Parents with children who have autism

[smurff]

Thanks happycupcake and Jessicasmum, think i was having a down day, At the time i was told about him being referred there were another 3 parents being referred also. The head nursary teacher was so nice when i filled out the referal forms because she knows i suffer with anxiety and we have been through speech and language with my daughter. She explained that he's in the bracket of a 2-3yr old and although my son is only 2 he's closer to 3 so that's why he's classed as slightly behind. Funnily enough he hasn't stopped talking all day!. I think they have to help him on his confidence and get him to interact a bit more. He can do it, ive seen pics of him in nursary sat in a circle taking in turns with his friends stiring flour in a mixing bowl. My dad went in and did a talk at his nursary a while ago and all the time my son sat at the back in the corner and wouldn't talk or look at his grandad yet last week when my dad came round home to put a cabinet together he said hello grandad grandad build cabinet i help build cabinet with grandad. Hopefully once he gets his confidence everything will fall into place.

Jessicasmum, good luck for the 28th, hope it all goes ok, keep us updated

 

[jessicasmum]

Glad you are feeling better about things now Smurf, your son sounds like he's doing great really and I'm sure he'll soon catch that little bit up soon enough. I think sometimes they can be a bit over the top with making parents worry about their children not meeting their age range, it's only a guideline really what they say they need to be doing.

Had an hard time with my little girl last couple of days with her having bad meltdowns and it so hard because she can't tell us.
I wondered how you ladies deal with the meltdowns with your children when they were none verbal?

Thank you Smurf, yes I will update you guys after we have the appointment, it really can't come quick enough this appointment.

 

[smurff]

It's so hard dealing with meltdowns, my daughters aren't so regular now but when she has one we know about it. A few weeks back my daughter got out the car to walk into school, it's only a 5 min walk, she likes to hold things and that day she had a magazine, unfortunately she dropped the magazine and it landed near dogs mess so there was no way I could give it to her, to say she had a meltdown us an understatement, she dropped to the pavement and wouldn't stand, she started hitting her head on the stone wall, she screamed hysterically and no matter how much I tried I could not mover her. I had about 5 bags hanging off me and my son hold aswell, luckily enough he's seen it before and he just keep telling her it was OK and not to cry. All the parents at school kept looking at me but no one offered to help, I couldn't care less about them looking at me but they were staring at my daughter and I kept thinking she's not a bloody side show she can't help it!, after about 20 mins I managed to get her into school, she just kept sitting on the pavement all the way to school. I got her into school and 1 of the helpers is always waiting at reception to collect her and take her to class, normally my daughter goes up to her takes her hand and off she goes but I just couldn't calm her, I'm in tears as I hate seeing her like that, I'm surpossed to help her and protect her and I couldn't do anything for her. the helper went to get help and her teacher came up with a magazine for her and that was it, my daughter smiled took the teachers hand waved goodbye and off she went. I'm left in reception a blubbering mess.
Last week we had another epic meltdown but luckily enough it was at home, she wanted something she couldn't have and once again dropped to the floor hitting her head on the table leg screaming and crying, my mums panicking cause she's never seen her have a meltdown, I'm trying to lift my daughter off the floor but it's getting harder as she's nearly 5 now, plus when she's likes that she doesn't know what she's doing and she can quite easily give u a black eye or cracked nose, all I could do is drag her out the kitchen cause she was going to hurt herself. Got her in the front room and threw a blanket over both of us and held her tight till she calmed down, just rocking her and wispering in her ear. She always goes under a blanket if she needs time out as it just blocks everything out for her.

I can normally tell if a meltdown is coming, as soon as I see one coming I try to distract her straight away. She loves Mr tumble so I put that on straight away and I let her choose which one she wants, or I take her in another room and find something for her to play with, she loves my phone so I just put that infront of her and let her watch some cartoons for a while.
I was always told, the best thing to do is get them somewhere where they can't hurt themselves and leave them to work their way through it, not helpful I know and obviously horrible to see but once they have had the meltdown and are OK again they probably don't even remember what it was about in the first place.

 

[happycupcake]

Both our two like rough play at times, they find it hilarious. However our daughter will randomly hit our son though, which she finds funny but he isn't amused.
Our youngest son is almost five, his birthday is this month. He hasn't been diagnosed as higher or lower functioning, only as having an ASD. They put it under this these days, rather than Asperger's and stuff. At this moment in time I wouldn't say he's particularly high functioning but I also wouldn't say he's at the more severe end of the scale, I think because they are so young there's time for things to change so perhaps after he's had help things will be clearer.
We also have an appointment this month the day before your speech & language appointment, I hope it goes well for you

Meltdowns are hard. Both of ours have them daily, our daughter will simply scream and cry, she may bite herself or hit others as well. A cuddle usually calms her down but it takes a while.
Our son will launch himself to the floor, kick, scream, shout (which becomes slightly embarrassing when he shouts "GET OFF ME" because I'm paranoid people will assume I'm abducting him or something!), I have had to carry him outstretched screaming his head off on plenty of occasions. Sometimes I will sit with him, be it at home or in the middle of a shop, until he calms down. Sometimes I have to leave him alone, sometimes a cuddle will do the trick, sometimes a distraction like my phone will instantly snap him out of it and this is the case with our daughter as well. They love watching their favourite CBeebies show on YouTube and they also love Talking Tom. Oh and touch is something with our son - he loves having his back or soles of his feet stroked, and sometimes this will calm him down. We also have a dog who helps too.
I don't know if you have heard of autism dogs? The waiting list is monumental but it's worth looking into as they can do wonders for autistic children and adults, many a time autistic children can find it easier to bond to animals than people. We don't have an autism dog, we researched into various breeds and chose the breed we felt suited us best and have been training her. We hope to at some point train her to do specific things to help bring them out of meltdowns.

I can't stand people staring. We have had people give us filthy looks on so many occasions and I do tend to be fairly vocal about this. I usually do say something to those who do this, along the lines of it isn't their fault, they are autistic, or haven't you seen an autistic child have a meltdown before? Or, if you don't like it, **** off, which I shouldn't say but sometimes I have become so angry with these ignorant people. This has happened literally once or twice, I do try to contain my rage at them. It is incredibly frustrating though, knowing it is purely ignorance and if they were to listen to you, they may be slightly more understanding

 

[smurff]

Happycupcake how do you deal with it when your daughter hits your son?, My daughter also hits her brother, she chases him with toys and hits him on the head. Luckily enough I'm always in the same room as them as we have an open plan living area so i can generally stop her doing it straight away but the more i tell her off the more she finds it hysterically funny.

And I'm with u and the staring part, drives me insane when people look. I didn't say anything outside my daughter's school cause i worry bout kids saying stuff about my daughter in school just because of what i say but in the street I'm terrible for shouting at people who stare, a few times my daughter has been getting upset and people have stared and turned to look as they walk past so if I'm with my husband i tell him to look after our daughter and I'll run down the street to the idiot that stared and ask excuse me but what the f**k do u think u were staring at does it not enter that tiny brain of yours that something's wrong and the last thing she needs is you staring at her!. I find some older people worse , if i hear a old person say oh in my day we wouldn't put up with that I'll go mad, I've heard a few say there's no such thing as autism just bad parenting!!!!!, Luckily enough no one's ever said that to me cause honestly i don't know what I'd do if they did.
I understand that people are going to look if they hear or see a child screaming and having a meltdown but normally you'd understand something was wrong and stop looking straight away, it's the people who tut and keep looking that makes my blood boil!

We also looked at an autism dog but like you say the waiting list at the mo was 3yrs and they had closed the list. They recommended getting a dog that could be trained to become an autism dog, we decided on a golden retriever and we were top of a waiting list for a puppy , the lady we were getting them from has actually had some of her puppies go on to become autism dogs and guide dogs. As my hubby works away alot and I'm on my own with the kids we decided to wait a few years till hubby was home more perminatly till we got one but i. Starting to regret taking our name off the list!. Has it help having a dog in your family ? I think the fact that id have to take the dog out and toilet train it and plus we could never be spontaneous and just go away for a few days that ask put me off. When my daughter has been around dogs she shys away but in her own time she will go up to a dog and smooth it down. I still am so unsure of what to do when it comes to a dog for her, I'm not sure how it will help

 

[jessicasmum]

We've not had anyone look at us yet over our little ones melt downs but we haven't been out much in public places yet and With her only being still only a toddler I think people will still just think just normal toddler temper tantrums but I'm expecting these times will come soon and I don't know how I would act towards them, depends probably my mood and amount of patients I feel I have at the time but I know I would be screaming inside no matter what.

I think at the moment because our little girl is still quite young and not been given any diagnosis yet that others are just going to talk round her issues, like for example my family: mum, dad and sisters have seen her at my parents and like straight away because she's crying because she doesnt feel comfortable there most of the time are like saying "oh she must be tired" things like that. I think I was myself making excuses in the past but now I'm not. I think it will so much easier especially with my family once she gets a diagnosis so I will be explain to them proper.

I've taken a look at the autism dog and I think it seems such a great thing with the stories I've read but there is one big issue with our family having a dog as I have a massive dog phobia which has taken over my life to be honest and restricts me going to most places, so something I really need to sort out. If it's something that would make a massive difference to my little girls life then I'd do anything in my power to overcome this horrible phobia.

 

[smurff]

Doesn't have to be a dog, I've seen lots of programmes where it's a cat that helps the child, i think alot of animals have a sixth sense when it comes to people who need comfort and help, sometimes just the feel of an animal close by can help, smoothing down an animal can also be very calming

 

[jessicasmum]

We did have a cat and recently sent him to be rehomed because we were moving. My little girl didn't pay loads of attention to him and he seemed scared of her.
She has only been near a dog once that I've known about when she was at the park with my hubby and our eldest and my hubby said she was very excited when the dog was next to her, so not sure if this was a one off or she would be like that with other dogs.

 

[happycupcake]

Smurff, I do what you do, I stop her. She doesn't tend to find it funny when I stop her as much these days but will get annoyed with me instead. But I always tell her it isn't ok to hit. I don't know if she understand this. Play therapy has helped them to tolerate each other and share more and take turns better, although they do this more with the lady who visits than with us! They have improved though, on the whole.

I tell you what Facebook saw some pretty awful posts about autism a while back, I can't remember whose post it originally was, but there were so many ignorant people commenting saying things like "if it were my kid they wouldn't behave like that, it's the parent's fault" and "give the kid a beating, that will sort them out"... like you can beat the autism out of a child! I was so angry. I posted precisely what I thought and attempted to give them an education on autism, I'm sure it didn't do much good because some people are stupid plain and simple.

Puppies do take plenty of energy, you are right definitely! We had ours from 7 weeks old (they advise pups leave at 8 weeks but during this particular week for some reason puppies are more susceptible to developing lifelong phobias, so if anything should drastically change or frighten them in any way, it could mess things up for them, and you too, so getting them before this week or after is preferable), she was like a newborn at the time with how tiny and dependent she was. My goodness though the speed they grow is amazing! She's seven months old currently and is the size of an average lab. Plenty of room left to grow, so we expect a horse this time next year lol! She's a labradoodle, they were originally bred in Australia for assistance dogs specifically for those with allergies as they are hypoallergenic (after they have their adult coat, before this they do malt everywhere), they are highly intelligent, easily trained, excellent temperaments and good with children and smaller pets.
She has lived up to the reputation so far, although she is largely a bouncy puppy still! Overexcitable and wants to make friends with our cats, who naturally, are less than impressed with this.
We got her from a reputable breeder, visited first and met all the puppies, both parents and the grandmother too. The lady said she has had many go on to become assistance dogs in particular for those with autism so this was lovely to hear.
I think if you can spare the time to train them (toilet training is easier than you may think, it doesn't usually take long providing you take them outside from day 1 onwards), they don't usually take long to learn basic commands and you can take puppy classes too (they are about £30 here per six week course).
It all depends on the breed but labs, retrievers, labradoodle all have excellent reputations.
It has helped having her, yes. The only thing to watch out for I think is the nippy stage as obviously some children will freak out.
Our daughter is a little shy with animals but spending time with them eventually she warms to them.

Jessicasmum, my mum doesn't acknowledge autism in any way and it is frustrating to say the least, and somewhat offensive too. I don't know why she doesn't.
With the dog, this must be difficult for you. Have you thought about hypnotherapy? Smurff is right though, doesn't have to be a dog, any animal which your child loves can be equally as therapeutic, if this is your main goal

 

[jessicasmum]

Sorry I haven't posted for a while but was having a few problems of my own, I have mental health issues which is bipolar type 2 that and my phobias too, we have just moved and I've been having quite low moods and not much motivation recently but I'm feeling not too bad at the moment.

My little girl had her speech and language therapist assessment yesterday and she's going on a waiting list which she said is short to have sessions at playgroup and home. The assessment lady said that it is more than just a speech problem and I said yes and she said what was I thinking, i said autism and then she nodded her head, I felt like crying because it's just been me so far that has said this. She said that she can't diagnose and just to keep an open mind, she said most people don't like labels, but my view is I think giving a name to something is better because you can start to understand things more rather than a big list of individual things wrong, also I think easier to explain to others too.

Happycupcake: How did the your child/children's appointment go on Thursday?
Oh that must be so hard with your Mum, did she not go to appointments regarding your diagnoses then?

My husband went to see his mum yesterday and was trying to explain about the appointment but mother in law is terrible, she thinks she knows it all and you can't get a word in. I really think hubby needs to tell her it's looking like it is autism but I don't know if this would change anything. The way she is there is no way I'd let my little girl be looked after by her.
I said to hubby that what does he think now that someone else has sort of agreed with me over it being autism and he said I think I was just in denial.

 

[smurff]

Hi jessicasmum glad your feeling better, i to have some mental health issues, i have horrible ocd and anxiety problems, just waiting to see doc to finally get some help.

I can totally relate to how you must have felt when assesment lady thought the same as you. I'd known in my head my daughter was autistic for a few years, nobody thought the same as me and kept saying she'll catch up but i knew i was right.
When i was pulled into the office of my daughter's special teacher at the child development clinic i asked her did she think autism, when she said yes i swear you could have knocked me down with a feather , i burst into tears and just crumbled, even now remembering that moment is still upsetting, i could'nt understand why i was so shocked as I'd known it all along but to have it said out loud by someone else just made it all real.
I agree with you, I've had lots of people telling me that they don't like labeling children at a young age but i don't see it as a label at all, i find it a big help giving what my daughter has a title. In certain circumstances i do have to explain about my daughter, I'm so tired of saying oh she has development delay, sensory issues, autistic features, speech delay . Now i can say this is my daughter and she has autism, it's alot better for my daughter as she can get alot more help.
I am very lucky in the fact that i have an amazing family who help and support my daughter and can totally understand her needs, they know if they can go to her to say hello or when to just stand back and let her come to them, the same with my husbands family aswell.
Has your husband not mentioned autism to his mum at all?,. It must be very hard not having family behind you because you do need that extra support. To be honest if it was me I'd explain about your previous fears of autism and that you have possibly had it confirmed by your assessment lady, if she didn't accept it then that's her problem.

 

[happycupcake]

Jessica's mum, I'm sorry you have been having a hard time of it. I somewhat understand since I have MH problems too. It isn't always as easy as get out of bed, be motivated! Sometimes it doesn't happen. I understand this and it's rubbish when it's like this.

Have you settled into your new home yet? I hope so.

I'm pleased your daughter's appointment went ok, I guess it was a relief that someone understood and listened? It was for me.

We had to rearrange the appointment for him since he was suffering with his constipation and there wasn't any way I was dragging him there in pain.
My mum didn't attend any of my appointments, my husband came with me. She didn't attend or get involved with the children regarding this as well. She doesn't accept it. I don't know why. We haven't spoken since February, she won't acknowledge me.

To both of you, have you thought about trying acupuncture for any MH issues? I use it for anxiety and it is amazing, by far the most helpful treatment I have tried

 

[smurff]

Hi happycupcake, I never thought about acupuncture for anxiety, I didn't know that could help, to be honest I'm willing to try anything. It's got to a point where I have had to give up driving because I am convinced everytime I pass someone on the pavement that I've run them over!, sometimes I can drive round the block 6/7 times until in my mind I know I didn't knock anyone over. it's so stupid I know but it's the horrible thoughts, I'm so over protective on my children, I can't look at numbers or water I wash my hands 20 times an hour, believe me the list goes on and on.

I can't understand why family members have trouble accepting things, children with autism are so special and it's amazing how they see the world. I find it so hard to understand how family members and just turn thier backs because they can't accept things. It's really sad because they have no idea about the special times they are missing

 

[happycupcake]

Yes acupuncture can be an absolute godsend, I rate it highly. It can take a few sessions to help but some respond quicker than others - I felt a huge difference after my first session and didn't have to take meds from that day. It's expensive but it's worth it. Unless you are lucky and have a GP who practices it, or is willing to refer you instead of having to have private sessions.

I don't understand, some people are weird. Autism doesn't make you a weirdo or someone to be ashamed of, it simply means your brain does things differently and you see and communicate with the world differently. Different doesn't equal shame or anything like it, but some people don't see that. They see it as an effort, a disability which will be impossible, or something that makes you stupid or lesser in some way. Sod them, they can keep their ignorance

 

[smurff]

Couldn't have said it better myself happycupcake, at the end of the day they are the ones missing out, they see the world in such a special way, sometimes I think its us at a disadvantage not autistic children.

 

[happycupcake]

I love that our little girl is incredibly clever, her speech is incredibly delayed but she's a problem solver. So, she may sound as if she speaks some alien language, but she is intelligent. Her only issue is being able to talk clearly, which must be frustrating for her

 

[smurff]

Ah your little girl sounds amazing, and your right it must be so frustrating for them to not be able to say what they need. I think my daughters speech is around an 18mth old stage (she's nearly 5) and although she can say lots of things it's mostly just thing means her dad can understand and the majority of the time she does talk in her own language but we're so good at picking out words that we can genuinely understand what she wants, only yesterday she was a bit upset and tired and kept asking for something and for the first time I couldn't understand what she wanted and it was so upsetting cause she was looking at me and trying very so hard to try to say her words.
She is a problem solver as well, if she is doing something or trying to fix something you cannot get her away from it till she's solved it. She loves jigsaws, she has a box which Contains 3 jigsaws and they are all mixed in together, she sorts out all the pieces first just by looking at them them compleat's them all in about 5 minutes

 

[happycupcake]

Our daughters sound quite similar, I would put our daughter's speech at about 18 months too. She can say many words but struggles putting sentences together and telling us what she wants. I think we inadvertently make this harder because we intuitively know what she wants or what the issue is and can sort it, many a time. Sometimes we haven't a clue though and it is rubbish when this happens.
She's more for taking jigsaws apart lol she likes tidying them away

 

[happycupcake]

We had the appointment for our youngest daughter today with the paediatrician. They diagnosed her today with an ASD. This hasn't come as a surprise

 

[jessicasmum]

Sorry yet again not posting for ages, just how my moods can make it hard to be able to post sometimes, I'm not being rude if anyone sees me on here and I just don't post, just how I get at times.

My daughter had her first paediatrician appointment on Thursday and she said she also thinks it's autism and she will be assessed for it now and she normally says 6 months to find out but should be before that. She's being assigned to a specialist health visitor now. She said to apply like we were going to for the nursery within the school that we need to apply for in January next year for her to start in September 2018 but I asked and she said she might have to go to a special needs school.
Yet again I already knew she had autism but it's hitting me hard, having a lot of crying moments recently.
Hubby told his mum and she was actually ok about it but I'm not sure she knows much about ASD.

Happycupcake: Sorry I realised I didn't answer from one of your previous posts about hypnotherapy over my dog phobia, I've looked into it but never tried it, obviously not something they will give you on the nhs. I've had quite a lot of CBT but that wasn't really for me.
I've never heard of acupuncture for anxiety either, something to keep in mind. How often have you had it done?
How do you feel now it's been confirmed about your daughter having ASD? Myself I feel bad for being upset about it because she's still my little girl and I'll love her no matter what.

Smurff: Sorry you also suffer quite bad with anxiety etc Have you had much different therapys to help?

Do either of you recommend any good sensory toys/equipment thats really helped your children? My daughter at the moment spends most of the time upstairs with hubby while I'm with the baby downstairs, she feels calmer up there bouncing about on matteress and I'm thinking we can't live like this and wanted to see if reorganising downstairs and getting some sensory things that would make it more calmer for her to be downstairs also, we have a middle room downstairs that we could turn into a bit of a play/sensory room.