Aug. 28.

Inappropriate Comments

Well it’s been the summer holidays. Sorry I have not written an entry for a while. It’s been very busy here, understandably. Daniel & Matthew have had a great time, I hope. I have taken them all over the place. But most notably, I have taken them a few times up on the Sussex Downs to walk the dog. They both love it up there. They can run around and chase the dog. They also like to meet other dogs and make a fuss of them. The only trouble is Daniel. He goes up to total strangers. He tells them his name and then asks them their names and where they live. Before you can stop him. Then he says “I love you”. It is embarrassing. But also, it is a severe worry. I hate that he is so open with total strangers. I keep telling him not to speak to anyone. But he ignores this advice. And now to say I love you, it is a real concern. It is one thing when I am with him. But what if for some reason I am not – like being on a school trip or something. It only takes him to be unsupervised for a second. It is such a worry. I hate to think that he will start talking to the wrong sort of person. These people hang around children’s playgrounds. I never take the boys to a playground on my own. Because I can’t watch them both at the same time. And they always split up. I have not taken them to a playground all summer hols. Last time I did that Daniel left the playground and went on ‘an adventure’. It was terrifying. I thought I had lost him. What do you do? I have bought a MedicAlert bracelet. But he refuses to wear it. I know if he is taken by an inappropriate adult this will be worthless, but if he wanders then it could be a life saver. Daniel has been to Smile Club this summer. This is the club run by the local special needs school. He has enjoyed his time there. He goes 10-12. He can’t do 10-4 until he is 8. He is 7 in a couple of weeks’ time. He has enjoyed spending time with the staff there, some of whom are teaching assistants and so he knows them already. At least this is a bit of ‘Daniel’ time where I know he is safe. And it gives a bit of quality time for Matty and I. Which is precious.
Maybe I should try Social Stories to teach Daniel not to talk to strangers. It may work. I know Matty understands the whole stranger danger concept. But Daniel is a whole another ball game. Sometimes I hate Autism. It puts my baby in danger.


Jul. 13.

Do Away With the Medication!

Daniel is progressing in every area! I wrote my last post telling you that he is toilet trained. Well things have moved along from there even. I was bathing the two boys on Friday night. Daniel, completely unprompted, suddenly announced he thought he needed a poo. He had not been medicated. Daniel never does a poo without being medicated due to his paralysed gut. I always have to medicate him to get him to have a motion the next day. So I quickly plucked Daniel out of the bath and sat him on the toilet. I was convinced nothing would happen. But he sat there. And he pushed a little. And then he did a poo. A perfectly normal formed poo!! All by himself!! No meds. No help. No encouragement needed. He was so pleased with himself. I was absolutely thrilled. This is huge news. For anybody that knows Daniel you will appreciate that this really is newsworthy. Daniel has been on very strong meds now for a few years, and he is only six! He is due a check up appointment with the Constipation Nurse Specialist in August. She will be absolutely thrilled to hear this news. Last time I saw her he wasn’t even sitting on the toilet with his pants up. Let alone using the toilet for the function it is intended for. She won’t recognise us when we show up. I shall be able to tell her that Daniel uses the toilet just like any other six year old now. He wears pants all day without accidents. And although I put him in Huggies DryNites at night, he nearly always is dry in the morning too. So I think we shall be doing away with DryNites very soon. That will work wonders for Daniel’s confidence and self esteem and dignity, and it will save us many pennies too! Because the local PCT no longer fund nappies for incontinent children with special needs.

Whilst we on the subject of achievements. I went for Daniel’s Parent Consultation at school the other day too. He is doing amazingly well. His reading and writing skills are excellent for his age. His pen control has much improved. He is doing brilliantly at maths. He is having less meltdowns in class and is coping better with change and with transitions. Altogether Daniel is doing brilliantly and we are very proud parents. The school obviously should take a large amount of credit for this as they are fantastic. I have met Daniel’s new teacher for September. She seems very pleasant. She is very young and newly qualified so I hope she has lots of fresh and exciting ideas. We shall see.

Only one more full week at school till Summer Hols. Let us see what the next few days will bring.

Sally xx