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All posts for the month November, 2011

#Special Saturday – Communication

Published November 25, 2011 by swanfreddie

So Freddie and communicating were not 2 words I would of used together.

When I initially saw this weeks Special Saturday topic I thought I wouldn’t bother as Freddie doesn’t communicate.  He doesn’t talk, he doesn’t babble, he doesn’t point to objects that he wants or even do something as simple as laughing. But I suppose in his own way he does try to communicate.

To start with he smiles. But it’s not just any old smile its the most heart melting smile ever. That smile to me is the way i know my boy is happy and content. His smile makes me smile.

Secondly he blows raspberries. He will happily blow these all day long. When its nappy change, milk time, puree time, play time, bed time…blowing raspberries is what Freddie does when hes happy.

And finally the last way he communicates is by a very loud shout. When hes upset he doesn’t cry…not sure why but he doesn’t seem to be able to cry properly but instead he almost screams over and over.  This is how he tells me that hes sad or hurting.

So Freddie might be 18 months old and doesn’t  know his own name or babble, or point to an object, or say mama or dada, or string words together, he might not follow any instructions or understand the meaning of any words and he might not be able to laugh and find things funny but in his own little way he communicates.

We have seen SALT a few times and they have told us that Freddie appears to have little understanding of his world so they don’t expect him to start talking anytime soon. They have suggested baby sign classes for him which we are waiting to start and to try basic makaton at home. We try to do signs for milk and food but he doesn’t look at us very often so its hard to do it with him.

My biggest struggle with his communication is how other people will deal with him. From a simple smile or shout i know what he needs. But other people don’t understand him. When out and about in public  people will smile and wave at him and say hello and I feel so awkward when he doesn’t even acknowledge they are there.  I find I dread other people trying to communicate with him.

Hopefully one day he will learn to communicate as a child should do but for now a smile, a raspberry and a shout are Freddies special little ways of telling me how he feels.

Little video of Freddie communicating whilst playing

#Special Saturday – What am i thankful for?

Published November 19, 2011 by swanfreddie

I’ve spent 17 months totally blinded with grief, resentment, anger, frustration and depression. I barely think about the good things in life as i’m so consumed with all the stresses that come with having a child like Freddie. But thanks to him I feel I have changed as a person.

I am thankful for being shown what is really important in life. It’s not about how much money I have or what clothes I wear. It doesn’t matter to me anymore what other people think of me and my family. I no longer care about doing my make up before I leave the house or what my hair looks like. These things are so unimportant to me now.
I am so thankful for Freddie showing me that life shouldn’t be taken for granted. When I watch my little boy I feel so proud for everything he has achieved. For other people it may seem like only small acheivements but for me watching Freddie wiggle on his back across a room is amazing. He may be 17 months and not crawling or walking but it’s time to ignore these milestones and allow Freddie to be his own person. He is unique and I am thankful to be able to go into Freddies little world and spend some time there with him. Not many people will ever enter Freddies world but it’s a fab and happy place to be as far as hes concerned.  Not many people can be happy staring into space blowing raspberries…but to Freddies is great and i’m thankful he is happy.

I am also thankful to his big sister for loving him for who he is. She adores her baby brother. They may not have a proper brother and sister relationship but Evie still thinks Freddie is great. She loves spending time with him in his sensory room and she always brings him toys when hes sad. Every morning when she wakes up Freddie is the first person she asks to see. She helps to tube feed him his milk and his medicines and if hes sick shes the first to go over and start clearing it up. I am so thankful she is patient and doesn’t resent Freddie for all the time i have to spend away from her to be with him.

I am also VERY thankful for him lying in till 9am this morning 😀

Finally some help

Published November 17, 2011 by swanfreddie

Today we had our first appointment with our community paediatrician. I didn’t have high hopes that he would help us in anyway or tell us anything we didn’t already know. After 17 months of no answers you start to become fairly negative towards these appointments….but he was actually FAB! and spent 1.5 hours talking to us and actually offering help.

He went over all Freddie development, his feeding, his meds and finally what he can offer us –

  • He going to sort us out with a hearing test to to make sure they haven’t missed anything there that would explain his lack of communication.
  • Get in touch with our health visitor to get her to offer more help.
  • He is going to write to the complex health care team for disabled children to see if they can offer us any support.
  • He is going to contact the social worker team for us to see what they can offer.
  • He has changed some of his medicine doses and given us a new one to try.
  • He spoke to us about Freddies odd sleeping pattern and is going to review him in a few months and perhaps introduce a medicine to help regulate his sleep.
  • He then went over what developmental milestone Freddie had met so far and thinks his development is functioning about 12 months behind where he should be. (Not really what i wanted to hear but it was almost a relief for him to tell me and not just give me the whole he will cacth up speech) To try and offer Freddie more therapy and give me a break he is going to have a look at what sort of nursery package they can offer us.

Throughout the whole meeting Freddie just sat in his own little world blowing raspberries, constantly fidgeting and his eyes kept crossing. He had no idea what was going on around him. It’s time ‘s like that where you see how he can never be expected to become a ‘normal’ boy. The severity of the whole situation really dawned on me.
Last night i had a dream & Freddie got his new Piedro boots(which we are getting next week 😀 ) and as soon as he put them on he got up & just walked! I felt so happy and relieved that these boots had made such a difference…then i woke up & got my little Freddie up and & did his milk & meds tubing, got him dressed while he blew raspeberries all over my face and wiggled round and round in circles. The routine i do every single morning without fail. If only dreams came true!

But overall it was a really positive meeting. I feel like help is finally on the way for us all!

Focusing on what Freddie can’t do

Published November 11, 2011 by swanfreddie

So i’m sat here at 8.30 on a Friday night after a very busy day, made worse by my lovely 2 year old daughters constant tantrums, attempting to write Freddies request for a child in need assessment.

What can’t Freddie do….Would probably be easier for me if i could put what he can do. May sound like a negative thing to say but as i’m sat here listing all the things he can’t do i am starting to wonder what he actually does do with his day.

He likes to wiggle around alot – hes getting really fast now which makes getting dressed & doing tube feeds & meds very hard!

He likes to pull my hair

He likes to be sick all over himself – particularly when hes just had a bath & has nice clean clothes on

He likes to blow raspberries all day long – especially when i’m feeding him a puree so i end up covered in food & he ends up covered in his own spit

He likes to rock back & forth in his highchair as it makes a loud noise

He likes to cry everytime i take him shopping

He likes to touch plants

He likes someone to just sit with him & show him different toys even if he doesn’t quite understand what to do with them

He likes sitting in his big boy chair in the bath & splashing the water so much that my bathroom floor is like a river

He likes to have a big long afternoon nap all snuggled in his sleeping bag

He likes having tea parties with his big sister! ( I do lie, it was very forced upon him)

Freddies list of what he can do isn’t long. Its not what he should be doing. He should be running around with Evie causing all sorts of havoc but hes not & this is just the way it is. So this request for a child in need assessment is the next step for us i think. I’ve had some lovely people helping me with how to go about writing it. I can’t thank them enough for all the support they have given.

Earlier today it dawned on me slightly the impact Freddie has on our family time together. Evie was going out with her daddy for a few hours & as we were getting dressed i asked her where she was going. She said “on the train” then went on to ask ” are you coming too mummy?” & i tried to explain that i couldn’t come because i had to look after Freddie & she just said ” shall i look after Freddie too?”

I would love so much to take us all out on the train, a nice family day out . To show them both the trains & see them both really excited by it. But if we did attempt this we would have to take all Freddies medicines & food & tubing equipment, Freddie would just sit in his pushchair unaware of what was happening, then he would start crying to the point where he becomes inconsolable, so we would go home & then Evie misses out on the nice day she deserves. It’s just not worth the hassle & stress. Maybe getting this statement done will mean i get a short break from Freddie so i can have some quality time with Evie without it being overshadowed by Freddies needs. But would i just spend that time feeling incredibly guilty for leaving him out of family time & would i feel that  i’m saying my son is a burden to us?

All i do know is that i love him so much & his gorgeous smile is enough to brighten my down days.

 

 

#Special Saturday – Christmas gifts

Published November 7, 2011 by swanfreddie

Buying Freddie presents for Christmas this year has been hard. Last year i hadn’t quite realised to the extent his developmental delay was going to affect him & i bought him toys that were way above his ability. Even simple toys like the push & go cars where he only has to push a button for the car to go were way to hard for him. So we have a big box of toys in his bedroom waiting to be played with.

This year i found quite hard. All the toys i was looking at were in the from birth age range. This made me feel really scared to think that he was that far behind. As Freddie doesn’t pick up toys properly yet i needed toys that could be batted at or spinned, his favourite thing to do. Any toy that can be spinned goes down well with Freddie!
I’m far to organised when it comes to christmas & started buying in February! Freddies sisters pile of presents got bigger & bigger but i really struggled with Freddie. I have managed to find him 7 presents i think he will like. His main one is a sensory ball pit as he loves batting at balls. I also got him a music maker toy from ELC, a Tesco little steps activity centre which has a big roller at the front, a train with some blocks on the back, a Fisher Price laugh & learn clock, Fisher price sing along stage which has a big mirror for him to sit & look in & a playskool gears set which has lots of bits for him to spin! Im also hoping to buy him a few sensory toys to encourage him to hold things in his hands & a new light for his sensory room.
I do feel awful that his sister will have piles of presents & Freddie will have a few but it just seems such a waste of money to buy him things that he won’t use. I’d do anything to be able to buy him a big car garage or a football with a net & watch him kicking a ball around outside but what will be will be & i’m going to try my best to not think about what his presents should be like & just enjoy the day as best we can & appreciate him for who he is.

Too quick to judge?

Published November 3, 2011 by swanfreddie

Today we had a routine hospital appointment with Freddie. Whilst we were sat in the waiting room I noticed this little boy playing with some toys. As I watched him play I suddenly noticed that on his t shirt in big letters it said ‘I AM AUTISTIC PLEASE DON’T STARE’. I was so bewildered to think that this small boy was walking around wearing this autistic label. His disability being highlighted to everyone. I don’t think the child would of been old enough to understand quite what the t shirt meant but I don’t think that walking around wearing something like that can be good for anybodies confidence & ability to get on with a normal life. If I hadn’t read this message I would never of known this child had any type of disability.

Now since I’ve had Freddie one thing I’ve learnt is never to judge anyone. I came out of the hospital almost feeling guilty for judging this boys mum for putting this t shirt on him & it made me think back to a few weeks ago where having a t shirt like that would of saved some awkwardness on my part.

We were in A&E with Freddie & I was approached by a lady & her young child. I did my best to avoid talking to this woman as Freddie was suffering from suspected epileptic fits & I wasn’t in the mood to talk to anyone. But she came over & started chatting anyway. “How olds your little one” she asked. Freddie was sat on my knee staring into space at the time & when I replied he was 16 months she looked so shocked. Then she started on about how fabulous her 13 month old was doing & how he’s so great at walking & talking. Not a nice thing to hear when your child can’t even bare weight on his legs or babble. She then went on to ask if the reason Freddie was in A&E was down to the fact he had bumped his head, as he has a red lump on his forehead. Luckily I didn’t have time to tell her the red lump was actually down to issues with his skull growth & may need major surgery next year on it as the doctor called me to be seen. Maybe if I had a t shirt on Freddie saying he has unknown syndrome & severe global developmental delay she may not have started questioning me & made me feel so uncomfortable. Maybe the reason this lady had this t shirt on her son was because she was sick of people staring & muttering about her sons behaviour. There’s been times I’ve seen people stare at Freddie & I’d love to just let of some steam on them. Who are they to judge me & my family & who am I to judge this little boy & his family.