that we will get this completely under control in the next couple of months), he can eat by himself and he is exceptionally tidy about this.  I am grateful that there are ways to manage the issue,even though I can’t quite say how big an issue it is just yet.

I am grateful for my good friends that I’ve been talking to about this. They have been so kind and so brilliant and encouraging and sensitive.  It pains me to say this but those friends who I’ve shared this with (irl and in my computer) have been so much better at supporting me and encouraging me than my family.

Do you know anyone who is autistic or who has an autistic child?  Can you recommend some good blogs for me to read? I am not brave enough to google Autism just yet and I would prefer if you checked it out first before sending it to me.

Because I really can’t cope with anything at this moment that has the potential to induce panic and more anxiety. Please.

 

 

ADHD. Anger. Acceptance

I have mentioned before that my Tween boy has ADHD. I don’t think that ANYONE can fully understand what it is like to parent a child like this without having been in the situation themselves. Unfortunately you will only truly get it if it is your reality.

I had a normal, healthy pregnancy with my Tween. I ate all the right food, I didn’t drink, I didn’t smoke. I gave birth naturally and without any drugs, I breastfed, I bought all the best educational toys, I read to him. I nurtured. In other words, I did all the “right” things. My child slept well and even though he was a poor eater I didn’t worry too much because he was thriving. I really enjoyed the new baby stage with him. He was so, so easy. He was emotionally secure and I could leave him with one of his Grannies and literally come and go as I pleased. His milestones were all earlier than normal and he was speaking in full sentences from about a year old.

At some point I felt that something wasn’t quite right. Call it a hunch, call it instinct or whatever. I just felt that something about him was a bit off. HE was exceptionally busy – I thought this was normal though and I didn’t have a child before so had no real frame of reference, and I noticed that he couldn’t hold a crayon properly. I noticed that his drawings were all over the place and when I asked him to draw himself one day it was clear to me that there was simply no order/structure to his thoughts. I think that this raised the alarm bells for me.

I raised my concerns with the people in my life who told me that I am imagining things and that I am expecting too much from him. Everyone told me that he was perfect and a typical little boy. Still I couldn’t let go of this niggly feeling that I had. I phoned an OT and explained my concerns. I told her that he seemed to be unable to complete tasks, he couldn’t hold a pencil etc and I also discussed other things with her that were bothering me. I was referred to an Educational Psychologist who after an intense assessment officially made the diagnosis when he was 4.

I’m not going to discuss in this particular post the steps that we took from that point – this is a whole series of posts.

I am however going to discuss how I came to the point of acceptance.

For a long time I was very, very angry about it. The more I researched and dealt with people who were ignorant and didn’t understand, the angrier I became. How could this be happening to me? I had looked after myself when I was pregnant and I had done ALL the right things. Little things started to annoy me. Things like seeing pregnant women who smoked and who used drugs during their pregnancies going on to have perfect children who didn’t need any form of intervention.

I was angry with God about it. I prayed for my unborn child throughout my pregnancy. I was very specific about my prayers for him. I didn’t ask for a child with blue eyes and fair skin. I didn’t ask for a Nobel Peace Prize Winner. I didn’t ask for an Actuary or a Scientist or an Astronaut with red hair. I very specifically prayed/asked for health for him. Health in body, mind and spirit. I felt like my prayers weren’t answered. Surely if he needed to be medicated in order to do something as basic as paying attention or to assist him to focus on completing a task then he was not healthy in mind? At the time, that was all that I could see.

My DH however felt differently. He insisted that our prayers were answered. After all, we didn’t have a child with Down’s Syndrome or Cerebal Palsy. Our child was not blind. Or mentally challenged. Our child was not terminally ill. Our child WAS healthy in body, mind and spirit. He felt that yes, there were challenges ahead but that it was like having a child with diabetes for example, and meant that we needed to make certain changes in our lifestyle. I find it amazing how completely differently we saw it back then. I love that he was always positive about it and that he ALWAYS looked for the silver lining throughout it all.

For the next few years I went through the motions. We all did. My DH and I got empowered. We studied. And researched. And spent serious money trying to figure this thing out. We learnt everything we could about ADHD – I still read a lot about it. We made the necessary adjustments to fit it into our lives. We figured out (all by trial and error) what worked and what didn’t as well as which types of situations were conducive to his issues and which were not.

And I prayed. All the time. Every single day I prayed for healing of this “thing” that we were dealing with. I saw this “thing” as my enemy and I wanted it out of our lives. All I wanted for my son was boring and normal.

Two years ago I saw a Psychologist for PND. We spent about 7 sessions discussing this very issue. I cried a lot (and yet I thought at that point that I had come to terms with it – clearly I hadn’t) and I spoke a lot. I went back and forth with it. After one of our sessions she gave me homework. I was to write my son a letter and list EVERYTHING that I loved about him.

Somehow this was a turning point for me. I wrote that letter with tears streaming down my face and finally realised that he was perfect in every single way. It finally hit me that we all have a form of disability and that not all our disabilities are obvious or of a physical nature.

I wondered if he would have the same sunny personality if he didn’t have ADHD. I wondered if he would be the innocent child that he was (the one who cried when we killed spiders) if he didn’t have ADHD. I wondered if he would be the same good-natured, compassionate boy if it wasn’t for the ADHD. I wondered if he would be as brilliant and creative and dynamic as he was if it wasn’t for the ADHD.

It was at this point that I finally realised something. I needed to stop praying for it to disappear. It is part of what makes him who he is. It is part of what I LOVE about him. It is part of what makes me love him the way I do.

Nowadays I pray for strength and for courage to stand up for him when I need to, and for wisdom to help him manage his condition into adulthood.

Because I realise that ultimately, he will be fine. He will be a fully functioning adult with a few challenges (like all of us) but he WILL be fine. He will cope. He will fit into society. He will contribute to it in a positive manner.

And he will love the way he is loved.

Completely.

Madly.

Deeply.

Unconditionally.

Anger is nothing more than an outward expression of hurt, fear and frustration. ~ Dr.Phil

an·ger  (nggr)

n.

A strong feeling of displeasure or hostility

Yesterday I had to deal with someone who was extremely angry. The person in question is always easy-going and positive and is someone who constantly takes things in their stride. There is very little that can truly set this person off.

However, the person has gone through a rough time of late and there is really no nice way of saying that the person was having an incredibly KAK week.

The person lost it. As in completely. I listened. I tried to offer support. I offered encouragement. It wasn’t enough. Nothing was enough. I understood where the anger and frustration was coming from but at the same time I felt powerless because there was really nothing that I could say or do to make it better.

I am a Mommy and with my sons I can kiss it better or say a reassuring word or give some hugs and this is ALWAYS enough.

I am a woman and a very practical one at that. I believe that every problem has a solution. In order to fix A you need to do B and if B doesn’t solve the problem then you try C or maybe combine B with C or something like that. Yesterday when I was trying to placate the person I’m referring to there was absolutely nothing that I could do except to allow them the space to vent.

I became anxious because the person was becoming irrational and saying things that were scaring me. I feared that the person would somehow self-destruct because in the heat of this anger it seemed that the person had completely lost perspective. It took every bit of self-control that I had to not let the person see that I felt afraid for them. That I felt afraid of them.

Things had basically just reached boiling point.

I was too anxious about this to even blog last night. Thank goodness I had some Rescue Remedy in my house.

I spoke with the person earlier and they seem to have calmed down significantly. I guess we all need to go nuts sometimes.

On the Cape Flats they have an Afrikaans saying that goes something like this – “almal kry ‘n kans om uit te rafel”. Loosely translated it means this: everyone get a chance to unravel (emotionally or otherwise) or to lose the plot sometimes.

I was thinking this morning of what I am like when I am angry. I very seldom get angry. I am similar to the person that I’ve described in this post except that  am a lot less positive. It’s fucking hard for me to consciously remain all Pollyanna-like. I do take things in my stride. I am a reasonably chilled person and there are very few things that phase me to the point where I absolutely lose it. I suspect it’s the awesome Happy Pills that I am on – they really do take the edge off the most intense emotions. I don’t even suffer from road rage and I am no longer a shouter.

This is not really a good thing because sometimes I need to deal with my emotions at that moment and then I choose not to. Because I can. And after being kind and patient for a long time there comes a time when I lose it. BADLY. It usually takes something extremely trivial to set me off. When I eventually do get angry you will actually wish that you had never met me because I do lose perspective and I may become destructive.

Do you get VERY ANGRY? So angry where all that you can see is RED?

How do you manage your angry emotion? Do you completely lose the plot? Do you take it out on the innocent bystander? Do you lock yourself in the bathroom? Do you have a glass of wine? Do you punch your pillow?

Ps…I am really sorry about the vulgarity in this post and I promise to not make a habit of it. I just happen to be in that mood today where every second word is going to start with an F.