CDC Take #2

I’m really not sure how I feel right now, what thoughts are going through my head or how I’m even expected to feel. I just can’t pin it down to one feeling.. in all honesty, I’m feeling a lot of them all at once and it isn’t doing my head and heart any good at all.

We arrived 10 minutes before the appointment hoping that it would help to get Dylan settled before the appointment.. but boy was I wrong. He screamed the place down and continued to do so for the 15 minutes late that our appointment was too. The lady then came to get us and said she had heard him from when we had come in. (thanks for making us wait then!) We then went into the room with the other therapists and it all started to become very real.
When we went in Dylan was not a happy bunny, pulling us by the hand to signal he wanted to leave, screaming and standing by the door. Thankfully the speech therapist remembered that he loved pop-up toys so she brought this out to see if it would settle him. He settled for a little while then she tried to remove this to encourage him to try something else with another of the therapists there.. but he just wasn’t playing ball. He settled after a while with some coloring and posting games, typically he was very happy when it was time to leave.

As all this was going on, I was having questions thrown at me left, right and center. Well no, they were very good at making sure they didn’t talk over anyone or myself, but I think it’s because I was the one in the firing range it just felt far too much. She was asking if this was how he got on when he goes into new places, how he had improved and I told her with a smile all the improvements I had felt he had made and she half smiled and told me they were great. Unfortunately though they all veer down a very obvious path and not the path that you want your child to travel.

The first thing that we got ticked off her list of things to get sorted was an education plan. She said that she didn’t think he would cope in a mainstream school even with a 1:1. She said that she would worry about his safety and that it just wouldn’t suit him at all. So all the information for this has been sent off and we are just to await an appointment of when to go and see them for them to write-up a report.
If I was being honest with myself, I knew this was going to be the outcome. Though I was living in hope, denial and wishful thinking.

The next part did shock me, I knew in my heart and my head that he was autistic, it was blatantly obvious. She had told us at the previous appointment that what she suspected was autism but he was too young to say for sure; but she told us at this appointment that; yes it is autism and that he is severely autistic. She said that he ticks every box for classic autism. It was a shock how she described him as severe, but when you look at it from a realistic point of view, he really is. Everyday life is a real struggle for him, and clearly something he doesn’t particularly enjoy when you are taking him out of his safe spaces.

My emotions are everywhere, I have written this post still feeling numb, unsure and disconnected from my emotions, because right now I’m really not sure where they are.
Friends & family keep asking how do I feel, honestly, I really don’t know right now.
I’m trying to make it to the next day with a smile, trying to stop it from sinking in. I don’t know when it will sink it, it may be in a matter of days or months but I know when it does I wont be someone you want to be around. Well, more I wont want to be around anyone. I will hide away and more than likely my hubby will need to take time off work to help me through this.
It’s not a simple path that we are going to walk, I’m going to fall off the wagon and right now; it could be any moment.

It’s a huge thing, it’s life changing not just for Dylan, but for the whole family.


22 thoughts on “CDC Take #2

  1. I send you the biggest hug I can give you. It’s hard when you already kinda know the answer but still have that little flicker of ‘hope’ that it’s not. I understand the numb feeling. Just give yourself time to feel whatever you feel x

    Liked by 1 person

  2. There are no words for when those official types tell us the official words we know but never wanted to hear. I’ve been there, and it hurts deeply. But what I want to reassure you is that Dylan’s story is not written with that diagnosis–his life sentence hasn’t been handed down. He is still your precious little boy. No diagnosis will ever change that. He will always need you, his father, his siblings and other family members to be his sure foundation of loving kindness in his often chaotic world. He needs hope as surely as you do, and you will find the strength to give it, I know you will. This special needs mama is praying for you.

    Liked by 1 person

  3. You can do this. We have a whole house of people on the spectrum. It’s crazy, It’s awesome, It’s a hot mess. Develop a sense of humour and learn the tricks. There will be a new one every day. It. Will. Be. Okay.

    Liked by 1 person

  4. It must be so hard. I have a nephew and great nephew with severe autism and getting the original diagnosis was so hard. They both had to fight to get it but once the diagnosis is made there is help out there and some wonderful schools. You will get through it with the help of family and friends. Big hugs from me.

    Liked by 1 person

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  6. I know how you feel, it’s such a difficult time when you get a diagnosis like this and it’s bound to hit you hard. Just keep remembering that he’s still Dylan and still your beautiful little boy. Times will more difficult but they can also be rewarding. I have two autistic children and although they bring many challenges they also bring many smiles. It’s good to get a diagnosis so early on though because that means you’ll get the help you both need (although you may have to fight for it sometimes) xx

    Liked by 1 person

  7. Huge hugs. I know it must be very hard to see the light right now but you have got this. And no one can really tell you what will happen in the future. But whatever it is you WILL get through it together. xx Thanks for joining in with #spectrumsunday. We hope you join us again tomorrow.


  8. Please try to be kind to yourself and give yourself time to digest this information.

    Also remember nothing has changed. You have the exact same child you did before the assessment. You just have more information, now, to give him the support he needs.


    Liked by 1 person

  9. I’m so sorry you’re facing such a hard time. My youngest son has Down syndrome, and he wasn’t diagnosed until he was 6 months old. It’s hard to explain, but I kind of felt like I was grieving. It didn’t last long, but I felt that I was mourning the life he was meant to have. In time though I realized that nothing had really changed at all, not for him anyway. He was exactly the same little boy that he was before he was diagnosed, he was only better off now he was diagnosed because now we could give him what he needed. You’ll feel the same in time. Allow yourself to feel exactly what you are feeling without any guilt, it’s all a process but you will come out the other side stronger x x

    Liked by 1 person

    • Yes, I am excited to come out the her side.
      I love and adore him for who he is no matter what turns and twists we take!
      I’m so glad to hear you our out the other side! =D x


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