#1
Posts: 6 | Threads: 1
Joined: Sep 2011
Reputation: 0

  • Registered
hi all! i am just new to this so please bare with me!

I have 3 Children aged 12 (girl) 10(boy) 8(boy)
M 8 year old son was diagnosed with tourettes syndrome when he was 6 after years of going back and fourth to different medical organisations..
we have a had a tough few years with regards to my sons behaviour,mainly major anger problems lashing out and being excluded from school over 20 times!!
we have been to gp, nuerologist, calms, ed psyc who all passed us from pillar to post which was really stressful and frustrating.
Eventually after many a year we are involved with a great psychiatric team whom on thursday of this week diagnosed my son with asd in addition to his tourettes.
I have really been struggling with his second diagnosis as for me it came almost out of the blue! We had spoke to his psychiatrist 3 weeks ago and this was the first mention of asd so when we returned on thursday and he gave an official diagnosis of asd i went into SHOCK!
i think i was expecting months of tests etc.
We also have a 10 year old whom we think has adhd so we are going through the relevant fields trying to get help for him.
I suppose my question is to you all is how do you cope with your Children disabilities? I am in melt down just now,the wind has been blown from my sails and i am an emotional wreck even though i wont allow myself to cry;-(
hayley x
#2
Posts: 27 | Threads: 2
Joined: Sep 2011
Reputation: 0

  • Established member
It took me 2 years to get a diagnosis for my daughter whilst going through all the hospital appointments she was eventually disagnosed with cerebral palsy, at first i didn't have a clue what to do!

Now i try to live each day by what gets thrown at us, we all have good days and we all have bad days, try to find something every day that makes you smile, a new skill he has learnt, something that he has done/said that makes you smile, remember to look for the small things in life and not the milestones the general population look for

Most of all remember to smile when you can, find a friend with a good listening ear that you can moan if needed and build yourself a support network, i am new to this site but i think its a fantastic idea and in a sense its like having a virtual support network to hand.
#3
Posts: 217 | Threads: 47
Joined: Mar 2010
Reputation: 0

  • VIP
Hi Hayley. First of all I think you need that cry!! Seriously, when you're by yourself - just get it out of your system - ask yourself all those 'why me' 'why us' questions then you 'll suddenly realise there are some children with far worse conditions. Somehow and from somewhere you'll find strength you never knew you had! Don't bottle up your emotions - you're allowed to have them you know.

You'll smile for your children and in front of all the health professionals that you see. Be firm and strong - there's so much help out there for you - even though you'll feel lonely at times and not know where to go/who to ask.

My little boy has ASD and hypertonia. We got his official diagnosis in January this year though suspected something was wrong when he was about 18 months old - the diagnosis still hurt though.

We've had SOOOO many appointments and even though we get sick of them we have to remind ourselves that people are trying to help. I've done a lot of research/reading too. One dramatic change we've made is Jack's diet. He's now gluten and casein free and is so much more alert, calm and happy. I thought it was going into the 'too much trouble' pile but it's the best thing we've done to help him so far.

Please don't despair. This site is great for sharing your troubles and triumphs. Like every parent on here, your strength will come from wanting the best for your children. You'll get through it because that's just what we do!! Big hug!! xx
#4
Posts: 54 | Threads: 2
Joined: Feb 2011
Reputation: 0

  • Member
Hi and hugs Smile

I hope you are feeling a little better today Smile

I think the crying will come at some point whether you let it or not, when my youngest was diagnosed with autism in January. Not at all emotional after all it was expected but weeks later after a trivial incident with him, it all came flowing out.

You need to remember that the diagnosis doesnt change your child, it just explains things.....how you feel is natural and it will get better.

I cope just by getting through each day sometimes hour by hour, sometimes minute by minute....sometimes easily.... I often feel that life is unfair, I already had a disabled daughter and it wasnt easy and then I had my little Luke and life got harder....

I have 3 children all together and some days are extremely hard but some days are ok, and we laugh and smile and love each other....

You will get through this Smile
Proud mum of 3...... Dani,13, amazing child....Sofie,11, my smiler, physically disabled, 3 strokes aged 2, speech issues, learning difficulties, epilepsy.... and Luke,2, diagnosed with autism January 2011, non-verbal cheeky chappy.
#5
Posts: 6 | Threads: 1
Joined: Sep 2011
Reputation: 0

  • Registered
Awwww thanks guys!
Can't believe how tough things have been since Thursday !
On the advice of Morgans psychiatrist and against the advice of my husband, I am going to walk into the social services dept this morning and see if they can offer any assistance.
I am trying to adopt the 'one day at a time' motto, but right now I think it should be one minute at a time.
I have a doctors app today with my other son whom we know has ADHD but need to go through the whole process of having him diagnosed. I don't know if I have the strength to go through the year of waiting to be seen then scrutinised!
Hayley x


Users browsing this thread: 2 Guest(s)