tag:blogger.com,1999:blog-28102202933100698962024-03-19T09:23:53.960+00:00Life with Twins and Down SyndromeIldihttp://www.blogger.com/profile/06874243499455036109noreply@blogger.comBlogger32125tag:blogger.com,1999:blog-2810220293310069896.post-76137966233665932902010-07-01T12:31:00.000+01:002010-07-01T12:31:31.636+01:00Sarah-Jane and TechnologyI am often amazed at the ability SJ has to work all manner of technical equipment. Quite recently we house sat at my son and girlfriend's home, it was late when we arrived and I was very tired after a three hour journey, so I thought I would watch some television. SJ had gone upstairs for a shower, to save time in the morning, we were going to a First Holy Communion and had to be up Ildihttp://www.blogger.com/profile/06874243499455036109noreply@blogger.com0tag:blogger.com,1999:blog-2810220293310069896.post-65668441493560143132010-06-08T17:41:00.000+01:002010-06-08T17:41:44.931+01:00Sometimes life is just too hard....Since coming back from holiday it has been hard to get back in the swing of things. Post piled up that had to be opened, emails that hadn't been answered, catching up on Facebook. It all takes time to get going. I always feel that there is a sort of lethargy that afflicts me after I have been away, a sort of deflation.
I think SJ feels the same, as we have had more rows in one Ildihttp://www.blogger.com/profile/06874243499455036109noreply@blogger.com0tag:blogger.com,1999:blog-2810220293310069896.post-78068776186177738972010-05-31T09:58:00.000+01:002010-05-31T09:58:28.963+01:00What is available in HungaryWe have just come back from holidays in Hungary and I cannot help but wonder what would have happened if my Mother had not had the inclination to defect from Hungary with me in tow, but had stayed and all other aspects of my life had been the same.
Whenever we go abroad with SJ and Pippa, it has usually been the case that SJ would get the stares or the attention, which sometimes worked in Pippa'sIldihttp://www.blogger.com/profile/06874243499455036109noreply@blogger.com0tag:blogger.com,1999:blog-2810220293310069896.post-57994486651092369092010-05-31T09:11:00.000+01:002010-05-31T09:11:39.663+01:00Is there anything in the pot for us?After reading the manifesto's of the three main contenders trying to work out what their policies are on children with disabilities, how they are to support families with children with disabilities and how they will provide them with suitable work in the future, rather than being confined to either staying at home, going to college learning the same thing over and over, or existing on benefits Ildihttp://www.blogger.com/profile/06874243499455036109noreply@blogger.com0tag:blogger.com,1999:blog-2810220293310069896.post-18107918610052184312010-04-11T13:00:00.001+01:002010-04-11T13:04:47.152+01:00Underactive Thyroid in Down Syndrome (Hypothyroidism)Sherrie Hewson one of ITV's Loose Women confided in the Daily Mail about how devasted, terrified and completely exhausted she was and feared the worst after a history of heart problems in her family.
http://www.dailymail.co.uk/health/article-1263304/Loose-Womens-Sherrie-Hewson-living-underactive-thyroid-gland.html
After taking a blood test she was diagnosed with Hypothyroidism, a Ildihttp://www.blogger.com/profile/06874243499455036109noreply@blogger.com0tag:blogger.com,1999:blog-2810220293310069896.post-46201129248585130922010-04-05T10:32:00.000+01:002010-04-05T10:32:24.709+01:00Reading before speakingWhen SJ and Pippa were born I read anything and everything I could to try and get the best information I could with regard to which way to go to give SJ every opportunity in life. Some of those associations like the Twins and Multiple Births Association, which has a Special Needs section. I joined this group when the twins were very small and used to go to regular monthly Ildihttp://www.blogger.com/profile/06874243499455036109noreply@blogger.com0tag:blogger.com,1999:blog-2810220293310069896.post-38252328850642335662010-03-22T09:37:00.000+00:002010-03-22T09:37:36.156+00:00LettersSJ was thrilled to be in the April edition of the Prima magazine, which featured some very positive letters that had been sent in by some lovely readers.
It was a good weekend for her, again! Her photo and her scores for the trampoline competition where in the North Devon Journal and I am thrilled to say that even though it was a new routine that she learned, her marks had increased Ildihttp://www.blogger.com/profile/06874243499455036109noreply@blogger.com2tag:blogger.com,1999:blog-2810220293310069896.post-25730699921651763102010-03-19T12:24:00.000+00:002010-03-19T12:24:08.646+00:00Read all about it!www.thisisnorthdevon.co.uk/sport/Bideford-bounce-pile/article-1919456-detail/article.html
The above is a link to the article in our local newspaper about SJ rise to fame!Ildihttp://www.blogger.com/profile/06874243499455036109noreply@blogger.com0tag:blogger.com,1999:blog-2810220293310069896.post-67678958426039089072010-03-14T12:29:00.000+00:002010-03-14T12:29:07.708+00:00Mother's DayMy mother lives in Australia so for her today is not Mother's Day as it is normally celebrated on the second Sunday of the month, the same as in Hungary, I think, which is where we are all from. I rang her anyway, for my benefit, because she won't remember the phone call after a few minutes anyway, she has Alzheimer's.
When she went to Australia in the early seventies on a ten poundIldihttp://www.blogger.com/profile/06874243499455036109noreply@blogger.com0tag:blogger.com,1999:blog-2810220293310069896.post-51846014263406633992010-03-13T14:22:00.000+00:002010-03-13T14:22:57.091+00:00Acts of kindnessThis isn't about the twins but about how it is important always to look on the positive side of life.
Last week on our way to the all important trampoline competition I found myself in that unenviable position of, after filling the car with petrol, not having the means to pay for it. I thought I had cash in my purse, but, as we had been out for a meal the night before I had used all the Ildihttp://www.blogger.com/profile/06874243499455036109noreply@blogger.com1tag:blogger.com,1999:blog-2810220293310069896.post-34847927478564246842010-03-10T09:43:00.000+00:002010-03-10T09:43:32.381+00:00SJ comes first again.....Yes she did it again!
SJ has won another first in the trampoline competition and it is clear that she is gaining confidence each time she enters. I am very proud and happy that it brings her so much pleasure as well as making new friends. One of the hardest things is the social side as I have said before. However, my advise is to join clubs, any clubs, not necessarily Ildihttp://www.blogger.com/profile/06874243499455036109noreply@blogger.com2tag:blogger.com,1999:blog-2810220293310069896.post-37197303207266359912010-02-22T16:56:00.000+00:002010-02-22T16:56:39.120+00:00Spread the word....as long it is negative....Not long ago I was at the pub with SJ having a good time when a lady came up and started to talk to me about her own daughter, who also had Down syndrome, and about some additional disease that she contracted the her immune system could not fight and it resulted in her daughter dying prematurely in her twenties.
I was upset but tried to ignore what the lady had said because I know it was with theIldihttp://www.blogger.com/profile/06874243499455036109noreply@blogger.com2tag:blogger.com,1999:blog-2810220293310069896.post-56130816545453019662010-02-10T20:55:00.000+00:002010-02-10T20:55:39.613+00:00Just one of those days.....Today has been, unequivicably one of those days. It started when I woke up and my index finger was still badly swollen and I had to quickly take off my ring. It started yesterday. I was walking from the car park to the train station, no more than three minutes, when I arrived my index finger was really painful when I looked at it, it had swollen and was purple and hot! I Ildihttp://www.blogger.com/profile/06874243499455036109noreply@blogger.com0tag:blogger.com,1999:blog-2810220293310069896.post-3227211580201051932010-01-19T19:06:00.001+00:002010-01-19T19:21:18.609+00:00Making the most of the day....On Saturday we planned to do as much as we possibly could cram into one day. After all the snow and then the ice and slush. SJ was unable to attend her usual leisure activity in Exeter put on by ROC (Robert Owen Communities) www.roc.org which are based in Cornwall. SJ attends sessions here on a weekly basis, activities include, swimming, volley ball, basket ball, football and Ildihttp://www.blogger.com/profile/06874243499455036109noreply@blogger.com1tag:blogger.com,1999:blog-2810220293310069896.post-61689137002007470982010-01-10T18:03:00.000+00:002010-01-10T18:03:54.454+00:00Getting out and aboutI know I am jumping about a bit but that is what life is like....thoughts come into your head and you feel you need to get them on paper.
Before the twins had started school or nursery come to that we had the time when they attended Tumble Tots. Not sure if you have all heard of Tumble Tots but there are a number of similar activities around now. Tumble Tots was the first. I Ildihttp://www.blogger.com/profile/06874243499455036109noreply@blogger.com0tag:blogger.com,1999:blog-2810220293310069896.post-61693253443661972142010-01-05T17:24:00.000+00:002010-01-05T17:24:44.850+00:00New Year ResolutionsHands up who has made some resolutions. No! Why not? I try to use them as an incentive to do things that I should have done anyway but then have to do or else I feel I am letting myself down. For example one year I made a resolution that I would read a book a month no matter what. And I did. Another year I made myself go to the theatre once a month. I didIldihttp://www.blogger.com/profile/06874243499455036109noreply@blogger.com0tag:blogger.com,1999:blog-2810220293310069896.post-23769801145814603982010-01-05T16:43:00.000+00:002010-01-05T16:43:52.511+00:00Christmas and New YearWe as a family love this time of year. I have enjoyed this year as much, if not more than, most other years. Due to my unemployed status I have had to be more careful as to what presents I have sent and to who. So I decided to make presents. Earlier in the year I made jams, then, through the kindness of those who have given me free apples, I made apple jelly, apple chutneyIldihttp://www.blogger.com/profile/06874243499455036109noreply@blogger.com0tag:blogger.com,1999:blog-2810220293310069896.post-21231727870339438382009-12-08T20:12:00.000+00:002009-12-08T20:12:04.090+00:00I am upset....All of my children have upset me at various times. I too will definitely have upset them on numerous occasions, especially as I get older and they get more frustrated with my lack of memory, patience and general tiredness of having to cope with life in general. Yes, I know I am a positive person, I know I fight the fight, but sometimes I dream of being lazy, boring, unenthusiastic, Ildihttp://www.blogger.com/profile/06874243499455036109noreply@blogger.com0tag:blogger.com,1999:blog-2810220293310069896.post-92153964326669503042009-12-06T13:39:00.000+00:002009-12-06T13:39:48.225+00:00Friday NightsWe have a routine on Friday Nights, SJ and me. Firstly there is the trampoline lesson to go too. SJ started trampoline lessons when we lived in Staffordshire and she soon got the hang of them. There were moments of worry when some warm up exercises involved forward roles, because of the weakness of the neck bones connected to the spine it is always a worry when SJ does anything Ildihttp://www.blogger.com/profile/06874243499455036109noreply@blogger.com1tag:blogger.com,1999:blog-2810220293310069896.post-17487669085549672102009-11-30T19:42:00.000+00:002009-11-30T19:42:12.514+00:00Starting NurseryThe twins had been allocated a place at the renowned and highly recommended Castle Nursery. The Headmistress there was an experienced and long serving educationalist and I was very lucky to have got the girls in. However it was not without persuasion on our part, as there was still the dark cloud hanging over us as to whether we would a) get the funding for additional support for SJ Ildihttp://www.blogger.com/profile/06874243499455036109noreply@blogger.com0tag:blogger.com,1999:blog-2810220293310069896.post-40079152112494233002009-11-27T11:12:00.000+00:002009-11-27T11:12:57.490+00:00When is flirting not really flirting......I used to enjoy flirting, I thought I knew what I was doing. I have even been told, by girlfriends that I was good at it. I liked fluttering my eyelashes, yes I did. Giving the cheeky sideways glance. Being a bit too touchy feely. Since I have been single it would appear that any contact with a male, that is even the odd hello or smile is construed as flirting. Ildihttp://www.blogger.com/profile/06874243499455036109noreply@blogger.com0tag:blogger.com,1999:blog-2810220293310069896.post-15497206416807546812009-11-27T09:45:00.000+00:002009-11-27T09:45:06.805+00:00Walking Talking Living DollsFrom August 1991 reality set in and I was on my own. Mum had gone back to Oz and this was the first time that I was to be on my own for any length of time. Amazingly Mum had only had one week off the whole time she had been staying with us. In that week, which was in July, we had had lovely hot weather and a very hot wind, I managed to burn Sarah-Jane's head! I know, I Ildihttp://www.blogger.com/profile/06874243499455036109noreply@blogger.com0tag:blogger.com,1999:blog-2810220293310069896.post-56314656775364422632009-11-24T12:09:00.000+00:002009-11-24T12:09:08.794+00:00Forget the job, just give us a chance.....part twoLets get back to finding SJ a job or at very least training for a job.
Firstly, let me point out that Pippa is officially unemployed, yes, after two years training as a hairdresser and passing her qualifications, plus taking on an additional qualification for male hairdressing, the company that employed her decided to make her redundant. They could not afford to keep both Ildihttp://www.blogger.com/profile/06874243499455036109noreply@blogger.com0tag:blogger.com,1999:blog-2810220293310069896.post-85028971855159137902009-11-19T09:10:00.001+00:002009-11-23T19:38:41.952+00:00Normal service to be resumed as soon as possible......I am so sorry. This is obviously not tomorrow, we went away for the weekend to celebrate my eldest son's birthday, then came back late on Tuesday evening, so was pretty tired after a three hour drive.
Then yesterday had a brilliant day at the Eden Project where we watched a truly inspirational band called Heavy Load, (www.heavyload.org). Please have a look on the Ildihttp://www.blogger.com/profile/06874243499455036109noreply@blogger.com0tag:blogger.com,1999:blog-2810220293310069896.post-50542164297586535062009-11-13T16:14:00.000+00:002009-11-13T16:14:32.388+00:00Forget the job, just give us a chance......Those of you who know me well enough will know that I am like a dog with a bone when it comes to injustice and fair play. But Lord - give me more patience - does there ever come a point when I will not have to fight to get fair play for SJ. It has taken me two days to calm down and write this blog, because if I had written it in haste and with frustration it might not have sounded Ildihttp://www.blogger.com/profile/06874243499455036109noreply@blogger.com0