February 2020 Mum updates....

February mum 2020

Today I’m in my mind a lot. Watching people’s sweet littles hit milestones, do karate, ballet, have friends it is so sweet to watch them grown but hard to watch my precious little not progress into the stage of being 4.

So masking is up to 30 seconds still at 25 times a day. Trying to build up I feel like a failure a lot!!! When he gets frustrated I take breaks some days he’s all about it some days he’s not.

Potty training!!!Oh Lord that’s been hard ! People love to stare when I change my 4 year old with the eyes of disbelief of what the Hell is that mum doing not teaching her child too big to change on the changing table how to use the Loo, toilet, head or whatever word you might use for the dreaded bathroom! I’m trying you judgmental people! You’re child talks!!!! Your child can say hey mummy I’ve got to pee!!!!!! Note: non verbal children take longer to do EVERYTHING. Mummy I feel I need to use the bathroom... my child can’t feel like yours either NEWS FLASH!!!!! But.... I bet my child is reading better than your 4 year old! No can’t prove it but I promise his love for books the Doman program and my work has paid off somewhere!!! One day he will talk! So funny these same people judging me also say I wish you would just shut up! Well I just wish mine would talk non stop. Or how about the phrase life isn’t fair !!! That one really hits nerves for me!!! Well what’s not fair your child can cry, hurt, feel, communicate.

Mine doesn’t feel hurt, run fever, communicate he suffers but shows no suffering! Not a great thing! It’s called CIP(Congenital insensitivity to pain). But Liam doesn’t appear to have this full blown bc he feels something just not the complete feeling of pain. We are working on that it’s a process just like everything else is a process . We have sand paper, felt, silk, velvet. Scrub pads,rough brush and soft brush and we are working on him feeling the different things on his skin and working on training him to know the differences In different feelings. All of this works with the program I will post videos soon been working on them they aren’t easy since i and the one normally doing things hard to record myself . No I can’t use a selfie stick but yes I have one lol.

I think he does feel something he doesn’t sweat like you and he can get bit or fall and if he cries it’s normally because he’s scared not because it hurts. This is also common in Kleefstra kids I guess the missing chromosome is one that is in charge of shooting some kind of “hey you , you’re hurt cry already” signal that Liam doesn’t get!

When your child goes to school and the kids hit him, bite, punch or the teachers might not be so nice your little can come home and say mummy I don’t want to go back they are mean to me . Mine I don’t know and I have to worry , is he getting bullied. Is he ok? What happens in those three hours? Then you have kids in his class that maybe don’t behave so my child that needs help can’t get help bc of one child! Well our fabulous country yet again offers us help that’s NO HELP!!!! But again I’m ranting and I guess it helps me to get it out a little but I still sit and have all these thoughts.

Last night I had a nightmare I lost Liam at the airport he was thru security some how and I wasn’t !!!!! And since he couldn’t talk I had no way to find him. I could call out but he wouldn’t respond just like he rarely responds or comes now unless I say CHOCOLATE BUTTONS. Yes he can hear but he has selective hearing but he always hears that even if it’s just me making the sound of getting it out of the fridge so don’t let him fool you! Oh and Blippi he can hear that and fireman sam when you turn it on .... dead sleep he will sit straight up for those two programs ️...

Life with Liam is a lot of fun most days, he’s happy, silly , fun and just loves on you .... but it is so hard going out to eat and having people watch you feed your 4 year old and he makes all sorts of silly sounds and people just stare wanting to know what he has or what is wrong (the mom shame) (The American way) . The part of me that is bothered will sometimes lose my cool and say “yes he can’t feed himself he has a brain injury and rare disorder but he is trying and learning sorry it’s not your Normal setting and you are intrigued with my child not like yours!!!” Been tempted to print cards that say, “ I have Kleefstra syndrome I’m non verbal and can’t feed myself and don’t know the feeling of going potty to tell my mummy so please dont stare I’m trying , learning and growing just like everyone else just different and at my speed!” I don’t normally get to that point most times I just don’t eat get it to go and leave. We have our regular place to eat it’s one of the few I feel comfortable in bc Cim, Pud, Lupe and everyone love my liam! Ginger and Spice and their crew are like family they even let him go back and help some. Love the atmosphere and love how they love my Liam.

So Liam was nominated for a tiny super hero. Kind of excited we will be doing missions to get him patches for his little super Liam Cape! Something positive for him to hopefully love. Praying he loves the cape . You never know if he will love or hate things . We have been making book marks to bring positivity to others . Now hiding and giving them to people . I know something else for me to do!! Lol. At least it brings a little light to all the work and darkness I feel sometimes with the overwhelming feeling of failing my sweet boy. I pray I can do this and he will succeed! It’s hard to look at that sweet face and know I hold the key to unlocking what is in that sweet smart brain! Please Lord help me .

Love Liam Mum ...