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i really dont know what to do

(9 Posts)
januarynewstart16 Tue 17-May-16 07:30:17

Hiya this is my first ever post. This may be long winded so i do apologise. I have three children ages 14, 8 and 5. My 8 year old was a prem baby, he was born at 30 weeks, he was born with bleeds on his brain and had further bleeds once he was born. He had problems with his lungs and couldnt feed. We saw the doctor who was looking after him once he was born who told us we have to take it hour by hour. Anyway 4 weeks later we could take him home knowing that he may never walk or talk. He met most of his milestones with holding his head up weaning etc...we could never go to play and stay sessions or really go out anywhere because we would end up back at the hospital with breathing difficulties or bronchiolitis. It was like this till he was around 4. He started a lovely pre school with not many children. Trouble was he never spoke a word all the time he was there not to the staff or to children. They had concerns and we went to see a speech therapist a few times and she said he was just delayed. He went onto reception where again never spoke a word. (By the way he spoke to me and his dad and nan) school said he was a selective mute. I recorded him at home and his teacher was very surprised. Now in this time i noticed he wasnt interested in doing pictures or painting or making things out of cereal boxes like all the other children. I knew something wasnt right. He wasnt picking reading up or able to write his name or remember the alphabet which we was trying so hard with at home. So fast forward to year three. Me saying something is wrong since reception. He cant remember things, cant do phonics which has hindered his reading. Cant write very well. This is really affecting him he is a lovely boy and so caring. His so so frustrated and hard to see him struggling. He cant sleep well. His so hyper. When we go out his like a ping pong ball just bouncing. Now has come the anger with frustration which is pretty scary from the laid back boy he was a year ago. Teacher has finally said yes there is something going on where his had an assesment and it says he has significant memory problems and to go down the medical route ive been to the gp and said it sounds like he has adhd so will refer him to the community ped. He has an iep form which we have had for 2 years now im just waiting and waiting and nothing's happening. What can i do? I feel like im not able to get or provide the care i need for my little boy. Also there is autism on both my side and oh's. Sorry its been a long post im just stuck with what to do now. Thank you for reading.

zzzzz Tue 17-May-16 07:37:45

Ask for an assessment for ASD when you see the consultant and read as much as you can. Do you get DLA? If not apply and use the money to get him lots of lovely enriching experience.

januarynewstart16 Tue 17-May-16 07:40:42

Hiya zzzzz no i dont get dla for him as i didnt know i could. He truely is a lovely boy, he seems to be getting further and further behind, his teacher said theres no way he is going to be able to catch up with his peers. So in my mind his just going to be tagging along. He does have one to one a few times a week with the ta.

zzzzz Tue 17-May-16 08:10:35

his teacher said theres no way he is going to be able to catch up with his peers

angry that sounds amazingly negative. If he has had such a rocky start he may be following a completely different developmental path. Are you thinking he will never read/basic numeracy, or is it more a case that he won't unless he is taught in a very different way.

DLA is how we focus funding on children who need more in the uk.

You can apply on line or if you get the form posted you can ponder it a little.

januarynewstart16 Tue 17-May-16 08:36:20

As his teacher put it im not a special needs teacher so i dont know how he will progress. This is when i asked her if he would be better out of a mainstream school. Errrm i think with his reading this is down to his memory problems. He forgets what the word was what he has just read so the story isnt making sense to him. He can read basic words like THE IS AND BUS CAR. He struggles with words longer than three letters due to him not being able to blend or do his phonics. Thank you very much for your information regarding asking about an asd test and dla information. I will certainly be asking if we ever get an appointment.

zzzzz Tue 17-May-16 08:43:12

His teacher can ask for an ed psych to assess and for any number of professionals to support her. She is teaching in a ms school so her remit INCLUDES all children.
He can stay in ms if that's how you want him educated and they must accommodate him as is.

As far as reading goes there is LOTS of support and phonics is not the only way to learn to read.

zzzzz Tue 17-May-16 09:26:10

When were you referred to community paediatrician? It can take a while, but you don't have to wait for them to start using ASD/ADHD techniques, just get a book and try.

Do you have an iPad? If so there are some stunning apps for both numeracy and literacy. smile

januarynewstart16 Tue 17-May-16 11:42:31

Hiya sorry for the late reply... He started his assessment late last year and was referred about a month and half ago. I havnt got an ipad but do have an iphone and an android tablet. Could you possibly give me some names off apps we could look at please? As for school they are giving him extra time to do his work as he cant keep up. His now got a reading ruler. He cant think what he wants to write and then remember to get it onto paper (dont know if that makes sense) so he has got like a dictaphone he can say what he wants to write. I know very little about adhd to implement and strategies to his daily life so will go away and gather some information on things i can be doing. School say no signs of adhd in class but at home its a different story. At school everything is routine they have like a picture timeline what they follow so they all know whats happening next. Something to look at from when he gets home? Thank you again

zzzzz Tue 17-May-16 11:52:54

If he can recognise the letters then I would start with pocketphonics (I know I said not phonics but it helped mine) If his reading is a bit better than that then try Montessori@home reading games they used to give you a trial for free so you could see if he can do it. It isn't a game really wink more like a reading scheme where you have to fill in word/letters and answer questions. Start at book 1 and just work your way through.
For maths Hyperion Games maths apps are brilliant and start at reception and do the entire curriculum to yr3.
If he needs to consolidate number and letters first then I would use Montessoriums Intro to letters and intro to numbers.

The best thing to do is to remove ALL the other apps off the phone/ipad and then allow him to play with your educational ones in the car, or for less time than he wants to in the evening.

For real life stuff have a look at AbsorbentMinds on line shop and copy the stuff or make something similar.

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