Feeling really down lately

[Lilypad]

It's like my mind is only focused on one thing, and that is getting answers for my son's problems. I am constantly searching the internet looking for answers but obviously the only people who can do that are the assessors. My life is seriously only revolving around autism. I don't want to read anything that isn't about autism, I don't want to see my friends because they talk about other things and I'm honestly not interested. I don't go anywhere, the only time I leave the house is to take/pick up the kids to/from school or for any appointments. I find it hard to keep the flat clean and tidy. I think this thing is taking over my life and i'm becoming depressed. I feel paranoid that people are looking at me when i'm out! Is this agorophobia?? Is this even normal?!

 

Also, my neighbour who lives in the flat below me is moving out because of the noise my son makes. He jumps up and down a lot. He also screams or throws things around if he is upset. I am dreading the next tenant moving in, because they might not be as understanding as the last one and I am worried about being evicted. How do I explain my son has problems? He hasn't even been diagnosed so I can't say "he is autistic" because he may not be.

[smiley1590]

you say to your neighbour that you looking into your son and you suspect lof his problem being down to autism sounds like problems are getting on top of you weighting you dragging you down and controlling your thoughts and life sounds like struggling to cope manage with everything going on pressure becoming too much overwhelming and suffocating have you been to the doctors?to discuss how this affecting you? sounds like anxiety /depression maybe in background behind situations!

 

XKLX

[justine1]

Hi

 

Not really sure what you can do about the neighbours thats tricky,unless you are able to move to a ground floor flat or house which may be more appropriate.Even if your son has a diagnoses its not always possible to use that as a reason for the noise, if its disturbing other peoples quality of life(sleep etc) then it will be very hard for them to understand.

 

With regards to you being consumed with reading up on autism,I was similar after my son's dx but I had three other kids to think of and was studying.I even thought of giving up everything I was working so hard for luckily I quickly shifted my thinking.

 

Best thing for me has been studying full time,I am busy all the time,a bit too busy really.I still have to research things for my son's needs but I think it will always be that way.I am battling to get him the right school place right now and need to have all the facts at hand so I prepared.

 

Maybe doing a course,doing voluntary work or part time job(if you not working) will take your focus off the autism.It gave me confidence and I definatley dont feel as depressed as I used to.

[Jade]

Hi, I have been feeling exactly the same way. My son is in year 1 and not diagnosed yet either, but i am in the process of trying to find out everything i can about what is going on for him. I went out with a couple of women friends this evening for the first time in about six months & it just made me feel more down because you can't help but talk about what you are going through and whats happening for your child, but at the same time feel the need to justify and make excuses for whats happening because its so hard for them to understand what its like to live with.

 

The paediatrician i saw last November said she didn't think he was on the spectrum, said he was anxious & had low self esteem & possibly dyslexia, but she has referred him on to the clinical psychology team. His absent father & his wife can't manage him either, & have the belief that he should take responsibility for his own actions, which borders on cruelty (of the psychological kind). school have got to the point of requesting Ed Psyche to observe him. His teacher told me this Friday that she will "fight tooth and nail" to get him one to one support because they can't manage him in the classroom (he spent most of the day hiding under a table & came out to kick the teacher & spend a couple of ours with the headmaster, doing writing on his laptop).

 

I haven't had any work for a few months now, but i think i would be more exhausted if i was working whilst trying to get through this long & difficult process...admiration to all that manage it.

 

I think a lot of the problem for me is feeling and being isolated, and assuming that people won't or don't understand. I spent the last year feeling paranoid in the playground waiting for my son at home time, but very recently i have started to make links with other parents who have challenging children, & have begun to realize I'm not the only one and not everyone is judging me.

Edited February 6, 2011 by Jade

[JeanneA]

Hi Jade & lilypad I do understand how you both feel as I am the same. I only have one person that I would say is my friend and I don't see her very often. I to am wrapped up with Glen and his problems even though he is away at present I haven't felt any different I know once he returns he will probably end up going back to the same school which isn't ideal. I haven't any interest either in other people, when I do see my friend which is only every few months, I struggle to listen to her talking about every day things, to be honest I'm always glad when I can home again.

With my husband being out of work I've felt more depressed than ever lately. It isn't easy when you have a child with special needs you do feel 'out of it'.

[Lilypad]

I have suffered in the past with anxiety and depression anyway so I probably do have it mildly. You sound the same as me JeanneA. I have one friend who I see at the weekend but I am starting to feel like that is too much. I prefer my own company and even though my sons can be hard work especially when they are fighting, the thing I like best is when we are all home together. It feels safe and I know they are ok. I am very protective of them, especially my youngest.

 

I worked before christmas, but I couldn't cope with it and I feel safer at home. I would work from home if I could but it's so hard to find anything like that. I will have to go on the dole soon too and look for work at the same time which I am dreading. Does anyone know if there is a way around it? They gave me a DLA form last time which I have only just filled in and I think I need to send a doctors report with it...

[Gayle]

Wow, for the first time in months I feel like I am not the only poor ###### struggling to keep it together. My daughter is 9 and is currently being assessed. I've been absent from work since October because the daily phonecalls from school and the demands to come and get her turned me into a gibbering wreck everytime my phone went off.

I know exactly how you are feeling about your downstairs neighbour. My neighbour moved in November because of the noise of Faith when she was upset. The flat is still empty but the nightmares I'm having about explaining the noise to the new tennants haunts me. I put my flat on the market last June and had 2 viewers. I was hoping to move somewhere a little more private. Faith became so upset at the prospect of change I've taken it off the market. As It stands I couldn't afford to move anyway.

It seems to be constant. I have no idea where I will ever get the energy to go back to work or stand up to a neighbour if they complain about Faith. What I do know, and is apparent from every parent on this Forum, is that we love our kids and will fight for them. We will ensure their lives are as

uncomplicated and supported as they need. We will find the strenght and determination and we will have times when it seems nothing is going right. However we will never be alone. This Forum will be here and there will always be someone who genuinely knows what your going through. Tonight I am comforted by this knowledge. Thank You X

[JeanneA]

Hi lilypad I've just sent you a P.M.

[JeanneA]

Hi Gayle, I had the same problems with the school constantly ringing me up, so I had to leave my cleaning jobs and go and collect my son from School. Now I have no cleaning jobs as it just isn't possible. Like you I to would be lost without this forum it has helped he hugely sometimes I don't know what I would have done without it.

[Lilypad]

Thanks for all the messages. It is such a relief to know I am not the only one feeling like this and this forum is a godsend!

 

Because my flat is rented, I know my landlord could evict me if any neighbours complain. That is what I am worried about the most. I am praying for the next tenant to be deaf!

[BuntyB]

Does your landlord just own your flat, or the other one too? Or even better, do you have a social landlord? Hopefully they know what the DDA is all about!

If I were you I would write to the landlord and explaint that is expected your child has autism and this is why he is noisy, despite your best efforts. That way your landlord can make the best decisions about yours and his potential tenants. He may offer you a more suitable tenancy, but nobody should evect someone because they have a disability. If you were blaring your music, yes, but then you can help that!

Is a flat the best place for him? or would somewhere with a secure garden where he could let off steam be better?

[cmuir]

Hi

 

I can completely understand and identify with what you're saying. Firstly, autism (and the possibility of it) can be all-consuming. I couldn't think about anything else pre my son's diagnosis. I got the to the point where I felt I couldn't function properly. It was at that stage, I had to learn to be much more assertive and let professionals know how this was affecting me and my ability to function (sadly, sometimes it takes a crisis to happen before anything changes or progresses by professionals). Like your neighbours, mine were horrendous. They were professional people (one was a teacher) who showed no compassion or understanding whatsoever - even after I spoke with them saying how difficult it must be for them, but my son has Aspergers and we were doing our best and hoped that they could bear with us and try and be tolerant, etc etc. I gave them some leaflets on Aspergers which are available from NAS. Fact is, unless autism directly affects people, some people are ignorant, some people aren't interested, and some are downright difficult. We actually ended up moving house and thankfully it's been the best thing that I could have done.

 

Although I can't offer any concrete advice, just wanted to let you know that the diagnostic process can be a long and emotionally taxing process. It can be all-consuming and I think that's something a lot of people on this forum can relate to. Persevere and hang in there.

 

Caroline.

[lisac]

Blimey not much fun is it. I can identify with everything you all say. I think we are in a constant state of worry .I dont have anything in common with normal people with normal families . I think id have more in common with an alien . Im dreading my neighbours on either side dying or moving . New neighbours next door but one just put up a 8 foot high ( at least) fence to block out my son jumping up and down in the garden yelling with his undegarments round his ankles, i dont blame them it just makes me feel very awkward when i see them in the street but what can you do !? You certainly arent alone .

[DameBeverage]

I as someone who is late diagnosed, I will always be grateful for my parents for my upbringing. It has been suggested that both my parents could have been on the spectrum, so I suppose my upbringing in my young life would have been perfect for me. As someone who last year supported a family with their severely autistic child. The love being so evident is what I have a long-lasting memory of. I feel so respectful and grateful towards the parents of children on the autistic spectrum. You all are saints from heaven. You give so much and show so much committment. I remember my young childhood as the most memorable and contented time and I can thank my parents for that.

 

It is OK to feel down and tired. You do so much, so I just wanted to say thank you for all your committment.

 

Sorry, I am feeling emotional, because as a mature adult I am going through hell, I suppose because my safety net is not there anymore and am remembering how great my childhood was. Keep your strength, as you are our teachers and guiders. You are our safety net, not the services. you are the ones that show the love that the child feels. Just by being there is enough.<'>

[sky]

i can so identify with the posts here [i too have a neighbour who has put up a fence-which is growing with my son!].my son is my world and sometimes get so down with the constant negatives that come from his school.you feel you are constantly fighting their corner.so glad it is half term as i can have a happy sweet boy again instead of an angst one.all his school sees is his problems and his autism without sereing the boy underneath and are creating an aggressive child where there wasnt one before. you feel sometimes like shouting out that here is a wonderful boy- why cant you see it instead of just seeine the difference from the norm?i am sure i am not the only one here who feels like this . feel very frustrated!

[Lilypad]

Since I first posted this topic, my son has been diagnosed with Autism. They say it is high functioning or Asperger's syndrome. I feel relieved to know exactly why he is the way he is but it still doesn't stop me feeling fed up sometimes.

I can have days where I am ready to take on anything that is thrown at me even if it is when my son is having a really bad day...like today for instance!

 

There is a shop at the bottom of our road and I wanted to just go to buy a drink and some chocolate but it took us almost half an hour to get there because he sat on the stairs for about 5 mins, refusing to move. Then he stood outside our house for about 10 minutes because he said his brother had told him to wait and wouldn't move until he came back (from my mum's house where he is staying tonight). I eventually managed to get him to cross the road but then he started to pick up stones and throw them, he thought this was hilarious even when I told him it was 'naughty'.

 

I always feel like I'm going to cry when he is difficult like this, but rather than cry I often end up laughing because I would probably not be able to stop crying if I started! My son hates anyone laughing and when he saw me laughing, he ended up walking back to our house so I had to run after him and pull him back!

 

This is WHY I dislike going anywhere with him these days because it does take a long time to get anywhere and I don't drive.

Does anyone else have the same problems with their child?

[sky]

Since I first posted this topic, my son has been diagnosed with Autism. They say it is high functioning or Asperger's syndrome. I feel relieved to know exactly why he is the way he is but it still doesn't stop me feeling fed up sometimes.

I can have days where I am ready to take on anything that is thrown at me even if it is when my son is having a really bad day...like today for instance!

 

There is a shop at the bottom of our road and I wanted to just go to buy a drink and some chocolate but it took us almost half an hour to get there because he sat on the stairs for about 5 mins, refusing to move. Then he stood outside our house for about 10 minutes because he said his brother had told him to wait and wouldn't move until he came back (from my mum's house where he is staying tonight). I eventually managed to get him to cross the road but then he started to pick up stones and throw them, he thought this was hilarious even when I told him it was 'naughty'.

 

I always feel like I'm going to cry when he is difficult like this, but rather than cry I often end up laughing because I would probably not be able to stop crying if I started! My son hates anyone laughing and when he saw me laughing, he ended up walking back to our house so I had to run after him and pull him back!

 

This is WHY I dislike going anywhere with him these days because it does take a long time to get anywhere and I don't drive.

Does anyone else have the same problems with their child?

[sky]

hi lilypad _ i sooo relate to what you said about the crying bit. i have said the same myself _ cant cry as i dont know when i would stop.i too have up and down days .going out is akin to russian roulette_ it can start off really well but am usually walking on eggshells in case he becomes overwhelmed by sensory overloadand we have a meltdown which is not good now he is 13 and taller than me!i also dont have a car so rely on public transport.most of the time if we keep to his usual route and routine he is happy but it can only be someone stopping me to talk that can set him off so we go everywhere as a duo . how many times i have come home and thought never again _ but you do _ you have to !

[lsw146]

Hi Lilypad, it can be exhausting can't it. I have spent over a decade reading everything on autism and aspergers and trying to convince 'specialist' that they need to be clear in a diagnosis for my daughter. Just when I stop reading we have another crisis and I am back trying to gather the evidence again. Just last week the doc said he knows more than us but we (and herself at 16) know her better.. I actually wondered if that was true and how recent his training or knowledge on aspergers and females was. I mentioned Simon Baron Cohen and he looked at me blankly!

What I try to do is set myself a time limit and then say right enough, switch off the copmuter, put the book down and do something else.

As for going out I can totally understand how frustrating and tiring it is because you just know know what you are going to get!

I hope you feel that the diagnosis was a positive thing for you and help your 'studies' into the subject be less overwhelming.

Just remember it's okay to be tired and upset and that it's okay to ask for help for yourself as well as your son

My daughter says I am her there for her but sometimes I need someone to be there for me.