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 2nd 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.

 

 

About these ads

26 thoughts on “Coming out of the closet

  1. Firstly I just want to give you a big virtual hug! Because hearing a diagnosis like that must have been incredibly hard and a huge shock to your system. I imagine pretty much the same reaction I had when I was told my daughter had cancer. One of utter and total disbelief. One of “I can’t do this” and one of “oh my – this feels like a prison sentence”. I don’t know exactly if this is what you felt, but that’s what I felt. However what I found was that with learning more and getting more knowledge I felt as if I regained some control.

    I also want to say, you are a great parent. A loving mum who has and will always do your very best for your kids.

    And I admire your courage for sharing this with us.

    There is a book called Thinking in Pictures written by a lady with autism. I was going to read it, but had to give it back to the library as I ran out of time and it was booked after me. Should actually go past and borrow it again. Here is a link about the book – http://www.grandin.com/inc/book.html

    I don’t know much about autism. I’ve read a number of books because I’ve always been genuinely interested in the subject.

    The links that I know of are:

    http://www.joysautismblog.com/ (a blog written by a mum with a child with autism and I think she might also have a daughter with aspergers, not sure).
    http://casdok-facesofautism.blogspot.co.nz/ (links and snippets of other blogs you will find. Some kids will be high functioning and some will not be, but you are likely able to find some blogs here)

    There are 2 ladies on my facebook that I think might have kids with autism / aspergers and I will ask them if they would be happy for you to contact them.

  2. Oh my friend, my heart bleeds for you . At a stage we were close to a autism diagnosis – in fact L’s neurologist warned us about Aspergers when he was only 12 months old. SID has a distinct link to autism – it was explained to me that almost all autistic kids have SID too and that SID is if you think very broadly about it a very low or basic form of very hug functioning autism. So I would think keep up with the OT and let her work with the doctor. Our OT has also told me that she on more than one occasion, afte treating the sensory issues, had the diagnosis on autistic kids changes to just SID as they developed.

    Lots and lots of love to you. And no, they are not broken, they just face other challenges than you run of the mill child. Well, that’ s how we look at it.

    I will mail you a link to one of my oldest blogging buds- Debi. One of her twins is a 5 year old autistic boy. You can even mail her – she is one great girl. She even worked through her hubby’s unfaithful stint last year. And a lot of twins are autistic – either one or both. So look around at the twins blogs. One of my other blogging friends, Barb is a teacher to autistic kids – she is sweet and will certainly help. Also mail her.

  3. I am so very proud of you – are you sure your word of the year is not BRAVE with a capital B?!

    He is not broken (neither of them are) – they really are just unique and special kids.

    As for your friend, he is super special! I like him already and I haven’t even met him.

    Lea’s advice is spot-on – it will take you time to work through it all but in the meanwhle, keep ploughing on – he will be FINE!

  4. Oh hunny!
    ((((hugs))))

    Firstly you and your husband have not produced broken children! You have produced amazing little humans who have lessons to teach us, who have love to give us and who are unique little souls that chose you two to be their parents :)

    Aaron was diagnosed with anxiety last year, his therapist also told us that he may or may not have Aspergers (the symptoms are very similar as are the non-medicinal treatments) but that she wouldnt diagnose it untill he was a little older.

    Knowing why he behaves the way he does sometimes makes it a little easier to manage and understand and accept. I much prefer knowing to not knowing. Also, knowing he has anxiety means we can help him learn to control it and learn to get through it.

    Im sure once you see the specialist, regardless of the diagnosis, you will feel much better. The unknown is a scary place to be.

    Just know we are here for you, no matter what. You can call me or DM me or email me whenever you like too!!!

    (((hugs)))

  5. It is so hard to hear about difficulties with our children, and so normal for you to be in shock and then to feel grief as you mourn the loss of ‘something’. But I remember something my friend said to me (son with aspergers ), when my son was diagnosed with Crohns….he is the same little boy he was when you walked into that office before the label.
    My friend’s boy went to Vista Nova for a few years, excelled! Then was mainstreamed at St George’s high school and is loving it. He is a lovable, quirky, incredibly funny boy-man, with an amazing intellect. We love him.
    You are a strong, brave mom and of course you will do everything you need to for this little boy, but allow yourself to feel the grief and sadness for him. Mom’s don’t ever want to hear that their children may have a difficult road ahead, I know I battled terribly with that.
    Thinking of you….and well done for ‘coming out’. xxx

  6. I can totally understand this.

    Personally I do think it is because autism has a negative wrap to be honest with you. My cousins wifes sisters kid has autism but he is quite far on the spectrum.

    I am going to mail you rather – I cant put my comment about this into words properly! But like Marcia said – he is not broken!

  7. Big ((hugs))

    Hearing news like this will shake any parents world but I really believe that he was born just the way he was meant to be. He certainly isn’t broken, he is different. Who is to say which one is normal?

    Stay strong and I pray you find peace in your son’s diagnosis.

  8. Jules! Big Big {{{hugs}}} I can only imagine as a mother how hard this might be for you. I’ve shared with you about the issues with my brother, issues which weren’t dealt with until he was an adult and all the repercussions there of.
    SID’s, ADHD, ADD and Aspergers share some similar traits so they are difficult to diagnose so I think it’s great that you’re going to see a specialist who can do an in depth investigation for you.
    It’s my understanding that Aspergers IS high functioning Autism. But I’m sure your Dr will be able to get to the bottom of this.
    The only blog I know of that details a mothers journey with her son who has Autism is Stacey’s blog – http://lionheartinourbathtub.blogspot.com/
    Please keep us posted so that we can help support you through this.
    Much love!
    xxx

  9. My dear friend. Neither of your children are broken. Far from it. Don’t even think that. They are unique and their own beings and are loveable just the way they are.

    I recently met a mom at D’s school, her son is also in Gr 8 and he has Autism – Aspergers. I always thought (in my naivety) that children with Autism/Aspergers etc were special needs children, but apparently not. Her child is in class 8 6, with 8 8 being the top stream, and there are 8 classes. so he is high intelligent and seems to cope at school.

    Is there not a support group that you can get involved in. Just to know what to expect and how to deal with situations that you are not used to?

    I don’t read many blogs, but I do know that Ali Edward’s (amazing scrapper) son has Autism and she has a few links on her blog. her link: http://aliedwards.com/blog/autism

    Love to you x

  10. darling heart. sending you so much love. i haven’t any advice to give you whatsoever, because i know nothing about autism – except that it is in varying degrees; and what you see ‘in the movies’ is always the worst extreme.
    i love your boy – i think that he is very special and precious and he seems incredibly affectionate. that brief time that he had with isabella on the blowup pool was divine!
    media is so crap about inflating things.
    love you so much babyshoes
    xoxox

  11. *giant hugs*

    I imagine that it must be quite a shock to receive a diagnosis like that. It seems to me that 30 minutes is a very short time to come to that conclusion, especially if the diagnosis is one of highly functional. Might not be a bad idea to get a second opinion?

    Either way…knowing is better than not knowing right?

  12. My dear friend…I can just imagine how hard this is for you. I read the above comments and cannot add anything to it. I just know that God doesn’t make mistakes and that you don’t have broken children…each one is unique and special in their own right. I know that this brings a lot of challenges of you as a family and we will be here for you to listen, encourage and cheer you on.

    Sending lots of hugs.

  13. Can i just say that I love your honesty, your realness. The fact that you and hubby referred to your kids as ‘broken’ which is so un-pc but right then and there IN THE PAIN it felt like that. You know the truth in your heart but I so get what you meant. All of our children have unique traits – some need ongoing management and intervention, other traits make us proud of them but its all woven together to make them who they are.
    I so need to meet with you….i was almost committed myself when faith was little – i thought she was autistic — we had a real journey. I never had her assessed but it was because of a book that saved my life called Raising Your Spirited Child. It may well be worth just dipping into it – read the review on Amazon. I dont know all the stuff you are going through but I have a pretty good idea of your head space -what mother could NOT relate to you right now? I have a friend whose son has recently been diagnosed with Asbergers….he is almost 10! Thank God for amazing therapies, therapists and literature that can help us help our kids be the very best they can be. It is going to be okay. Really. Deep breaths.

  14. Sending you lots of love, hugs, understanding and God’s guidance and blessing. Your kids might not fit the mould of our society (as we see it) but they are perfect in their own way.

    My prayer for you as you embark on this unknown journey is that God grant you the serenity to accept the things you cannot change; the courage to change the things you can;
    and wisdom to know the difference.

    You are in my thoughts and prayers and I will definitely be looking for inspiring articles on the subject for you.

  15. Julia, the comments are beautiful! You have amazing readers with lots of compassion. I honestly can’t wait to meet your kids one day soon!

    PS I really think you need a friend date with MelB.

  16. Hi Julia,

    Came across this blog http://www.thesamechild.blogspot.com/. Same Child, Different Day
    About one family’s continuing experiences after a child’s autism diagnosis, she also has links to other very interesting blogs you might find helpful. I hope you are not drowning yet in information overload.

  17. This is not an easy diagnosis to deal with. I don’t think any diagnosis that has a negative connotation is easy to deal with. I think you are lucky in that South Africa has some many autism links and support group. I know of the Star Academy website, and I think there is Autism South Africa.
    I wish you all the best in your new journey and in coping and dealing with it and finding out and coming to terms with all there is to know about it.

    I sometimes wish there was the same support in South Africa for my son’s condition.

    Sending big hugs!

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s