Yesterday was Teddie’s fourth birthday. The night before it dawned on me that he did not really understand that it was his birthday. Everyone said “birthday boy tomorrow”, “no” was Teddie’s response.

Teddie woke up early, as he always does. We greeted him half-awake with a birthday celebration, to which he still replied “no”. He was overjoyed to see his present downstairs. After opening his gifts we changed his age on his all about Teddie visual board.

Teddie had a lovely day at preschool and ended the day with all the family coming over for a BBQ. Teddie loved opening all his cards and presents, by the end of the day he was partied out. As I snuggled him in bed he started to sing the happy birthday song, it brought a tear to my eye as I knew then he understood it was his birthday.

I spent the rest of the evening looking back at old pictures. I laughed out loud as Teddie cracks me up with what he used to get up to. Even though he has his struggles he has a great personality that invites everyone to love him.

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

The children are staying at my parents’ house tonight, so Gareth and I are going to the pubs in our village. This has been planned for a couple of weeks, but this morning I have this knot in my stomach and the realisation that Teddie is staying away.

I know he will be fine as he will be with his older brothers. They both know how our system works with Teddie, but I still worry. I remember how I felt when Alfie was Teddie’s age so I think it’s less to do with Teddie’s needs and more to do with mine. My mum used to look after Alfie while I was at work. If I knew my mum was going out with Alfie while I was at work, I’d call in sick – all sorts of scenarios would pop into my head and I’d go to bed worrying about ‘what might happen.

I felt like my fears eased as Alfie got older, but then Teddie came along. The fact that he has complex needs now does not change how I feel because all these scenarios could play out much more easily with Teddie because he is more vulnerable than Alfie ever was.

It’s really hard to balance trying to be a ‘super mum’ with being a wife. I give all three boys my all, but Teddie of course gets the most attention – simply because he needs that extra time to process the world around him. Sometimes I see the disappointment in Gareth’s face and in his voice when I change our plans because I cannot leave the boys.

I am conscious of how my worries affect the boys, while I like to keep my feelings to myself I do worry I am projecting unnecessarily anxieties onto the boys.

The anxious parent

Teddie had another meeting with his speech therapist who said that he can move on to phase 3 of PECs, although in my opinion, he should now be working at more of a phase 4 level.

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 terms of pictures of pecs, but we felt it needed to be more in line with what he has at home and at preschool. Again, I feel that everything we are currently doing is working, but I take everything on board and was told that we needed a more mobile PECs board, so I ordered another board and added an “I want” and a “please” on the front.

As a reminder, PECs is not be used in place of speech, instead, it works longside it. It is however, becoming increasingly difficult to use them correctly, as Teddie tends to use certain words instead of getting a picture to form a senstance.

During snack time at preschool, the snack provided is laid out with a card stating how much the children can take of each snack. It has been suggested that from now on Teddie will not just have to read what is on the card, but that he will have to take his PECS cards and use them to ask for what he wants. I can understand that it is important for him to do this, but if the snack says “help yourself”, it can be difficult to use PECS if there is no one there to supervise him, which can cause unnecessary stress.

This week we scored a victory. I managed to send Teddie to preschool without a thick jumper. It was really warm outside and incredibly warm at school, but Teddie still insisted on wearing his school jumper!
The school jumper is part of his uniform, so in Teddie’s eyes, it must be worn. To distract Teddie, I gave him a small ice cube and we went without it.

PECS uk

lifewithabear

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

autism speaks

life with a bear

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.