Daniel has Finally Started to Take an Interest in the Garden!

Well this has been a rough week as far as sleep is concerned!! I think some of the issues do stem from the fact that poor Daniel’s bedroom has at times been 30 degrees!! Which is ridiculous. But that is with the window wide open and a fan on. There is nothing more we can do to bring the temperature down. So I have resorted to the boys going to bed in just a thin T-shirt and a nappy these last few nights. It does seem to have done the trick. I have also reverted to using the Melatonin for Daniel. He has just been going to bed almost ‘wired’ recently. He goes up there, has his milk, then is laughing and talking and banging his head so hard on the bed that it feels as though the ceiling is going to come down above you. It is so distressing. It makes you feel impotent as a parent, I feel that surely he can’t really be enjoying banging his head so hard, but I feel powerless to change his habits. So I broke out the Melatonin again after probably about 10 months of not using it, just out of sheer desperation. I am not proud of this fact, but feel it is the best for him and for the rest of the family. Daniel’s awful screaming and head banging for hours on end (it has literally been hours) has been disturbing his little brother’s sleep, as well as ours obviously. One night he head banged and screamed from bedtime till gone 3am. Then he got up with what looked like two black eyes because he was totally exhausted. I hate being unable to help my child at times. As a parent that is a really distressing prediament. But I hope that he will feel better soon after a few good nights….

But all our other news as a little family unit is good news. We picked the hottest weekend so far to decide to do a load of hard labour in the back garden! My husband re-felted the summerhouse roof and I gave it a nice coat of Sadolin all the way round. It now looks beautiful. As good as new. Very attractive and makes you want to go out in the garden and sit in it. All the while we were doing this hard work we had the conservatory door wide open. And little Daniel kept peeping out to see what we were doing. Then he climed out cautiously, then climbed back in again. This carried on for a while. Then he got really brave and came right out and crawled up the garden to see us!! Our garden is very uneven and has horrid decking and a large pond – so totally hazardous. We are having quotes at the moment to have it landscaped, smoothed out and made all grass for the boys to play on safely. Seeing Daniel come out in the garden really warmed our hearts. He never would normally venture outside. I smothered him in factor 50 sun lotion for babies. And put his hat on. He was very curious and explored on his own terms in his own time. (During all this little Matthew was having his afternoon nap!). But seeing Daniel faltering outside just brought it home to us how weak he is, how poor his balance is, and how unsteady he is generally on his feet. He fell and stumbled a lot. He crawled a lot to save falling. And he crawled with his feet in the air and on the backs of his wrists. At the end of the afternoon his backs of his wrists were red where he had been crawling. Yet the hospital say that he is normal in movement and doesn’t need physio??!! It is totally ridiculous. Our poor baby is very weak and wobbly. But it was great to see him out!! We got the water table out and he was playing with his cars and a boat in the water and he loved it. He was just happy amusing himself out in the garden with his mummy and daddy whilst we were working and trying to make the garden a nice place for all of us. We have a large umbrella, and now the summerhouse is nice again, so if we can just have nice even turf for the boys to play on we will be sorted. I just hope it is not too cost prohibitive. Pennies are not at all in abundance!!

I had to go to the Occupational Health dept of my NHS employer today to discuss my return to work. I have been off for a while now with the stress of Daniel’s condition making my Bi Polar Disorder much worse (it always used to be managed quite well with medication). I am planning to leave and hope The LIME Magazine supports me enough to stay at home and look after Daniel full time, but the cheerful Doc told me today that if I don’t return in two months’ time they will ‘get rid of me, and it won’t be easy getting any other employment in this current market’. So that was nice and positive!! Made me feel really great. I guess I kind of knew it anyway, but now I really have to throw my all into The LIME to make it work. Not only because I am passionate that it is a must-have resource for All parents/carers of children with special needs, but also because it needs to bring in enough pennies for me to scrape by at home with Daniel and little Matthew. I would just love to be able to look after my boys and work in the evenings.

I am going to a local Special School tomorrow to do a talk on how to be a successful businesswoman whilst staying at home looking after a child with special needs. My story is supposed to inspire and to help others survive financially at home whilst caring for their disabled child. I had been thinking of writing lots of notes etc to take with me. But now I think, no, I will just simply take myself along and talk. I have quite a lot to talk about. I have launched a charity which as we speak is hopefully getting registered with a property charity number (paperwork submitted), I am Managing Director of Digby & Sprout Ltd who supply sensory toys for children with special needs, I author this BLOG as a means of information for similar parents and a sort of support system for them when required, and I am now the Editor in Chief of The LIME Magazine for Parents/Carers of Children with Special Needs. So I think if I talk a little about each project, how Daniel inspired them all and how they came to fruition, then I should be fine. And hopefully a lot of it will be them asksing me questions, so I hope the hour will be up quite quickly and before I even realise it!! I am very nervous, but I think it will probably be very good for my self esteem.

Well now I have more envelopes to stuff. I have been taking issues of The LIME in envelopes down to my local Post Office in droves, and they are becoming my new best friends down there!! We chat and laugh whilst they individually stamp each of normally around 100 envelopes for me. They are great. But only a few to stuff this evening so that’s a relief. But if you haven’t bought your copy of the June Issue of The LIME yet you must go to http://www.limemag.co.uk soon or you will be disappointed at this rate!! And please tell all your friends/contacts. I really appreciate your support peeps.

Sally www.limemag.co.uk and www.digbyandsprout.co.uk and www.ict4autism.org