School holidays……..

 

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The last few days have been testing, to say the least, and not just from Teddie- the older two seem to think we are on an all-inclusive holiday.

Harvey needs a new bike as the make we got him for Christmas isn’t in with the crowd, luckily for Harvey, his Christmas bike was showing signs of a fault so it was exchanged for the better make yesterday (with a considerable amount more to pay)

Teddie seems to be moaning at everything of late his cry is like a knife cutting me in half, Think I’ll go watch wonder woman and see how she manages it all.

This morning Harvey left the back gate open after his paper round it’s not something he would normally do but he was in a rush to get to his friend’s pool party (if only hay) I heard a very high pitch bark and knew Sonnie had got out.

Luckily Sonnie wasn’t hurt he was just scared and hiding by our front door as a lady was trying to approach him to see if he was ok.

I felt sick to my stomach of the thought Teddie walking out & going off on a wonder. I sat in the downstairs’ toilet and just sobbed, it needed to be done in all honesty.

I have felt so under pressure with a million of things, this was the final nail in the coffin. I knew Harvey would be upset by what had happened and what could have happened to Sonnie or Teddie. I told him he needs to constantly look at the bigger picture, had Teddie walked off he would have never been able to tell anyone where he lived or what his name was (although most of the neighbour’s know him, it’s beside the point)

Every parent can relate to when you have a baby you cannot just leave the house without making sure you have everything you need for that day, It normally involves taking half the house with and you will still forget something. Having a child with special needs is very much the same but without the bags. Going out can be very stressful for everyone but mainly for Teddie.

We took all 3 boys to see a car show my husband’s company had put on, Alfie was so excited to see all the sports cars, we made Harvey come as he seems to think he’s a lodger now & always busy.

Teddie was fine until we got out of the car, he cried from the minute we shut the door behind him. It was an area he had never been to and looked so scared. Gareth held him nearly the whole way round, in hindsight, we shouldn’t have taken him but we just didn’t know if he’d like it or not.

As soon as we approached our car, Teddie got down from Gareth, walked the rest of the way feeling safe knowing daddy’s car was in sight.

I still completely forget at times that Teddie might be affected by the choices we have made for a day out.  It’s so hard not to get cross with Teddie when the other two are having a good time and he’s not, the fact is Teddie is different from the other two and steps have to be made to help him.

I have always said new environments are not an issue for Teddie but when I actually think about it there not new environments. Teddie new school he’ll start in September isn’t new as his brother goes there, his preschool: We pass it on walks nearly every day, Doctors & hospital appointments: he’s been in and out since he was a baby. Although the situations are new the environments aren’t.

Teddie, Alfie and I went to the beach over the weekend, the weather was lovely and both boys loved the water and played in the sand with their cousin Lillie. Teddie didn’t have a care in the world, didn’t cry once, he was happy in his surroundings and felt safe to leave me and play.
Beach life it is then……….

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We love our Bear and wouldn’t have him any other way!

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A change……

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The walk to school is normally very peaceful with us both just taking in our surroundings while holding hands. Today Teddie was especially clingy, he wanted me to carry him- My back just couldn’t take that.

A few times I turned away from him and did an air scream so I didn’t show how annoyed I was becoming, At times I just wanted to shout

“What”

but that really wouldn’t help & would only make it worse. It’s very rare for him to have days like today, I haven’t seen him like this in a long time.

This morning Teddie cried for me when I dropped him at preschool, first times he’s done this. I think its a mixture of him being tired from the constant coughing and it is the last day of term- we are all feeling it!!

Leaving him is always hard but today it’s been made much harder. I wanted to hang around to check he settles but I know it wouldn’t help the situation as I’d only have to leave him again once he does settle’s.

We have seen a slight change in Teddie of late, again it may be his cough but I cannot put my finger on it.

My parents bought Teddie a Kindle for his birthday, as it is new we have let him go on it a lot. I have been wondering if the Kindle is causing the change in him? He only watches preschool learning videos or his gemiini video’s but still, he’s been on it a lot.

Think we will reduce the amount of screen time and see if that helps, best to cover all avenues.

We love our Bear and wouldn’t have him any other way.

The birthday boy….

 

Yesterday was Teddies 4th birthday, the night before it dawned on me that he didn’t really understand it was going to be his birthday. Everyone was saying “birthday boy tomorrow”,  “no” would be Teddie’s reply.

Teddie woke early, as he always does. We greeted him half awake with birthday celebrations, to which his reply was still “no”. He was overjoyed to see his present’s downstair’s, after opening his gifts we changed this age on his all about Teddie board.

He had a lovely day at preschool and ended the day with all the family coming over for a BBQ. When I put him to bed he started to sing the happy birthday song, it brought a tear to my eye as I really thought then he knew it was his birthday.

I’ve been looking back at all his picture, he just cracks me up with what he used to get up to, One of my favorites was when I planted all my bulbs in the garden only for him to dig them all out and put them on the lounge table.

Life with a bear is as always eventful but I would never have it any other way!

 

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The Anxious Parent

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The children are staying with my parents this evening, so Gareth and I are hitting our village pubs. It’s something that has been arranged for a few weeks but this morning I have that knot in my stomach and the realisation that Teddie is staying out.

I know he’ll be fine as he’ll be with his older brothers, they both know how our system works with Teddie but still makes me sick with worry.

Even without having complex needs everyone runs their house different and although this is my parents, The boy’s grandparents, I still worry.  Teddie see’s my parents all the time, either at our house, at theirs or on days out but hardly ever on his own-, he hasn’t stayed out for nearly a year (nor has the older two), He loves my parents, and I know he’ll be okay but I worry he’ll get upset.

I’ve always had major anxiety but only ever towards the children, It’s always been at its worse when the younger two boys have each been around the age of 3, (strangely never had it with Harvey, at that age)

If I knew my mum was taking Alfie out then I was at work, I would phone in sick- Every possible Scenario would flash before my eyes and I would go to bed worrying sick about “what may happen” and end up keeping him with me the following day.

It’s really hard to find that line between trying to be a “super mum” and being a wife. I give my everything to all 3 of our boys, but of course, Teddie gets the most attention- just because he needs that extra time to digest the world around him.  I see in Gareth’s face & voice at times the disappointment because I’ve changed my mind on having an evening out because it means the boys are staying out.

I felt my anxieties had just eased off as Alfie got older but then Teddie came along- Him now having complex needs really doesn’t how I feel as all them Scenario could happen so much easier with Teddie as he see’s the world different from how Alfie did.

The issues I have are my issues and I never let the children see me worrying as it’s not their burden, but I know my husband can- I know my family can, I know they think I think they can’t look after the children Especially Teddie- I know they can but it doesn’t stop me worrying.

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The anxious parent

 

 

Teddie has had another review with his speech and language therapist who has said he can move onto phase 3 of pecs, although in my opinion he’s more liking to be working at phase 4 level now.

There are six phases of PECS:

  • Phase One-  The Physical Exchange: Upon seeing a “highly preferred” item, the student will pick up a picture of the item, reach toward the trainer, and release the picture into the trainer’s hand.
  • Phase Two- Expanding Spontaneity: The student goes to his/her communication board, pulls the picture off, goes to the adult, and releases the picture into the adult’s hand.
  • Phase Three- Picture Discrimination: The student will request desired items by going to a communication board, selecting the appropriate picture from an array, going to a communication partner and giving the picture.
  • Phase Four- Sentence Structure: The student requests present and non present items using a multi word phrase by going to the book, picking up a picture of “I want,” putting it on a sentence strip, picking out the picture of what is wanted, putting it on the sentence strip, removing the strip from the communication board, approaching the communicative partner, and giving the sentence strip to him/her.
  • Phase Five- Responding to “What do you want?” The student can spontaneously request a variety of items and can answer the question, “What do you want?”
  • Phase Six-  Responsive and Spontaneous Commenting: The student appropriately answers “What do you want?”  “What do you see?”  “What do you have?”  and similar questions.

We have everything he needs in regards to pecs images but it was felt it needed to be more consistent with what he has at home and preschool. Again I think everything we are currently doing is working but I take everything on board and was told we needed a more mobile pecs board, so I ordered another board and added a “I want” and “please” to the front.

Pecs is not instead of talking but it is hard to use the correct way when Teddie says certain words rather then get a image of it.

During snack time at preschool the offered snack it laid out with a card showing how many of each snack the children can take. From now on instead of Teddie just taking what is on the card he has to get his PECS card and use them to basically ask for what he wants.

I can see why it’s important for him to do this but when the snack is help yourself, using Pecs may become difficult if there’s know one there to oversee it.

We had a break through this week, I managed to send Teddie to preschool without a thick jumper one, it’s been really warm outside and incredibly warm inside school but Teddie was still insisting on wearing his school jumper!!                                                            I set up a reinforcer which came in the form of a ice pop, I would have given him the whole box if needed, luckily It worked after one and for the last 3 days he has gone in without it, but know one is even allowed to whisper the word “jumper”!

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Social stories

Of late Teddie has been really sensitive to change, Like today Gareth, my mother in law and I took him out to one of our local garden centres. As soon as my mother in law got into the car (Where Alfie normally sits) Teddie had a meltdown! He spent the whole car journey crying, saying No and pointing to his nanny. (sorry nanny)

We took Alfie out of his car seat as he was over the height he needed to be in one, gave his seat to Teddie as he had outgrown his. Since then Teddie got so upset when Alfie hasn’t got in a car seat. It was really sweet as first but it’s now starting to grate a bit (just being honest).

A friend who is a Senco at one of the preschools in our village mentioned using social stories to help him when he’s feeling distressed, so out we went today to get supplies. Have looked online and done the research before I started something I couldn’t follow through with.

We are ready to start as and when we need to, will keep you all posted!

Carol Gray

Social stories

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life with a bear

 

 

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It’s all starting to feel real now, the process of Teddie starting school has begun. He has taster days most Friday afternoon’s from this week.

I have mixed emotions about it all, to be honest, I always underestimated Harvey and Alfie when they started school, there was so much we didn’t let them do at home as we had concerns, only for them to be doing in school.

If I am completely honest I am not worried at all about the actual transition process of school, I know he’ll love it, I’m so worried because he won’t have me!

I have been Teddie’s interpreter for 3 years, I know what will make his sad, how he will react and the order he likes things in.

I have written before about how I felt about Teddie starting preschool, I am already feeling the same about school as he is more vulnerable than most children. Although I have no real concerns about his abilities in the classroom, I am worried about lunch & playtime, will he have them friendship groups??? The thought of him on his own makes my heart break!

There was a time when I felt like I was running into a brick wall, I just didn’t know what I could do for Teddie, Here was this beautiful boy who was driving me insane with his constant pulling me towards things. I felt so guilty for getting so mad at him but I just didn’t know how to communicate with him. Obviously now it is a completely different story, The hard work Teddie has put into communicating is something to be proud of but even now he still needs so much help.

Teddie has a section 23 of education notification which is: Health professionals have a duty to tell the local authority they believe a child under school age has or is likely to have, special educational needs or a disability (SEND). Usually, this notification is made by a Paediatrician or designated medical officers, who must in the first instance:

  •  Inform parents that they believe their child has (or is likely to have) SEND
  •  Arrange for parents to discuss this opinion with appropriate health professionals #
  •  Inform parents that they have a duty to notify their child to the local authority
  • Advise parents of organisations that may be able to support them in relation to their child’s SEND.

Children on the spectrum have difficulties with interpreting both verbal and non-verbal language like gestures or tone of voice. Many have a very literal understanding of language and think people always mean exactly what they say. They may find it difficult to use or understand:

  • facial expressions
  • a tone of voice
  • jokes and sarcasm.

Some children can also experience over or under-sensitivity to sounds, touch, tastes, smells, light, colour’s, temperatures or pain.

When Teddie was a baby, there were times when he couldn’t be in the same room as my niece, He was so sensitive to her cry it would literally scare the living days out of him, Teddie is very sensitive if he hears a hand dryer in a public toilet, although most children of his age are sensitive to dryers, Teddie’s experience of the hand dryer has made him refuse to go to the toilet if he even sees one in the room.

A few months back Teddie and I were waiting for the disabled toilets in M&S, I knew the room didn’t have a hand dryer in there so Teddie wouldn’t get distressed when he went to the toilet. while waiting we were approached by an older lady who came and stood directly in front for us queuing. I told her we were waiting for the toilet, her reply was “Well I’m disabled”. For a second I wanted to jump down her throat but I just replied with “How do you know me or my son are not disabled? just because we don’t have a walking aid like you, you should never assume!”  I have since contacted M&S and told them they need to look at their labels on their toilets.