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

 

18 thoughts on “The Start of a Long Journey

  1. I am sorry your family is going trough this difficult time. As a mom myself, my heart goes out to you and I send you hugs and strength to get through the days.

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  2. I love your attitude and your tenacity; if the doc calls you hypervigilant, take it as a compliment! 🙂 Early intervention is key in these situations, so the fact that you’ve already got the doctor acknowledging what you see is a huge step. I understand the Mama heartache, but I’m so glad that you can see the gold inside that little soul. Don’t give up. These kids are beyond special. XO

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  3. Great story! Hope it goes well at the audiologist today. Your little boy sounds fab and you’ll do a great job at getting him what he needs. It also sounds like you’re ready to do all the chasing and following-up that we’ve had to, and that made a real difference for our boy, especially getting him the early help that he needs. If referral letters can go missing in between appointments, then they will! Just chase all the time if you find yourself waiting for appointment dates.
    It will stress you out (and you’ll need to perfect your poker face when folk ask if you’ve been googling too much – our house is like a library now!), but it’ll be worth it. Keep reminding yourself you’re doing a great job 😁

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    • Thank you very much! Sitting waiting to go in now! Scary!
      He is just fantastic 🙂 yeah I’m going to quiz them after he has been seen today about how long I should be waiting etc and if I wait a day longer I’ll be phoning and asking when I can expect to hear etc!
      I think we all fall guilty to googling a little bit.. it’s just natural to be curious and want answers!
      I’m doing the best job I can and thanks for the reminder when I needed it and about to go in!

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  4. After reading this it reminded me of what I went through with my son. Although, he was talking but stopped. I remember going to get his ear checked and all. I would suggest this, go to see a child neurologist. Just to be on the safe side. Just a thought. I pray for you and your son. We know our babies and know when things aren’t fight, but act now rather than later.

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