First step to freedom

I felt much better since my last blog. It took me a few days to get over that heavy feeling. I would like to thank everyone who wrote to me showing their concern and boosting my morale.

Let's see .... Alex definitely matured over the last week and I am so proud of him.

Last Friday, I took Alex with me to a Mummy's Group in Bracknell. We meet every Friday morning for two hours to discuss everything and anything .... sharing information on schools, treatment, etc. We all have special need children from genetic disorders to autism and down syndrome. Although our children have different difficulties, we all share one thing in common .... we want the best for our children. Having a support group gives us strength when we are weak, give us voice when we can't speak and give us courage when we are afraid. At some point, someone has gone through what you are going through ... everyone is not afraid to share and everyone benefits.

Anyway, the group provide a baby-sitting service while mummy chats and Alex was so good, he just went with the lady. He looked at me and then said "Bye bye Mummy" and didn't look back. An hour later, he came back with a drawing and was so pleased with himself. I am so proud of him as I was so afraid that he might not go. Looks like I worry too much :-)

On Tuesday morning, I had to attend *Dialogue Group* meeting.  Jeremy had to work and I arranged for my cousin June to watch Alex while I go for this meeting. It was really a hectic morning for me as I had to take him to June's at Maidenhead and then drive back to Bracknell for the meeting and then back again to Maidenhead to take Alex to Rainbow in Bracknell. It was all worth it as the meeting was a very good one and I also learn that my son is happy with June. 

Yippee ..... freedom at last (LOL) at least, if I need to go somewhere, June can watch him and she doesn't mind at all as she adores him. She offered many times in the past to babysit him but both Jem and I thought Alex wasn't ready. 

For some reasons, we made ourselves prisoners ... always thinking that Alex will not co-operate. We didn't give him the chance to and I must say it's mostly Jem's fault. He is the most amazing father and the most protective one too. I am glad that he is what he is but sometimes it could be a bit ..... trapped.

We also received a letter from Rainbow that Alex's Review meeting is in March and a representative from the LEA (Local Education Authority) will attend this meeting too. I hope everything will go well and I will update everyone of the outcome.

*Dialogue Group*

Every member of Dialogue Group has a special need child and we meet every two months with the local authorities to discuss our concerns and how to improve services in the Borough. Bracknell is considered one of the best authorities in the country providing the best service to special need children. This is because, the Authorities listen when we speak and we all want the best for our children without being unreasonable.

Running out of steam

It's one of those days that it's a struggle to remain positive and happy and shiny.

I have always been one to pick myself and the people around me up. I can't see the reason to remain low and unhappy when it doesn't really do anything to improve matters.

It takes a whole lot of energy and stamina to remain cheerful and looking at things in a positive way. The gloomy weather doesn't help and of course its one of those days in the month as well.

I had a call from Meadow Vale Primary to confirm our visit to their facilities on Tuesday, February 3rd. I spoke to Linda, the SALT who visited Alex at Rainbow to assess him. I asked for her honest opinion what she thinks of Alex and if there is a possibility that Alex would one day be coming back to mainstream education. I know it's hard for her to answer my question but I really need hope to keep me going.

She too feels that Alex is held back by his speech and not his autism as he was really happy and co-operative when working with her. She cannot see him going to mainstream school even with support from Language unit at this moment in time. All special need pupil attending mainstream must be able to cope without support for at least 40% of their time in school. Alex will not be able to cope.

Would Alex be able to come back to their facility if his speech improved after going to Meath .... say in the next two years? She hesitated for a moment and then said "Yes, perhaps and it depends if we have the place for him. We are full at the moment and it's too soon to tell". I can appreciate that but I am at my lowest ebb today, I need hope to bring me up.

It's hard to admit this but I am not all that strong. A friend asked me sometime ago, how do I remain strong and positive all the time? I told her, I cannot and it's not easy but moping won't help. 

Right, I better follow my own advise now and get on with my life. STOP feeling down and put your son to bed. Read him a book, give him a hug and take a nice shower and play some wordtwist. Tomorrow will be better.

Wishing for a Crystal Ball

Sometimes, I wish I have a Crystal Ball. I could look into it and see what my son would be like when he grows up. Can he talk? Will he lead a normal life? Have a family that adored him .... when we are no longer there?

I am not saying I want to fast forward time ... I love growing with my son and watch him blossom but I just cannot see beyond his difficulties at the moment. Just like the time when he wasn't potty trained. I worry that he may still be in nappy when he goes to school .... or when he refused to feed himself or when ............

A mother's worry mind will never rest. If we don't worry, are we fit to call ourselves mothers?

We went to Meath School again on Tuesday. We brought Alex and Mrs Dunn with us this time. Mrs Dunn is the closest to Alex among his teachers - since Day One at Rainbow. She asked questions that no other teachers would ask and you know she genuinely care and love our son.

At one point of our conversation, I said that Alex's receptive language is only mildly delayed and he understand everything we said. The Deputy Head, Ian said "I don't believe he understand everything you said" and to demonstrate that he does, Jeremy asked Alex to get him a tissue. The box was in front of the deputy head, Alex took one and looked at Ian to seek permission. When he got a nod from Ian, Alex smiled and gave the tissue to his Dad.

Ian then said that's very good but Jeremy pointed at the box, therefore Alex is just following his signal. I then asked Alex to get me a red cushion. I made sure I didn't point and Alex scan round the room and saw one by him, he took the cushion and walked to me. Ian was really impressed and Alex was very proud of himself.

To be honest, I don't really know what is best for my son. If he start his life at a special school, where will he go for secondary school? There isn't one near us which means he will have to go to a boarding school. I cannot bear that thought.

After touring the school again for Mrs Dunn's benefit, we went back to the discussion room. Mrs Dunn asked if they can see Alex in this school as every child will have to go through an assessment from Meath. Ian said he can but Alex still need to go through the assessment. Then, the crucial question came from Mrs Dunn, where will Alex go after Meath?

All of a sudden, I was awaken and Ian said that he may go to a language unit attached to a mainstream school. He thinks Alex's disability is on the milder end and his speech is holding him back.

I was really grateful to Mrs Dunn for asking the question as I wasn't brave enough to ask him myself. I was worried that he will tell me he cannot be sure as it was too early to tell. From one professional to another, he had to be honest to her. It was music to my ear and I went home feeling happier.

On Thursday, Becca rang us and spoke to Jem. She invited her colleague from the language unit from Meadow Vale Primary, a school near us, (No one told us about this school as everyone felt that the school cannot offer what Alex needed) to give a second opinion that Bracknell cannot offer the language support that Alex needed. Everyone agreed that Meath is the right place for Alex. Officially, they are not allowed to make recommendations but they all have Alex's best interest at heart. We are so grateful to everyone for helping us in this difficult period.

Becca also believe that Alex is held back by his speech and not his autism. She thinks that he is a very intelligent boy and hope Meath is the solution.

We know we are very lucky and I will never forget what everyone did for us.

Doing the right thing

Alex came home with another great report from Rainbow.

The report read: Alex has had a good afternoon. He listened to the story well. Alex chose to play in the new home corner. He painted. A good start to the new term.

Such an encouraging report and we have faith that things will get better. I believe going away from his comfort zone and a little bit of sunshine helped our son to grow and mature. 

                               ********************************************

I went out for a movie with my girlfriend Jane, tonight. Something happened ...... I don't know how to explain this but I saw a different side of myself and discovered that Jane and I are quite similar.

Jane and I agreed to meet at the Oracles at 5:30pm and we both arrived earlier. I rang her and she was in Boots while I was just getting out of the car. We decided to meet at Debenhams. I had to cross a bridge to meet her and I saw a homeless man sitting by the bench shivering. It was -2 degree Celsius and I could see this man struggling to keep warm even with a coat on. For what reason he sat there I do not know but I had to get away from the cold. I could not stop thinking of him and I felt a certain sadness in me. 

We had to cross the bridge again to go over the other side for dinner and cinema. I saw the man again and stopped. I told Jane I had to give him some money to get a coffee or something to keep warm. I could only find two pounds in the dark and gave it to him. Jane started digging as well and the man said don't worry as he doesn't want money. Jane gave him a couple of pounds as well as she couldn't find much in her purse. The man gave us a nod thanking us and I believe that if he had a choice, he wouldn't be sitting in the cold. He doesn't look like a typical homeless man .... he was well kempt but I guess there is a story behind this. I guess he could be one affected by this dreadful economy or he is down on his luck. 

Anyway, we went for dinner and where we sat, Jane could see this man. He sat there for awhile and a man walked over to him and they talked for a few minutes. Jane could not sit still as she used to be a social worker and knew what its like to be homeless. We discussed if we should get this man some food as the money we gave him isn't enough to get a cup of coffee in this area. I knew she is not going to rest until she get this man some food. 

When we got out of the restaurant, he was still sitting on the bench. Jane and I went the other way to get to McDonalds to get this man some food and tea. When we got the food and walked over to the bridge, the man left.

Both Jane and I were disappointed but we hope the best for this man. Perhaps, he was invited to a shelter and keep warm for the night? From the way he was dressed, this is a new thing for him. His duffel bag looked clean and his Jacket as well. Perhaps ..... he just lost his job and his home ..... I do not know but I pray that this man will be OK.

Baaack to school

Seemed like a long time ago I last updated my blog. It's this darn weather you know.

We had the coldest weeks in 30 years and some places went as cold as -10 degree Celsius. We had our heating on all day and boy .... will we flip when the bill comes.

I can count the number of times I went out the front door since we got back ..... in one hand!

Alex is back to school today and he settled right in. His report read: Alex has had a settled afternoon. He has been more vocal, attempting a wider range of sounds. The focus letter is J. Alex ate some jelly. The focus story is Jack and the Beanstalk.

When he got back from school, Alex went to his corner and 'stim' for 5 minutes before he was ready to hug and cuddle - that was his 'me' time. School must have stimulated his rested mind, so much that he needed to do that. He begged to go to bed at six-ish but I refused to let him and delayed till seven (this is unheard of) because .... I know he will wake at five!

Alex's latest craze ..... Shaun the Sheep. He laughed like a mad man when he watch that DVD. He was first introduced to Shaun at Auntie Wendy's when we last visited her before our holidays. And when we were on the plane, Shaun was on one of the channels and again, he laughed like a mad man. When we got back and visited his grandparents, someone gave 'Pops' a Shaun DVD for Christmas and they naturally switch that on for Alex. Again, Alex laughed so hard that delighted his grandparents. They let him keep the DVD.

For the second time in two days, Alex wanted to watch Shaun .... again.

Baaaaaaaaaaa Bob the Builder to the baaaaaaack shelf!

Where are my fingers?

2009 ...... I have a feeling that this is going to be a good year. 

It's the 2nd of January today and I have 2 things to celebrate. Firstly, Alex's sleeping pattern changed since our return and he now sleeps from 8:00pm to 7:00am. Secondly, Alex wants to talk more and even played pretend.

Just this morning, or should I say half and hour ago (I am so excited that I want to share with you), Alex came to my bed and we had a cuddly moment while Daddy slept next to us. I taught Alex to count with his fingers by folding and unfolding them. It then turned into a game.

He folded all his fingers and said "Oh Oh" and I said, "Where are your fingers?" He said, "Nana Ouse". I then said, "We better ring Nana and ask for your fingers back?" 

Alex said "Allo ... Nana? Can ar aff ma mm mm back? Bye bye Nana" and he unfolded his fingers and said "Ahhhhhhh" in surprise. I acted surprised and the game went on with calling Pops (his grandad) for his fingers back and then Dada, Mama, Cher Cher, Ber Er and Uncle Bill.

It was just too cute to not write about it. I am immensely proud of my son and I just want to share my joy.