Times are quite difficult possible asd/spd??

[hulahoop09]

Hiya

Hope everyone is okay. I just need to vent really as feeling quite stressed atm and a bit emotional. Whatever happens we will deal with it but I feel like we have a very long road ahead. We have a 4 (5 in October) year old girl and a 2 (3 in November) year old boy.

From early on my lb had development delay. My lg didn't crawl till 11 months and walked at 16 months. My lb crawled at 11 months but didn't walk until approx. 3 weeks before his 2nd birthday. He was under physio who said he had hypermobility at the time. He has now been walking for 8 months and is still quite unsteady and still goes up the stairs on all fours (we have to carry him down), and he goes backwards down things like the back door step. He is also quite delayed in his speech. Some things he says aren't too bad but he repeats a lot of words and becomes obsessed with saying things over and over.

I know a lot can be developmental etc but I am pretty convinced he has something going on along the lines of autism and/or spd. Things are progressing and I sometimes feel helpless in how support him or deal with some situations.

- From age of approx. 18 months he started sitting and spinning the wheels on his cars. He would sit for ages and do it. This continued and he now has to have a car to hand at all times, in bed, in his pushchair etc. He also upturns his scramblebug and will spin the wheels on it.

- He has a thing about textures - he likes fluffy things and will crouch down and put his face on my slippers. He also likes clothing and blankets with holes in and will poke at them.

- He only likes a certain quilt cover on his bed. If I change it for a different one he refuses to put the quilt on him. He pushes it away and says "whats going on". He does the same with other blankets. He will sleep with no blanket on him if he has to. He became attached to a white cellular blanket approx. 3 months ago and now takes it everywhere.

- He uses smell as a way to determine if he likes something. He will smell new foods I introduce to decide if he will or wont eat it. He does the same with blankets etc. If I wash his cellular blanket he will sniff it as if to check its his blanket. I brought some garden chalk recently and the first thing he did was smell it. Also he mainly does a poo in his nappy when put to bed of an evening. he then puts his hand down his nappy and gets the poo out to smell it.

- On holiday recently we realised how much he cant deal with being somewhere overly busy like the dining area etc. he either had a meltdown or became withdrawn. He ate better if we sat in a quiet part of the dining room closer to a wall and/or by us leaving him in his pushchair

- He will stare at people for long periods or he will not make eye contact at all and covers his face.

- He flaps his hands a lot when excited or sometimes frustrated.

- He isn't overly affected by loud noise. For example when his dad mows the grass he will stand at the back door laughing and flapping his hands.

- He has meltdowns quite often. Even if we try to console him with what he wants, the meltdown continues as though he cant stop. Sometimes if we put one of a few of his favourite songs on it helps to calm him down

- He likes to be cuddled on his terms and can be quite lovable - otherwise he tends to fight you off

- He can be quite heavy handed and in your face. He doesn't know his own strength. he has recently started when playing will use his face/mouth to headbutt you in the tummy etc. As a crawling baby he would get into some sort of a zone and crawl and anything in his way he would throw behind him with force. He would then turn around and go back the other way throwing again.

- Sometimes when watching tv he will stand on all fours and watch it upside down through his legs

- He will watch the same film over and over again. he is like a sponge when it comes to knowing word for word or certain actions. Although his speech seems delayed. He sometimes when saying words will say the same word or phrase a few times in a row. He knows the PG bit at the start of films (parental guidance is advised) and some adverts he knows off by heart (the websites etc).

xx

 

[smurff]

Hi, I know exactly how you feel and most of what u wrote I could have wrote myself.
My dd has just turned 4, she was delayed also. She crawled at 12 months and walked just b4 she was 2yrs old. She is quite good at walking but can trip over alot and she won't walk unless holding someone's hand. She can walk upstairs as long as she's holding the rail and she can come down them but she has to be holding my hand.
Even a tiny step up or down she has to hold onto something. She doesn't run and has just learnt to kick a ball. Doesn't know how to use a knife and fork and will occasionally use a spoon.
If there is a dvd she likes she will watch it over and over again.
She isn't potty trained and has limited speech. She doesn't really talk in sentences but can say words but she is improving. She likes linning up toys in a very neat line.
She knows her own mind, if she doesn't want to do something she will shout no and refuse to do it.
If she's playing with something there's no way I could get her away from it. If she wants something but I say no she'll drop to the floor and curl in the feotal position so I have to carry her. She didn't have good eye contact, didn't know how to play, loved spinning on the spot and would often seem in a world of her own. She presses things to her mouth and cheek as a way of exploring new things. She likes to have a toy in her hand at all times

I knew from very early on something wasn't right with my dd. It's probably not want you want to hear but when I was at the stage your at I just wanted someone to be honest. It is a very very long road and we're only just seeing light at the end of the tunnel.
I spent 3yrs bring told I was parionoid and dd was OK just developing a bit slower. Me and my husband moved countys and I got a new hv who finally listened to me. Within 1hour of meeting her she knew there was something not quite right and she was booked in for hearing tests, speech therapy, and a appointment for a peaditrition. Austium was mentioned but they considered her to young to be tested but we were told she had global development delay and learning difficulties.
She started nursery September last year and got on great but it was clear just how far behind she was, she also started a child development clinic 2 days a week. After 1 wk I was pulled to 1 side and told it was more than likely she was autistic and even though at that time she was 3 they put her mental age at 18 mths. Also we were told she would not cope in a normal school environment.
We then had to begin the process of getting government funding so she could get help at school, as this funding has just been cut its very difficult to get, we had alot of hoops to jump through and a long 3 month wait to see if we could get it. We finally got the funding then we had to try and get her her specialist school which after another long wait we got.
It has taken 4yrs to get where we are and at times its seemed more like 10 yrs. We know next year she'll get tested for autism but it really makes no difference to us.
As you say you just deal with it. I think once you know what your dealing with its so much easier.
I for one wouldn't change a thing about my dd, all what I mentioned is the bad points but believe me she has millions of good points. She loves hugs and kisses, she us always laughing and smiling, she is so caring and loving.
If you think something isn't right you just have to keep on and on still someone listens. As I said yes it's a long road but you'll get there and it will be worth it in the end. Good luck xxxx

 

[hulahoop09]

Thank you!!

Some sounds like my lb. He doesn't use a fork or spoon and he cant actually jump, he does try though bless him. Im prepared for a hard road. My nephew is just being diagnosed with autistic traits and SPD and he is 11 years old!! The HV is coming to see us next Wednesday morning. xx

 

[smurff]

Hopefully you get a hv that listens to you. That's all it took for us to get the ball rolling for my daughter. She was also late with her pincer grip.
I know I mentioned autism but it's not a definite my dd has it, we've been told by lots of professionals that they think she is but there's still a chance she is just delayed and in years to come she could catch up.
If your lb sounds the sane that maybe the case for him to its just impossible to tell.
The one thing I've learnt on this journey is autism is a massive spectrum, I have a friend who's boy has never said a word, sleeps about 3hrs a day but sometimes can go 2 days without sleep. I know someone else who's son will only eat chips but is in a mainstream school, passed his gcse with flying colours and is off to university, but he's classed as autistic cause he only eats chips. I spoke to another lady on hear when I was really upset and worried about my daughter, she said she mentioned me to her husband later that day, the husband turned around and told he was told he was autistic. She had been married to him for 15yrs and never knew.
What I'm saying is when I heard the word autism my world collapsed, I thought we'd be traveling a long road forever and I be so upset thinking about her future.
Now after everything I have no worries at all. She's happy she's settled and compared to what other patents have to deal with I know I'm very lucky.
I'm very proud to be my daughters mummy and if someone said they could wave a magic wand and make her like every other 4 yr old I can honestly say I wouldn't want that. I wouldn't have her any other way. It may be a long road but it's a very rewarding Road. Good luck let us know how you get on and if I can be any help I'm quite often on this site x

 

[Reid]

Hi there
Alot of what your son dose mine dose to my sons 5 and was diagnosed last year with autism.
Firstly have you taking your concerns to your health visitor or dr? Early intervention can make a massive difference in getting you're son the support he may require. It made a massive difference in my sons development we got him a place in a specialist nursery for autistic kids best thing I ever done for him.
Meltdowns are very difficult as there isn't alot you can do to help I've learnt that it's best for my son to give him space and not talk to him when he starts to calm he will come for a cuddle then.
The thing with your son headbutting your tummy my wee boy dose this it's not out of anger it's the sensory input he gets from it he's very much a sensory seeker he loves jumping running and all that sort of thing if you read the following it will give you a better understanding of it its part of the 7 senses
Proprioception

Proprioception is the sense of the relative position of neighbouring parts of the body and strength of effort being employed in movement. This sense is very important as it lets us know exactly where our body parts are, how we are positioned in space and to plan our movements. Examples of our proprioception in practice include being able to clap our hands together with our eyes closed, write with a pencil and apply with correct pressure, and navigate through a narrow space.
Individuals with autism can sometimes struggle with Proprioception and is why they like the feedback from the headbutting or deep pressure massage
If my sons upset or if he's hurt himself he likes my hand to push on his head not hard or a tight hug the deep pressure calms him.
Lol sorry I've rambled on a bit lol
The most important thing is if you feel there may be something there make sure you get the health visitors to refer him onto a pedestrian who can get the ball rolling to rule it in or out xx

 

[hulahoop09]

Thanks so much for your reply! The hv is coming to visit us Wednesday morning and hopefully will be referring him to a paediatrician and the early years development team.

 

[hulahoop09]

The hv visited yesterday and is referring my lb to a paediatrician, early years development team, OT & physio. I am glad he will get support but a bit nervous also. He can do things like jump, climbs stairs on all fours, has to be carried down the stairs, has sensory issues among other things and I do feel bad somwtimes that I can always communicate with him properly. 😔

 

[Reid]

Early intervention is the best thing you can do so your on the right path now. All the professionals I've came into contact with have been fantastic and a great help waiting lists can be a bit of a nightmare
Look into pecs cards these were great at helping my wee boy with his communication another great approach is the hannan more than words you can find some videos on you tube about this xx

 

[hulahoop09]

Went to see paediatrician friday. She was a big help and took lots of info and said he has speech and language delay, fine motor and gross motor delay, sensory issues she also thinks dyspraxia but he has to have other assessments before she can diagnose that and also he has autistic traits (wheel spinning etc) again that diagnosis will come later in the year. She has referred him for different things and he has had to have bloods taken to check a few usuals but also his muscle enzymes. She said his joints are VERY loose/bendy, physio last year said he had hypermobility. He will also need a hearing test. She saod the next appointments for ot and SALT etc wont come till end sept time. We already have physio appointment for august. It is what we suspected, a long road ahead? Lol.

 

[Reid]

If you're in the UK (were Scotland) have a look to see if there's a carers centre near you they are a fantastic resource. They run parents support groups and courses on different things I done some of the autism 1s and leared a lot about why my son dose certain things. They also will keep you up to date with any events going on in your area will help you if you need advice as well there really great xx

 

[hulahoop09]

We are in Wolverhampton. Thank you I will have a look see if anything nearby. xx