It’s Official…

We’ve had it confirmed now by two paediatric development specialists.

Max is on the autistic spectrum.

I know that this has been a long time coming, but I lost that last little bit of hope that it might turn out to be just a speech delay yesterday.

My baby boy, who is coming on leaps and bounds, is going to need a LOT of help over the course of his life. I may need to be around for him much further into the future than I ever anticipated.

Of course, as the Dr said, time will tell. He’s been doing really well recently, more tantrums, but also more of us pushing his boundaries more than he’s used to, so I figure it’s a fair trade off for now.

Hopefully he’ll keep surprising us with learning new things more and more as he has been over the last six months.

I cried last night though.

Sobbed for the life that I had thought of for him.

“He’ll never be a chat-show host, but then there are lots of people who are good at some things and not others” said the Dr.

That crushed me.

Completely.

Then they said they’d need to take some blood from him for tests.

I started crying at that point.

I knew Max would never ‘allow’ that to happen. That he’d scream and buck and kick and bite and scratch and scream and be terrified.

I couldn’t be in the room.

Dean and Marie (our parent to parent helper – she is AWESOME) took him along to the ward. I stayed outside with my dad. I heard him screaming and screaming and crying.

A few minutes later they were out.

It had taken four of them to hold him down.

He had a little round plaster on the back of his hand, which he noticed and then proceeded to hold and cover with his other hand at every opportunity for the rest of the day. My cute lil boy, was so upset at what had happened to him that he clung onto what reminded him of it for the whole day.

He’s still my lil man after all.

He’s a wee cutie, who throws strops over the silliest of things, freaks out whenever he hears the front or back door close (which leads to us singing at the top of our voices or ‘coughing’ while closing it so he doesn’t notice), he runs up to us for hugs, and pulls us with him to wherever he needs us to be.

At least now that we’ve had the diagnosis we can get on with our lives, and get the support and understanding that’s needed to help him, and us, through it.

And thanks to Jen, I don’t feel like I’m completely on my own with it all. Words can express how much it means to have you around to hold my hand. Thank you xx

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40 Comments

  1. July 6, 2010 / 3:27 pm

    You are so welcome my friend, I consider myself lucky to have met you and delighted that I have been able to give you some support. I know this is a hard time and it takes a while to get over the grief for the loss of the future you thought Max had. We are about 10 months in now and I still feel it, very keenly, at times. The great thing is that there is only a few days between our fantastic little boys and we will always be great support to each other, it really does help to have someone who ‘gets it’ and who has a child the same age, for both of us:)

    You know where I am. Big hugs. Jen.

  2. July 6, 2010 / 3:33 pm

    Hugs to you. I was just going to say that now it’s confirmed and “official” at least you can get on with doing whatever needs doing to make sure Max has a fantastic life. And I am sure he will.

  3. July 6, 2010 / 3:38 pm

    I too cried when I Anthony was diagnosed. It was hard to know that he was going to have to try so much harder at everything. Since his diagnosis he has really amazed me with how far he’s come. Having a diagnosis, however hard, has helped us focus on the right areas and issues. It’s also helped me to be more tolerent of his issues… although I have to remind myself to still push him and have found that if I still expect him to behave as normal (for the most part) that he’s learning what to and not to do. Accept the diagnosis but not the behavers that go with it… that’s my advice.

    Much luck to you (and him) on your journey together.

  4. July 6, 2010 / 4:04 pm

    Oh sweetie. Well, now you have an answer. But it’s normal to grieve for what is lost, for what you had hoped for for Max. And having to sit and listen to him scream – don’t I know how hard that is! Sending big hugs from across the miles. xoxo

  5. July 6, 2010 / 4:10 pm

    I definitely hope we will be around for each other for years to come! 🙂 xx

  6. July 6, 2010 / 4:10 pm

    Thanks sweety, I love the hugs! Hopefully one day they will be in person eh? xx

  7. July 6, 2010 / 4:12 pm

    I will certainly make sure he has the best possible life he can that’s for sure! Thanks sweety. x

  8. July 6, 2010 / 4:13 pm

    Thanks Laurie, I’ll keep your advice in mind. Definitely what I’ve been attempting to do when I can so far. *hugs*

  9. July 6, 2010 / 5:37 pm

    I have read it, but I loved reading it again. Thanks sweety! Hope you have a great time on your hols! xx

  10. July 6, 2010 / 6:02 pm

    I’m not sure what to say but I didn’t want to read and not comment. We’re fairly certain Nairn is on the spectrum in some high-functioning facet and I’m not sure whether a definitive diagnosis would be a good or a bad thing at this juncture.

    Stay strong x

  11. July 6, 2010 / 6:09 pm

    Aww, Marylin. While I am so sorry it turned out to be autism, I am so glad you have a diagnosis now. This can only be good to know and as you said, there is treatment and scads of help out there.
    Don’t let this get you down… as much as you can help it. Nothing has changed since before you knew this latest bit of information. Now, you just know more about his condition than you did, that’s all. It can only be good to know what your dealing with.
    XOXO

  12. July 6, 2010 / 10:20 pm

    Thanks sweety, I know it’s better to know, I guess I was just trying to cling on to that wee bit of hope that just maybe… but it’s better to know and get Max all the help he needs. Early Intervention is key! Or so all the specialists say!

  13. July 6, 2010 / 10:26 pm

    Hugs.

    I cried after my girls were diagnosed too. Even though with both of them I’d gone in expecting it. Partially it is a relief to know there is an answer and the reason my kid does these things is not because I’m a bad parent.

    Once you have a diagnosis it gives a path to follow. But damn it is still so hard and frustrating at times. Other times it is wonderful and amazing.

    I’m so glad you have friends to support you.

  14. July 6, 2010 / 10:34 pm

    After a good cry last night, I know that really it is a good thing for Max. He’s already been having play therapy since April and we’ve all seen a big difference in him, so it really does help.
    Thanks xx

  15. July 6, 2010 / 10:43 pm

    I knew it was coming too, still hard to hear it though eh?

    Thanks for letting me know how you found it. *hugs*

  16. July 7, 2010 / 12:15 am

    Thanks Julia, it’s nice to know I have people to talk to! xxx

  17. July 7, 2010 / 12:15 am

    Thanks sweety, I know that it’s best for all of us, just hard to accept I suppose. Feeling better now though. 🙂 x

  18. July 7, 2010 / 12:20 am

    Thanks for the advice Sandrine, I have managed to find a couple of blogs which are written by adults on the spectrum, which has made for great reading (and huge sighs of relief that Max will be able to have a relatively normal life), and am in touch with a few people who are going through the same as me. It makes me feel much calmer knowing others who are going through or have been through the same as we are.
    Stay in touch! xx

  19. July 7, 2010 / 12:24 am

    Yup and seeing it in black and white, getting a diagnosis, that rams it home hard. xxx

  20. July 7, 2010 / 7:23 am

    Aw Flower! Sending you a BIG hug! you will now move forward & lil man will thrieve but in a different way. You have got lots of support here even if it is only virtual hugs & flowers!

  21. July 7, 2010 / 7:47 am

    (((hugs))) for you.

    And IE, they can do amazing things to help him.

  22. July 7, 2010 / 9:40 am

    We used to think our Max has speech delay too – mostly because he had 3 languages to deal with… – and we didn’t have him diagnosed till he was six. Your Max is very lucky you are getting help for him now. And although he may not like some of it (like the blood taking) hopefully he’ll be cared for by people who know and understand his reactions. Two things that really helped me was getting in touch with grown up autistic people, hearing things from their perspective, and meeting other families who live with autism, in real life, and online. Please get in touch anytime you like.

  23. July 7, 2010 / 1:09 pm

    I’m so sorry. It must have been so hard to hear. You are doing the right thing though by dealing with it and not ignoring it – although sometimes that must seem like the easiest route. ((((hugs))))

  24. July 7, 2010 / 2:23 pm

    I guess we both know about that huh? Thanks sweety. *hugs*

    How are you and yours doing? x

  25. July 7, 2010 / 4:22 pm

    I am so sorry but also so happy for you , sorry for Max having to deal with it but happy that at last your not what is wrong and you can deal with it in the best way. He is very lucky to have you and Dean around, i know you will both give him an amazing life.

    Oh the blood thing is tough ,remember having to be with Rebecca once and it was horrible . She was ok the first few tries but they could not get a vain and she was hysterical by the end 🙁

  26. July 7, 2010 / 4:56 pm

    Thanks sweety, it means a lot to hear that!

    Max wouldn’t even entertain the idea, so he screamed as soon as he was being held, even though it was Dean. Luckily they got the vein first time, but it still took over 5 minutes of screaming and thrashing around. I just couldn’t be in the room when it happened. He came running over to me as soon as he could, poor wee thing!

  27. July 7, 2010 / 5:52 pm

    Oh Maryilin. What a difficult day you’ve had. And your poor little boy too. I know I’m way down the road ahead of both you and Jen but I still remember the day we were given WiiBoy’s diagnosis 6 1/2 years ago. No matter that you can guess it’s coming or that (in our case) you have to fight to get someone to listen to you it is heartbreaking to have your fears finally realised.

    You will get yourself together on this. You will. Diagnosis means SERVICES. Well, it does in Ireland so I’m sure it’s the same for you! With services comes (hopefully) improvements. You are already experiencing some of those! They will be teensy weensy need to look back over the last few months improvements….but they’ll be there. I hope that very soon your current tears will be replaced by tears of pride and joy at the improvements to follow.

    Feel free to browse through my blog too. If you have food issues, for example, You might find my recent “From Food Diaries to Food Miracles” helpful.

    You know, anyone who has met WiiBoy would be very surprised to know that his expressive language is in the severe delay category and yet he’s now flying it!

    Sod the Doctor…in time Jay Leno and co may have to keep a good eye on their hot seats!

    meanwhile hugs from me…. (((xx))) Jazzy

  28. July 7, 2010 / 8:15 pm

    Big hugs to you. I am sure it has to be so shocking and you probably can’t wrap your head around it. He is lucky to have great parents that will give him the love and support he needs. You never know what the future holds for him and kids always amaze us at how well they do. Good luck 🙂

  29. July 7, 2010 / 9:13 pm

    Thanks Jazzy, I have in fact read the post you mentioned! I am hoping that one day Max will be the same instead of wanting chicken nuggets and chips all the time! lol 🙂
    *hugs*

  30. July 8, 2010 / 5:44 am

    Thanks for the hugs Tina. It’s been hard to get my head around, even though I *knew* in my gut that’s what it was(is?), but I’m feeling much more positive now. Better to know and get the right help in place than not! xxx

  31. July 9, 2010 / 12:06 am

    Thanks sweety, love straight back at ya. xx

  32. July 9, 2010 / 12:29 am

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  33. July 9, 2010 / 4:07 pm

    I’m so very sorry to hear this, Marilyn. I’m an Elementary Education major in college right now and one of the things that I think about when seeing autistic children is how their life will be when they’re older. And, while I know it’s upsetting to see that you might need to be there a little bit longer, these children are always the most sensitive children in some of the BEST ways and have some of the most AMAZING qualities.

    I’m sure it’s hard to appreciate the “up” side of things right now, but may you someday find comfort in knowing that there are so many wonderful things about your child that far outweigh this. You’re in my thoughts…

  34. July 9, 2010 / 5:02 pm

    Thanks Jessica, I’m feeling much better about it now having done some more reading about it, including finding some blogs who are written by people on the spectrum. Hearing their lives are going pretty damn well is a great thing to read! 🙂

  35. July 10, 2010 / 11:03 pm

    […] last week Max had his appointment with the developmental paed, and thoroughly hated it. At least he enjoyed the waiting room! This is […]

  36. July 11, 2010 / 3:20 pm

    Marilyn,
    As a mom who works with special needs children everyday, I want to tell you to stay strong and educated. The autistic population at my school are my favorites! They are very special individuals that are truly (sometimes brutally) honest, which I admire about them.
    Stay educated so that your son can get all the accommodations, supports, and strategies he needs to live a normal life and feel a part of a community instead of an “outsider” due to his PDD. And be thankful that he has been diagnosed so early in life! Some people go years without knowing why their child is different.
    I look forward to following your journey, so please keep writing about it.
    🙂

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