Two conversations. Two medical professionals. A few thoughts

As you all know, BOTH my divine kids are wonderfully and fearfully made. Both are a bit different to your average kid. My DH and I work really hard to get them the help that they need and we are constantly (through trial and error) trying to navigate our lives around their respective issues. Recently I had two different conversations with two different  professionals.

The first conversation was one that I had with Child1’s school psychologist during the last week of last term. I have a love-hate relationship with her for various reasons and luckily for her, my son loves her, otherwise she would have been GONE already. Here is a summary of the telephonic conversation that took place:

Me: Hello G, it’s Mrs W, Child1’s Mom

G: Hi Mrs W, how are you?

Me: I’m doing well, thank you. How are you?

G: Things are good etc….(we continue to painfully exchange some niceties)

Me: G, I’m a bit worried about Child1 who appears to be battling socially. His friends are going through puberty and have girls on the brain and he hasn’t caught up yet. While I am relieved about this, it does cause problems because he feels like he has “no friends” and that nobody likes him anymore. He’s quite emotional about it and I am not quite sure how to manage this transition in his life. Has he spoken to you about it yet? What would you suggest? Should I leave him to sort this one himself? Should I force him to make other friends? I don’t really want to get involved if this is something that he SHOULD be navigating on his own.  DO you have any ideas for possible life skills/self-esteem building stuff for him? What would you suggest? How can I help him to help himself?

G: Mrs W, Child 1 is very (insert negative comment about Child1) and is (insert another negative comment about Child1) and (insert another negative comment about Child1)

Me: G, I hear you but that is not why I am calling you. In any event, we are doing really well with the  xyz situation and with baby steps, we are even getting the abc situation under control. My husband and I are actually really proud of him because he has come such a long way from last year this time. We are very consciously trying to affirm positive behaviour at the same time that we address the not-so-positive behaviour. It’s a bit of a balancing act because we really don’t want to “break” his spirit.

G: Yes BUT…

Me: YES BUT…

G: YES BUT…

Me. YES But…

G: Mrs W, maybe we should set up an appointment.

Me: OK, I will call you soon.

I haven’t called her yet. And I won’t.

ALL of our conversations over the past two years have gone this way. I know that she loves my child but I feel that she is ALWAYS just trying to focus on his faults. I am by no means in denial about Child1 and what he struggles with but I would like her to (along with my DH and I) affirm him positively AS WELL.  She has NEVER, EVER had anything good or positive to say about him. In fact, I have decided to give her one more chance. If our next conversation goes like this, SHE’s OUT and I will be requesting a new school Psychologist for him.

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The 2^nd conversation was one that I had with our OT about two weeks ago.  As I mentioned yesterday, Child2 has gone puzzle crazy and we are so excited about it. And so on I (you know, the Mom who NEVER has anything to brag about) bragged to his OT.  This is how the conversation went:

OT: How are things going at home? I haven’t seen him for 2 weeks now!

Me: Things are going really well. We are continuing with xyz and abc that you suggested and my husband and I have worked out a schedule because we can’t get to everything at night. Actually, my husband and I are very impressed with him because he is doing really well with puzzles! He is now on 50 pieces! (of course I go on and on and on with the gushing)

OT: Mrs W, you need to remember that Child2 is on the spectrum for Autism and that there will be some things that he is going to EXCEL at. It doesn’t mean though that his problems are over.

ME: I understand that, but you know! He is building 50-piece puzzles and I’ve been timing him and he’s doing it so quickly! I’m going to have to get bigger puzzles because those ones are no longer a challenge for him!

OT. Yes Mrs W, BUT.

Me: silence because I really had no words

So these are my questions to you:

While I know that I pay both of these professionals to do a particular (very specific) job with my children and while I know that as a parent it is MY job to affirm my kids, am I expecting too much when I ALSO need for them to affirm my kids once in a while? Is it even fair of me to have this expectation? 

What do you think?

Is my Love Language (words of affirmation) possibly getting in the way here?

Could it be that subconsciously “I” want the affirmation and that it possibly has nothing to do with my kids?

What are your thoughts on these conversations?

Things I am afraid to tell you

I am not feeling the Motherhood thing at the moment. There, I said it.

I often wonder if I would have gone for it if I didn’t have an unplanned pregnancy in my early 20s.  I never gave it even one thought before that point and to be honest, it actually didn’t even feature in my dreams. You know when Mothers have those “this is what I always dreamed of” kinds of moments? Well, I never had any of those.

It is the one thing that has constantly made me doubt myself and my abilities.

It is the one thing that I find completely exhausting both physically and emotionally.

It’s the one thing that has me feeling really anxious. ALL THE TIME. I think about what lies ahead in the next 15 or so years with therapies and adjusting our lives based on our kids and what they need and I feel completely overwhelmed.

Perhaps my feelings are based on my particular context.

Perhaps I would feel differently if there was a bit more “normal” in my life.

Perhaps this is simply not meant for me.

Perhaps I wouldn’t have felt this way TODAY if I had noticed when we left home this morning that Child1 wasn’t wearing a jersey. Seriously. Do I really STILL need to TELL HIM to PUT ON A FREAKING JERSEY?

Perhaps I wouldn’t have felt this way TODAY if I didn’t just lose my nuts when I had to tell Child1 for the THIRD time to sweep under his bed! Sjoe. It took A LOT of self-control not to shout and swear and throw naartjies at him.

Perhaps I wouldn’t have felt this way TODAY if I didn’t have to fight with Child2 to co-operate with the panel of Drs at Red Cross who were doing some other tests with him this afternoon.

Perhaps I wouldn’t have felt this way TODAY if those Drs were INSISTING on a particular school for my child when I KNOW with all my heart that the one that they want for him is NOT the right one for him. Will I ALWAYS have to deal with BOXES? And LABELS? And DRS? And THERAPISTS?

Perhaps I just need a break.

People often say that they cannot imagine themselves NOT being Mothers. Well. Today I can. Really.

Is it even possible for me to love my kids to the moon and back and not actually love Motherhood all that much?

I don’t know.

I know that I am blessed. I know that what I have to deal with is really nothing compared to what other Mothers have to deal with. I know that my kids do bring tremendous joy to my life at least 95% of the time. I know that I was lucky to be able to conceive and have healthy pregnancies and that I’m blessed to be able to (mostly) afford to take care of them.

BUT today. I am just NOT feeling the Motherhood thing. I guess I better start saving for their therapy and hope that I don’t mess them up too much. And I pray that tomorrow will be better because I really do want this feeling to pass. Like ASAP.

Please don’t judge me. It took a lot for me to publish this.

 

Loving yourself and special needs. Or something like that.

On Saturday I went to a really cool ADHD workshop. The woman who presents these workshops has ADHD and has kids with ADHD as well so she’s pretty clued up on what works practically and what doesn’t.

She’s a bit lalala and shoowow  with some of her reasoning as well and she mentioned one thing that I haven’t been able to stop thinking about.

She said that we (meaning we with kids who have ADHD) were blessed and privileged to have kids with ADHD and that they (like the Indigo kids and the “whatever-else-special-needs” kids) existed to teach us (as Moms/caregivers) how to love ourselves.

Now I do have a problem with this statement for many reasons but I think that I will leave that for another post.

Fact is, I left there wondering whether I do indeed love myself.  I mean, I think I do. I always thought that I did.

But, the more I think about it, the more I realise that I actually don’t. Well, maybe I don’t love myself enough.

Deep down I probably have issues that prevent me from loving myself in a way that I deserve. Issues that are somehow ingrained and were there before I had kids. I should probably go for therapy to fix this but I am kind of bored of paying someone to talk about myself – that’s actually one of the reasons why I have a blog.

Amidst all the thinking that I did about this over the weekend I came to a concIusion of sorts:

Having children with “different” needs has done NOTHING to help the ”loving myself” thing along. In fact, I think that it’s had quite the opposite effect. It’s made me lose confidence in myself and in my abilities as a Mom.  It’s made me doubt every single decision that I’ve made as a Mom. It’s made me question my worth and my value because I can’t really contribute to conversations where “normal” is discussed.  It’s made me the centre of attraction at kids parties and at gatherings where there are kids of similar ages – you cannot possibly believe how much I hate that.  It’s made me quite bitter and angry and even depressed and I often wonder where I would be on the depression scale if I didn’t have atypical needs to deal with in addition to everything else. It’s made me not always be a nice person to my DH.  In fact, VERY OFTEN, marriages don’t survive special needs kids. I completely understand why.

There are still days when I realise that this is actually my life. There are days when I really hate it. And there are days when I am green with envy at everyone else’s “NORMAL” because quite frankly, my normal more often than not, makes me sick.

Now, I have learned that I need to stop over thinking this and internalising it. I need to stop trying to make sense of it because really, it is what it is. I have learned that I need to come to a place of peace and acceptance – everytime I think that I’m there then something happens or something is said that triggers self-doubt and then I realise that I still have such a long way to go when it comes to gaining acceptance of my situation.

I have learned that my DH and I need a lot of timeout from our kids – I think that we need more than the average couple. I have learned that I do need to look after myself in order to be effective. So, essentially I am attempting to love myself even more by nurturing myself and the things that are important to me.

But is it enough?

Is the fact that I don’t love myself enough the reason why I struggle with things like setting boundaries?

Is it the reason why I allow people to walk all over me?

Is it why I am a depression sufferer?

Is it why I struggle with basic things like friendship?

Is it why I struggle to sell myself and am always downplaying my skills and abilities?

I realise that this post is a bit incoherent and that I’m rambling a bit.  I’m trying to say it differently but I can’t really. Seriously though..

Can you truly and honestly say that you love yourself ALL THE TIME? Is it even “normal” to love yourself ALL THE TIME? Does the fact that I do all these nice things for myself mean that I love myself or does loving yourself really encompass WAY more than that?

What are your thoughts on Loving Yourself?

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.