• Replies 1 reply
  • Subscribers 67 subscribers
  • Views 536 views
  • Users 0 members are here
Options
Related
Hints and tips
  • To quote someone's message, first select/highlight the relevant text, and then use the Quote button that appears
  • To "mention" someone, type @ followed by the start of the forum name, and choose from the list; that person will get a notification of being mentioned

Advise needed for a mum waiting for a diagnosis

Laura

Good Afternoon All. 

I have a daughter who is 5 - soon to be 6. I did a self referral to CAMHS back in August last year, We have spoken with them on the phone and they have told me there is a 18 month waiting list- and longer due to COVID. 

Over the last few years we have noticed a change in her behaviors- i would say the change started when she was around 3 years old. She would fixate on something and repeat herself until someone who answer her in a way she would understand. She would collect toys and items before bed and line them up and if the wasnt how they was in the morning she would get upset and put them where they was the night before. She would also put items underneath her pillow. She would line up all my shampoo bottles along the side of the bath in colour order. These fixations would last a few weeks and then it would be another fixation. Currently its bible reading. 

My little girl would also only want to go a certain way to and from school everyday- she would get upset if it wasnt the same routine. 

As the years and months pass , there would be new fixations lasting weeks and then change again. 

Over the pass year since Covid and being home- going shopping for essential seems to now upset her. She know says she wants to go home or she would have small melt downs in the shop. Her behavior seems to get worse when we are out in public or at home. When she is in school she is a different child and also when she around family members such as her grand parents.

My little girl now has sleep issues- this is a new thing (3 months or so) and also when she is tired the behavior is heightened. same for when she has sugar- her behavior is heightened. We have limited how much sugar she has and back in a routine of sleep again but nothing seems to be working 

When i last spoke to CAMHS to find out an update they asked me how i was doing- I mentioned all the above and the lady who took my call told me that in girls- they are good at hiding then boys. Girls don't act out as much compared to boys. Girls tend to bottle up anxiety and behaviors around people or places who arent comfort zones and when she is finally home its like an explosion.- which to me makes sense to how my little girl is. 

I just need some advise on what to do before a diagnosis because im struggling here. I work from home and my husband works from 7-4 and only see's me at the end of the day exhausted. 

Some days we have really good days and other days is horrendous. 

My in laws i feel make it worse as they dont believe anything i say and i just get from them we'll take her from you for a week to give you a break.. i dont need a break i just need support. I say she isnt allowed sugar and when my little girl ask them for a chocolate bar ect the response is you need to ask mummy. This i feel makes me look like the bad guy. 

Everything is always better at the inlaws- how do i get around this also? 

If anyone out there has had a similar experience or can offer me some advise before we get a diagnosis then i would be utterly grateful

Many thanks ! x

Parents

  • Hi Laura, didn't want to read and run from your post. I am new to this too, my son will be 13 tomorrow and despite our suspicions of him being on the spectrum for a number of years the school are only just helping us and pushing it through to getting a diagnosis. I totally understand what you mean about an explosion when she gets home. My son is exactly the same, at school and Grandparents house he is perfectly behaved (except the odd occasion) but as soon as he gets home it is like a release and we are on the receiving end of any tensions he may need to vent.

    Working from home and home schooling is very definitely challenging, my son really struggles to sit still and concentrate, even throughout online lessons he is sometimes still moving around and talking to us.

    Is there someone she can stay with whilst you go shopping? Can you go at quieter times so that she may not be so overwhelmed by all the people? Some supermarkets have quiet hours specifically designed for this purpose where they dim the lights and play calming music, is this an option?

    In relation to everything being better at In-Laws, not much you can do about that, except speak to them and explain everything over and over again if necessary. Maybe print out some resources or ask them to read some websites about the condition to help them understand. Does your partner help at all with your daughter, can he talk to them?

    Are your employers understanding of your situation, can you make up any time you spend trying to home school. I know my employers are happy for us to work in the evening if we miss time during the day due to childcare pressures. 

    My advise if take one day at a time, try to see the positives for each day rather than the negatives (easier said than done I know) and always remember you are doing a fantastic job.

Reply

  • Hi Laura, didn't want to read and run from your post. I am new to this too, my son will be 13 tomorrow and despite our suspicions of him being on the spectrum for a number of years the school are only just helping us and pushing it through to getting a diagnosis. I totally understand what you mean about an explosion when she gets home. My son is exactly the same, at school and Grandparents house he is perfectly behaved (except the odd occasion) but as soon as he gets home it is like a release and we are on the receiving end of any tensions he may need to vent.

    Working from home and home schooling is very definitely challenging, my son really struggles to sit still and concentrate, even throughout online lessons he is sometimes still moving around and talking to us.

    Is there someone she can stay with whilst you go shopping? Can you go at quieter times so that she may not be so overwhelmed by all the people? Some supermarkets have quiet hours specifically designed for this purpose where they dim the lights and play calming music, is this an option?

    In relation to everything being better at In-Laws, not much you can do about that, except speak to them and explain everything over and over again if necessary. Maybe print out some resources or ask them to read some websites about the condition to help them understand. Does your partner help at all with your daughter, can he talk to them?

    Are your employers understanding of your situation, can you make up any time you spend trying to home school. I know my employers are happy for us to work in the evening if we miss time during the day due to childcare pressures. 

    My advise if take one day at a time, try to see the positives for each day rather than the negatives (easier said than done I know) and always remember you are doing a fantastic job.

Children
No Data