Needing Clarification

When I first started to suspect that my son had autism (when he was around 2 years old) I began to notice every little thing he did. I noticed how he lined up his cars, spun round in circles and how he rocked his head repetitively. I worried about him a lot and put everything he did down to Autism. As the months and years went by I stopped worrying so much and realised that whether or not he has autism, he was still our little boy with his own little personality and that what ever happened, we would always love him unconditionally. The fear started to reduce day by day and in it’s place I found acceptance. Autism was always there in the back of my mind but it no longer consumed every waking moment of every day. Life went on, I started sleeping again and I tried to be the best parent I could be while I waited and waited to hear about his assessment.

Finally we got the phone call we had waited so long for and on Monday my husband and I went along to the hospital for our appointment regarding our sons ADOS assessment. We were with the clinical psychologist for an hour and 45 minutes while we answered her questions and told her everything about Harry that she needed to know. To say it was hard going would be an understatement because we weren’t there to tell her all the great things about (our now) nearly five year old son. We weren’t there to tell her how funny and kind and gorgeous he is. That would have been irrelevant to our appointment and would have just wasted time that wasn’t needed to be spent. Instead we had to sit there and tell her everything that was wrong with him. Or rather everything that society deems wrong with him. We spent 105 minutes answering questions which led us to telling her how he doesnt really play with other children, how he can’t write his own name, how he refuses to get dressed, how he will only wear certain clothes, how he flaps his hands when he gets excited, how he gets anxious when he hears unfamiliar loud noises and spends time with unfamiliar people, how he doesn’t seem to understand emotions or show empathy, how he gets hyperactive and just won’t stop when he’s told to calm down, how he doesn’t have any idea about things that aren’t socially acceptable (like wearing his sisters pink onesie and hair bows or running around naked and ripping his pull up off in the middle of a restaurant because he doesn’t want to wear it any more). We had to sit there and tell her how bad his echolalia is, how he taps his nose with his comforter when he’s feeling anxious, how his speech is behind his peers and how disordered it is, and how he repeats the same sentences over and over and over again. I left the appointment feeling emotionally drained.

On Wednesday it was Harry’s turn to be seen and it went exactly as I expected. I was supposed to leave him alone with the two clinical psychologists so that they could assess him without me there, but Harry became so upset that I couldnt leave him. I had to go in with him but stay silent. Harry wouldn’t say hello to them or take his coat off and he didn’t speak to them the whole 30 minutes we were there, except to repeat back absolutely everything they said to him. He wouldn’t engage in any play with them, he didn’t do anything they asked of him and he didn’t react to any of their facial expressions or games. They blew bubbles at him and then paused and I knew they were waiting for him to ask for more bubbles but he didn’t say anything. He just stared, shuffled about and licked his lips anxiously the whole time. They asked me if he always licks his lips likr that and I had to tell them that he only does it when he’s anxious. He wouldn’t answer any of their questions, even the ones I knew he could answer. It was difficult to watch. After 30 minutes one of the doctors asked the other if they needed to do any more (the appointment was suposed to last 45 minutes) but she replied that it wasn’t necessary and that she had seen all she needed. I left the appointment feeling emotionally drained.

I am now almost certain that Harry will be diagnosed with Autistic Spectrum Disorder.

Of course the school need to add their input too and have completed the questionaire they were given by the hospital. What the school have put in that questionaire will determine whether Harry needs to have an observation in school or not. If what have they written marries up with what my husband and I said on Monday, and what they themselves saw on Wednesday, then he won’t need another observation and we could have the answer we’ve been waiting three years for, next Tuesday.

The only problem is, everyone in Harry’s care needs to be free to attend the meeting and seeing as it’s only a week away and quite short notice, I’m not sure if that’s going to be possible. If we don’t get to meet next Tuesday then we won’t get to meet until January because the school breaks up from christmas on Friday and someone from his school needs to be there. I’m keeping everything crossed that all the relevant bodies can make next Tuesday because I really don’t want this hanging over my head all over christmas and New year.

Since I got that phonecall a little over a week ago, I’ve been noticing all of Harry’s little quirks again. I mentioned to my husband how weird it is that his traits have suddenly become so noticeable. My husband says they’ve gotten more noticeable as he’s gotten older, so I guess they were always there, I just stopped seeing them like I used to. His hand flapping, lip licking and echolalia had just become normal to me but now that autism is back in the fore front of my mind, once again it is all I can see. Unlike three years ago though, I’m no longer scared. I know in my heart that my son does have autism and what’s important now is that we get that clarification so that we can move on with our lives and support him the very best that we can.

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This post is linked up with:

Marvelous Mondays 

Reflections From Me

Twinkly Tuesdays

Blogger Club UK

Best and Worst

Cool Mum Club

Stay Classy Mama

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28 thoughts on “Needing Clarification

  1. It is always so heartbreaking hearing how long it takes to get a diagnoses and to get appointments. Hater the outcome he is the luckiest boy to be surrounded with such love and an amazing mummy. May you have a beautiful Christmas!!! You are all in my thoughts xx #mg

  2. Pingback: StayClassyMama Link Party No. 39 |

  3. I understand Its extremely hard for both. Little boy faced with too many questions- its not something comfortable. Feeling drained is normal- You are a brave Mother Janine. Everything will be fine soon. May your Christmas be bright and beautiful. May uncertainty ends with a smile. #MG

  4. I’m sure that Jan 10 cannot come quickly enough for you. I’ve also been through these screenings with my son and know how the worries can occupy your every thought. Getting official answers is the first step toward gathering all of the resources available to you and him. Never forget the tremendous community of support that is out there for you guys. #stayclassymama

    • Unfortunately the meeting won’t take place until 10th of January now because they feel the 13th will be too rushed and then it’s the christmas holidays. The reason we’ve had to wait so long as that they don’t like to diagnose too early and they wanted to see if Harry’s social communication skills improved as his speech improved (he has quite a severe speech disorder so they wondered of it may be that holding him back). When his speech improved and he still displayed lots of ASD traits he was finally put on the waiting list for an assessment but the waiting list here is around 18 months.

  5. I can’t imagine how the process of getting a diagnosis has impacted on you both, I can’t understand how it feels to be you. I can tell you that I have had the pleasure of working with some of the most wonderful children with ASD and that each and every one is unique in a beautiful way. Keep strong and remind yourself that you know all of the brilliant things that he CAN do, as well as those that are more challenging. #StayClassyMama

  6. “Instead we had to sit there and tell her everything that was wrong with him”

    I can understand why they need to ask questions like that but there must be a more sensitive way to do it especially when it has the effect of reducing your son to a collection of symptoms rather than the whole little person he is.

    I hope after all that you get the support you need.

    #StayClassyMama

  7. Those appointments sound like they were really tough. Sending hugs and I hope that you get all the support that you need. Like you say though, this is a positive process but still emotionally draining and tough on you #Stayclassymama

    • She didn’t actually ask us to say “everything that was wrong with him” it just felt like that was what we were doing when answering her questions like does he speak out of context, have sensory issues etc and then we had to go through all of it in heartbreaking detail if that makes sense?

  8. I can’t imagine the stress you are enduring right now…waiting for a diagnosis for any disorder is so hard, but for something that will effect your lives so much it is a waiting game that would destroy me. You need answers so you can begin to work towards goals….I know it is impossible not to stress and worry, but I have read a few of your posts and just from those i can tell you that are a stronger, better mother than you know and you will be amazing no matter what answer comes back. #stayclassymama

  9. What a tough time you’ve been having. although I can sympathise massively. Our daughter is awaiting assessment for ASD too, she’s been waiting since the age of two and they won’t assess her until she is four so we have six more month to go. I hope that you get him the help he needs, and for you too. #stayclassymama

  10. ah sympathies to you – my son had an ADOS test too this year and was diagnosed with mild to moderate ASD. At the time i felt a mixture of things – relief, worry. Now I’m glad that its helped him get some extra support in school and that we can learn new strategies to help him, and our selves. #stayclassymama

  11. I can not imagine the anxiousness that comes along with the journey to diagnosis and treatment. You are a blessing and a wonderful advocate to your son. Love to you both!

    #stayclassymama

    • To be honest if he does get the diagnosis I will burst into tears bit it will be more relief than anything. I don’t think people understand that unless you have been through this while process yourself. It’s always nice to find people who have and understand.

  12. An anxious wait I am sure but whatever the outcome I know you’ll be able to find the strength and deal whatever happens. He’s fab and so are you lovely. Thanks for linking up #bestandworst

    • Thanks so much. Unfortunately I was informed today that we won’t know until 10th of January now because Tuesday would be too rushed then it’s the school holidays so another 4.5 weeks yet. It sucks but at least I know a date now.

  13. Oh you poor thing. What an anxious time this will be for you all. I know how it feels to have to go to a doctors appointment and tell them everything and then the appointment is over and you have to walk out of the room, back to normal life, but you’re just numbed by everything you’ve just had to re-live through.

    I really hope that the meeting is as soon as possible and that your little boy (and you) can start getting some support #BloggerClubUK

  14. You have such a gorgeous boy! I’m sorry you are all having to go through this stress but as you say, even the things we know in our heart feel more comfortable to deal with after some validation. Either way, you sound like a very loving and patient mother and he is obviously thriving as a result. I wish you all the best for the meeting, and have everything crossed that you shall receive the verdict sooner rather than later. Xx #twinklytuesday

  15. Ooh what a tough time and the appointments sound so hard as like you say you are having to point out his quirks… No wonder they seem more noticeable to you now. Like you say it is positive as it means he will get the help he needs in his life but still tough to handle. Fingers crossed you get to have your meeting and find out before Christmas! Xx #twinklytuesday

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