Sometimes I truly wish that I could get inside the mind of my son – not meant in any sick way or anything but would love to be able to hear what he think, how he feels etc because Tobias still doesn’t have any language, only using sounds but he’s also using the same sounds so it’s not like he make a certain sound for food or a certain sound for when he’s thirsty etc so it can make it a bit difficult at times to know what he wants but luckily I know my boy so well so am able to read him but when he throws a tantrum it’s very difficult to know why he’s throwing it & how he’s feeling so would be a gift to get inside his mind.
Some people say that we don’t always need to know what another one is thinking or feeling but as a mother to an unique child with no language it would be awesome to know how his mind works.
Sometimes when I look into my son’s eyes, I feel multiple feelings rushing over me – it can be happiness but it can also be sadness because his eyes are so deep & even though Tobias is only 5,5 years old, his eyes truly tells a story. He can look so charming & so happy but he can switch in a heartbeat & look very sad as well. Thank God, Tobias is way more happy now a days than he’s sad or angry but it still bugs me that I can’t figure him completely out – but maybe that’s okay that I can’t figure him all out, I guess we are all allowed to have “secrets”.
Have you ever tried looking into someone’s eyes & it’s like those eyes are trying to tell you something but you can’t figure out exactly what it is? That’s how I feel when I look into my son’s eyes – he have this very intense look sometimes & it’s like he’s trying to tell me something with his eyes.
I still think we can save Tobias’ language & maybe he will never be able to talk again but am still praying that I can teach him some way of expression himself.
When I attended the “sign language” course I was sure that would be the answer to my worries when it comes to Tobias’ language but because of his stereotype movements with his hands, he’s not able to make sign language with them & when I tried to show him my sign language, he looked the other way before I even was done – so sign language was definitely not the answer but we have tried at least.
I have started the Marte Meo therapy & so far it’s great.
Marte Meo is a strengths-based program – it looks at what a child can do, and where they might need extra support in their personal development. Its goal is to give parents (in this case: ME) a different perspective to help understand the meaning behind children’s behaviours.
Typical behaviours that usually carry a developmental message are things such as non-compliance, fussy eating, poor sleeping, and aggression. If parents can understand what the behaviours are telling them, then they can work out what their child needs to learn for their personal development, and what can be done to encourage and support that need.
Marte Meo relies on understanding through “seeing”.
Video footage is taken of the child and parent(s) interacting together.
When the Marte Meo therapist have been here one day video filming, then she comes back & shows me the video footage & we talk about each sequence in the video & she gives me the tools to improve in my interaction with my boy.
We haven’t been trying this for long so it’s difficult to say if it will help us in a big way but at least it’s a good help to see how I handle my boy & how exactly he looks like when I for instance say; look, there is a bear (pointing in a book) because when you are right in the moment you can’t always tell exactly how your child reacts. But I truly hope this Marte Meo therapy can hold some kind of a key how to be even better in reading my son & his behavior.
In October Tobias & I are going to a new hospital, actually it’s the last hospital to look at my boy. Well the doctor at this hospital already told me that he really doesn’t think he can help either in finding a diagnosis or help for my boy, so guess after this visit we are taking a long break from hospitals. I am terrified that the doctor confirms what he already told me especially because the American doctor I’ve been in contact with, never responded back all of the sudden so guess he’s without a clue too. It is very safe to say that in this case, only God knows the true answer & only time will tell me what we have in store. Hopefully something good.
Many have told me that we can never know our future & we really shouldn’t etc & I do agree that we CAN’T know our future but I sometimes feel like I would be better off knowing what’s in my son’s future but then again maybe I am better off, not sure how I feel about not knowing.
But I do know how I feel right now; I love my son endlessly! & I will never be defeated. I will always go beyond my ways to seek for the right help & I will NEVER give up on my son & I know that most parents would never give up but what I mean is no matter what I will always try to get Tobias to develop as long as he’s happy & smiling when doing so.
But gosh, it scares me so much that so little has happened the last year but then again, Tobias is getting so good at keeping eye contact & he smiles a lot more than he did a year ago so that definitely counts for a victory!
Tobias is a true fighter & so am I!