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One knock after another

Dec 08, 2017 - 0 comments

Well 4 years ago my son was diagnosed with autism and pica and a rare chromosone duplication of the 3q29, 3 years ago I was diagnosed with fibromyalgia then I had a stroke and now I've been told that I have a positive result for lupus why so many things one after another I am so tired in constant pain forget lots of things if I want to remember something I have to write it down, I just want to know what's wrong with me.

genetic disorder

Sep 23, 2013 - 0 comments

well I don't think ill ever get the answers I want or need. I just wish I could get inside my autistic little boys head so I could work him out. I ask him something and he says something random back nothing relevant to what im asking but I still love him and will keep working hard to try to understand my little boy. I just hope that with all the hard work it pays of and he says a sentence in the right context for the right reason. not to much to ask.

Another day

Aug 21, 2013 - 0 comments

Life with keygan is very interesting I have just been told from genetic testing that keygan has a duplicated chromosome that is quite rare. Everything about keygan is a challenge even a walk to the park it's normally nice to let him let off some steam but it is tiring keep having to run after him everywhere. Then there is getting to the park having to walk along a busy road with noisy vehicles and and sometimes he just sits down in the middle of the road randomly and won't move I normally have his pushchair there or dad to remove him from the situation. So we limit the days we do go out as it is too much.

Living life

Jul 24, 2013 - 0 comments

Each Day is a new challenge keygan has minimal understanding but he is a fun loving character. He makes me laugh so much with his constant repeating of everything he hears word for word. Then the challenges step in when you are trying to ask something of him the not understanding what you are actually asking of him makes things so difficult as he gets worked up and that makes me upset. When he has me up every night at some point but can't tell me what is wrong could be thirsty could have tummy ache could of had a nightmare who knows I never do and it breaks my heart because all I want for him is the best.