22

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.

-WeeOhana

14

Being Positive is Tough!

As a parent you are expected to always be positive, happy go-lucky and love everything that you do in your life that involves your kids. When you are with you kids or even around other kids, or any human really you are expected to have a smile, have lots of gossip to share and happy stories. Is parenting really all positive and great fun though? A simple answer no; no it isn’t.

Being a mum, a parent is really tough. I am currently a stay at home mum and  it is really tough, tougher than most jobs. You have to have a smile, willingness to do arts & crafts, answer 1000 questions, wipe bums, make snacks, do baking, colour, read books, play pretend, cook dinner, recook dinner as they changed their mind, and many other things.. all on a daily basis. You have to do all this while doing a dance or singing or whatever other thing your child enjoys and when they eventually go to bed and fall asleep you’re so mentally exhausted from keeping up this positive persona that you yourself are exhausted or you end up just sitting watching some mind numbing program on T.V.

Then when you see friends, especially friends who have children you are expected to gush to each other over how wonderful you children are, what new things they have learnt and just why they are simply amazing. All while showing them the latest pictures you have snapped of them, for your friend to then tell you how beautiful and wonderful your child and you do the same to them about their child. Just being honest here, but as much as I love my kids, I would love to not have to gush over them especially if I’m with a friend. In-fact I would love to be able to be open and tell them how I am really feeling, the struggles, share the lows as well as the highs. Recently though anytime I have mentioned a low to anyone they always come back with “Oh it will be fine”, “You never know, it will all be OK I bet” and all that positive cack. Now, I am one for trying to keep upbeat about all that I have going on but some-days I want to have a moan and a cry about how tough it is, and I want to have a friend who will talk to me like it is real life; For them to help me accept what is going on in my life. To help me accept it rather than fill my head with fluffy nonsense and denial.

I’m going through a lot with my family at the moment and I have really realized who is there for you and who just wants to be your friend when it suits them. I have lost several friends recently, but hey. There loss right? I told a friend once we had been to the CDC clinic about Dylan how it had went, that they would need to discuss special schools etc next time we went back as he was too young .. her reply “Can we please talk about something positive?” … I know right! Well I just didn’t reply. It really upset me, when I needed a friend to chat to and really let my feelings out too, they blew me off. Acted like I was complaining about a stubbed toe or something. There we go though, that’s another example of why being positive and why being expected to be positive is tough. I’m sure any parent could see how this would be a hard, upsetting and life changing thing for me, but yet my friend still expected me to be positive? I’m sorry but that just doesn’t make sense to me.

So next time you see a friend,your partner, your parent whoever it is you normally talk too, tell them how it really is.If your finding something tough tell them, if you need someone to rant, rave or cry at. Do it! Please do not hold it in. If you don’t have someone you feel comfortable to do that with, I’m here. I’ll be your someone to rant,rave and cry at. Don’t be afraid. Head to my Facebook page and message me and I’ll get back to you as soon as possible. I hate to think of people holding all there true feelings in, these emotions and words that need out; let them out. Your mental health is very important, and if you go around always being positive, one day it will catch up with you, trust me.

I asked a few of my blogger friends; Why do you think being positive all the time is hard? Here is how they answered! =]

Amy who blogs at The smallest of things said- “Because sometimes they push me until I’m hanging over the edge!! 😂😂
(kids sure do have a good knack at doing that don’t they! They always know the right (or wrong buttons to press)

Jemma who blogs here said- “It’s just so draining. It’s like wearing your fake smile for people you don’t like. You only have to do that for a little while if you see them, but with your kids it’s 12 hours a day-non stop!
Don’t get me wrong there are genuine positive moments but the majority aren’t true and soooooo tiring!
(I couldn’t agree more! That fake smile has to constantly be there. It isn’t fun always having to play pretend!)

Samantha at Porridge and Parenting answered- “Because it’s impossible to be positive 24/7. You could be the happiest person in the world whose glass is always half full but that is unsustainable all day every day for the rest of your life and essentially you are a parent all day every day for the rest of your life.”
(Too right, it is impossible! One day it will wear you thin if you keep up the act!)

Helen from mumatron says “I think it’s hard because it’s unnatural. It’s more normal to show a range of emotions.”
(It sure is! We were given emotions to show them, not to try and disguise them as this wonderful happy, positive person when we are feeling quite the opposite sometimes!)

Sarah who blogs at Whimsical Mumblings replied with- “I broke down into tears the other day in front of my children, and felt SO guilty. It’s hard not to show these emotions as well as they good ones. I honestly don’t think we should hide them though! Show your little ones it’s ok to express your emotions.”
(Don’t feel guilty Sarah, like you say yourself it is important for our little ones to see all the emotions that we have and understand that we can show them whenever we need to)

 

Do you find there is anything you feel you have to be positive about when you really don’t feel that way all the time?
WeeOhana xx

 

 

18

The Start of a Long Journey

I’m not really sure what to write, or how to phrase what I write really, I just know that I need to write it somewhere as a place to get it out and as a sort of journal for what all is about to begin. Currently we are just starting a long journey with our handsome son to see what is going on with him. Our first step is Monday when he is getting seen by the audiologist.

I’ve had my worries about him for a while, but it took me  until a few months to convince myself that I wasn’t just being silly and there was something going on. I then decided to book a doctors appointment and went armed with a list of my worries and concerns about what was going on with him. I felt like a crazy mum going in with a list, but the doctor there knows me well, was very welcoming and told me he was glad I had a list so that I didn’t forget anything. So after him checking over my little monkeys ears/throat etc we discussed what I was worried about, he decided that we needed to get the health visitor over to see him asap and to get the ball rolling to sort things out with him. One thing he said that really got to me was that “he will either progress from here, or start to go backwards.”

After speaking to my doctor I was hoping to have a weight lifted off my shoulders and him telling me that I was just being silly, not to rush him and so forth but as you can tell, thats not how it went. I came home and got on the phone to the health visitor to get her to come and sort us out. I had to wait a week until she was available to come over, and I’m sure a lot of you reading this are parents and you know how long a week feels when you are in panic and upset about your child.. little did I know the waiting time of a week was the shortest I would endure in this process.

When she arrived she asked me what my worries and concerns were and we got to have a good chat as he was having a little nap. My worries were.. I suppose still are!

  • He doesn’t respond to his name, no matter how loud you shout it. Though hears things like doors creaking etc. At the start I was worried he was deaf, until I realized it was more a selective hearing thing. (this is getting checked on Monday though as they have to clear his hearing before checking everything else)
  • He is 21 months and doesn’t say a word, he babbles a bit, but no words or sounds that mean anything to him. He used to say dada/dog etc and knew what they meant.. now they have disappeared.
  • He tiptoe walks, a lot. Like right up nearly as high as he can get.
  • Extremely fussy with the foods he eats.. Doesn’t really like lumps or bumps in his food.
  • Doesn’t brings toys over to show me/his dad or his sister
  • Isn’t keen on his sister sitting beside him, when she does he will try to bite her/pull her hair.
  • Very little eye contact, or response to emotions from others.
  • Head banging against a wall/floor (very upsetting to experience =()

As I told her these she asked me had I been on google and were these all big worries or just little things.. when I told her that I used to work with children with additional needs she started to listen a little more, and then when he woke up and demonstrated to her several of these things she then said that I was right to have a list written. She then plowed on to serious mode.. She told me that she hoped she would come here and see him and tell me that she would come back and see him in a few more months and that he would grow out of the things he did. Unfortunately she told me this wasn’t the case and she wanted to write down reports etc and get them sent off that night to get him on the list to be seen by the child developmental team as soon as possible. . This was at the start of July.

I have had a lot of time to take it all in, think things over and over again, worry, get upset, get annoyed and most emotions possible really. This is a real tough thing to be going through and to be left in the dark with when the ball will start rolling. I have his audio on Monday so at least that is something but I am yet to have an appointment from the child developmental team. I am going to ask them when I am in on Monday if they have a clue about time frame.. I think the not knowing when it is all going to start is the hardest.. Especially when I know that when the ball has started rolling it wont be straight forward and that it will be a long time after many appointments to know what is going on.

As his mum, I just want to make it all ok everything be fine and one day for him to wake and to have came on leaps and bounds. Be talking and everything.. but as the days and weeks go past, I know that wont be anytime soon. It hurts a lot, but I have to keep my brave face on, keep smiling and positive for my family.

One thing I have found through all this though is that you constantly seem to be on the look out for things that are different/worrying/wrong etc.. So I have tried to concentrate on the positive and enjoy what makes him, him. The way when he laughs, its from deep within him, he has the most wonderful and infections laugh and when you have discovered what makes him laugh you can do it 1000 times over and he will find it just as funny as he did the first time! How when you hand him something new he will inspect it in great detail, turning it over and over again in his hands looking at all the tiny little details on it. That he empties out the whole box of hot wheels to find the one with the red roof and then will grab any other one to have one in each hand.. then will go to the table and play with them for ages without anything distracting.. unless his sister goes near him! 😛  That he will pick the tiny bits off the carpet and place them in my hand and will do this until he thinks they have all gone! When he climbs up beside his sister and for the brief moment will sit beside her and how excited and happy she gets by this, and how at the park he will find a bridge, and go back and forth across this bridge the whole time we spend there chuckling away to himself. He does a whole load more that makes me so proud and privileged to have him as my wonderful son. I love him, and I always will, no matter what the outcome is.

WeeOhana. xx