Developmental disorders/learning disabilities/genetic syndromes & more support group

[RachA]

Thank you both. That was so helpful.

We've already had one meeting with the school. She has her stay and play in something like 2nd July and then we have another meeting on the 9th or 11th July (too many dates to remember so it's a good job I have them written down). I'm really hoping that we know by then if she's getting a statement. If it's looking like she won't get a statement then after the 9/11th we'll be having at least 1 more meeting with the school to discuss things.

 

[bumpin2012]

rachA, that sounds very stressful! I can't add anything that will be helpful, but I hope everything works out for your girl

 

[sequeena]

Oh Rach good luck. I was actually discussing a statement with T's community nurse and disability HV today. It sounds so stressful and takes at least 6 months. Then you're not even guaranteed to get one!

 

[RachA]

They are changing how they do them and from september they aren't going to be called statements. I think that once you get to the point that they are definitely going to assess for a statement then they are saying the child definitely needs help. The criteria then is how much help. Schools, in theory, have the resources to provide the first 17 hours of 1:1 and if its more than 17 hours then a statement is more likely to be issued.

We have slightly bypassed the system as when we sent the request in for the la to consider assessing for a statement we also sent in all the evidence needed (we were advised to do this by the la). So although we should only be at week 6 of the process we are actually at week 12 so we should know in 6 weeks if she is going to get one or not. I actually takes a maximum of 6 months - by week 18 of that you will know if one is being issued and if not then you appeal.

It is stressful but i can cope with that as it's definitely something that she needs. The thing i found the hardest was writing our report on Esther as it was so bleak.

 

[annanouska]

rach you wait until she's in the Christmas play I had the hv with us yesterday and we got on to school. She said the children are so accommodating with children with additional needs and there's not the same awkwardness you get with adults.

We had a play date with m's little friend today, he struggled a bit more than usual for some reason but he ended uploading peekaboo with her arou d a curtain.

No idea why he likes her and can tolerate her where as can't others. He did gt a bit rough tho and tried to run her over with a ride on car

 

[Tiff]

RachA... you sound exactly how I did last year when I thought of all the things NT kids could do but Claire could not.

I'm not the beacon for all things Autism parents or anything, or what kids with SN can do vs NT kids. I found that the comparing to things drove me CRAZY and I just had to stop focusing on what other kids could do, and on what Claire was doing and her own individual progress.

It is SO tough. SO SO SO SO SO tough. I see the reports, cards, drawings, letters, notes that my friends kiddos write for their parents, I saw them at Claire's birthday party where pretty much every card was a homemade card from one of her classmates. It broke my heart. Claire can barely write her name, she has a tough time holding a pen/pencil and she's just not there.

I struggle with what to say to parents who are in the same boat, but maybe a bit later on than what Claire did. We're not the guideline, iykwim? But I hand on heart believe that she will find her path. And no, she may not be on par with what the other kids can do but she will progress, and she will learn things.

If there's anything I can suggest, is to keep in constant contact with her teachers when she gets to school. Don't be afraid to be "that parent" (something I struggle with) and question things if they don't feel right, ask for clarification on things and be involved as much as you can.

Claire gets a communication book sent home with her, and I caught her teachers in glossing things over with her. We had new neighbours move in, and their son is a year ahead of Claire. He was quite distressed one day coming home from school as he saw Claire sitting out in the hallway with her EA crying. He didn't understand why she was upset. Her note for the day? "A good day!!!!".

So when I questioned it, I found out that her crying out in the hallways is a normal thing! She's been in school since September and only at the end of April I was finding out that "A good day!!!!" meant her crying alone in the hallways?

Now they're more forthcoming with her having a rough day, and the teacher ended up calling me and explaining things. But still.

Ugh. I hope I am not scaring you more for an already scary time!!!! Just don't be afraid to say things and whatnot and don't be afraid to question things either.

For what it is worth: I was worried about Claire being the "odd" kid as well. But at this age for the most part kids don't pick up on how different they can be. When I pick her up from school, she's got about 5 different friends yelling "bye" to her and that they'll see her tomorrow.

It is SO tough being a SN parent.

Sorry for the novel

 

[RachA]

TIFF-thank you so much. Your reply nearly brought me to tears in my local coffee shop (as have the other replies).
When I first started posting on her I felt I was a bit if a fraud because my daughter was *just* speech delayed. But you've all been so wonderful and supportive and so helpful.

I think it's just the whole unknown thing you know?! Once she's at school I'm hoping it won't be quite so up in the air.

I've never wanted to be THAT parent either but I know from the past 2 years of Esther being at preschool that I need to be. I regularly chat to her key-worker for 19-15min at the start it end if the day and I also talk to her in the phone to catch up with things. I don't think in going to get that kind if service when she's at school!

Tiff, I think that's awful that you've only just found out Claire is crying at school. I hope they are being much more honest with you now. That scares me about school because I know the teachers aren't 100% honest about what goes on although in some instances it's because they find actually know!

Thanks again


And Tiff, just noticed that you live in Ontario. My sister who's been my support for the last few years has recently moved to Ontario!

 

[annanouska]

rach I felt a fraud too but now I realise all of us in here want the best for our children and face similar struggles due to their delays and disabilities etc.

My hv suggested picture cards for us whilst on the list for sign language? I'm presuming along the lines of PECS but they won't send us to any training and the proper pecs guides are very dear. I've noticed he's pushing and grabbing more recently out of frustration to try
And tell us something. Any experience on here of how to go?

There was a girl at the park today. The girl seemed ok but her mummy was shall we say disengaged she was there on her iPad not even watching the girl ( about 3 Ish?) she was following my lo so close behind him then chasing him as he tried to get away. He was getting really distressed so I took him well away nd tried to calm him but she kept following then shouting at him this was breaking point and he bit all his fingers keeps spinning sound in a circle then crumpled in a corner upset the mum started shouting at her girl to leave him alone so I just calmly told her he has some additional needs and does t play quite the same,d to which she tutted and told me not to bring him to the park!

Sorry for the rant, just upset me and irritated me!

 

[sequeena]

OMG! I am furious for the ann! What did you say to her?

Well fuck me, heaven forbid that a PUBLIC park be used by an additional needs child. Heaven forbid that the mother put her ipad down for 30 minutes and play with her own daughter?!

Things like this make me so angry. Today someone on a FB group said that if we decide to keep our disabled children then we should be prepared to pay everything for them. I went into a massive rant. Our children deserve to live on this earth as do all other children.

People who hold these ignorant and prejudiced views disgust me.

 

[nicki01]

Wow them comments I've just read are awful!
I hope your not to down Ann, that's so nasty. And I'm glad you had a rant on fb sequeena.

Things like this make me very relieved that I have a child with additional needs and not someone like that, although I'm sure there attitude would swiftly change! Sad really.

Rach I haven't forgotten about you!! My appointments are just starting to slow down a bit and I'm a bit more settled in the new house (although not completely and not very happy here but that's a whole different story lol)

Would your LO be happy to go to a park?
Thinking when we have nice weather back maybe we could meet at a toddler friendly park one quiet morning? Or a quiet cafe somewhere?

I can't do ball pits or anything noisy and major busy as it sends Charlie loopy! Lol. Unless she is in her pushchair being fed ha ha!

 

[RachA]

Ann-that's terrible, I can't believe people can be so ignorant.

Iro the pecs type stuff-I haven't done the formal training for it because Esther was really passed the point of being able to do it properly. I would suggest doing a communication board to start off with. Basically use an a4 sheet of paper (landscape). Write/type 'communication board' across the top and have 6 box outlines. Inside these out some Velcro. The print off 6 little pictures of things that you know he likes having/playing with/doing (I chose strawberries, milk, bed, bath, jigsaws & Duplo). Then if she wanted any of those she had to go and get the picture and being it to me and I would say something like 'Esther's wants...?' Once he is doing that well (even if he's not saying the words) you can progress to a book. Once you get to that point you can ask me the. How to set it up. Esther didn't respond well to the book.


Nicki-I know what you mean about people like that. My mum said that really special people have children the have special needs. I that kind of sounds like it's saying that 'normal' kids aren't special but that's not how it's meant. I guess it's saying that it takes a special kind of person to deal with children that have additional needs.

We could definitely do a meet up at a park. I would suggest after half term as it'll be busy over half term. There are a couple of nice parks in Christchurch and one on the cliff top. I tend to avoid Littledown as it's too big and unless I literally trail after Esther I can too easily loose sight of her. I don't tend to do soft play areas as I pay and Edther ends up not playing!!

 

[annanouska]

sequeena your comment made me more mad! How rude!!

Thanks for the tips Rach going to give that a go, glad you told me to have 6 rather than loads of them!

Interesting about soft play, mine just wonders around but really seems to like it! He will climb and o down the slide. He loves the ball pit. If its busy tho or noisy he can't cope.

He doesn't like crowds and loud noises. But it's certain noises, the Hoover is ok

My hv is calling in each month? Is that normal? She said its just to chat and offer support. She's quite nice tbh and got him his referral when he lost all his speech really quick.

X

 

[sequeena]

Yes it's normal I had monthly visits for a long time then it went to 3 months. I've not had one for a long while as my HV left and I've yet to meet my new one... though T now has a disability HV too

T also isn't massively keen on soft play. He loves it in the sense that there are a lot of children there but he doesn't like the actual jungle gyms so I pay for him to run round really

 

[moggymay]

jealous of you guys getting to meet up....we went to a fab park when we were on hols in Bournemouth when DS1 was small....on the Poole side and it had a train that went around too

 

[RachA]

sequeena your comment made me more mad! How rude!!

Thanks for the tips Rach going to give that a go, glad you told me to have 6 rather than loads of them!

Interesting about soft play, mine just wonders around but really seems to like it! He will climb and o down the slide. He loves the ball pit. If its busy tho or noisy he can't cope.

He doesn't like crowds and loud noises. But it's certain noises, the Hoover is ok

My hv is calling in each month? Is that normal? She said its just to chat and offer support. She's quite nice tbh and got him his referral when he lost all his speech really quick.

X

Yeah too many will confuse him. Get him solid on those first 6 then introduce the book.

We've never had the HV call each month but she does attend the meetings that we have roughly every 8 weeks to talk about Esther's progress. She's nice though so I wouldn't have a problem if she did check up every month.

 

[RachA]

jealous of you guys getting to meet up....we went to a fab park when we were on hols in Bournemouth when DS1 was small....on the Poole side and it had a train that went around too

I assume that was probably at Poole Park. Was there a lake too?
We're quite a distance from there but I have been to the park a few times. The hospital where Esther has her check ups is in Poole.

 

[moggymay]

Yes, we fed the ducks

 

[RachA]

It's lovely there-takes about 30min for us to drive there though so don't often go.

 

[Blueberri]

I feel like the only adult with a disability or two!

 

[moggymay]

I love having a park like that, far enough away to make it a treat but close enough to be a looked forward to yet relatively cheap afternoon out The relief of having the space to let them be free when they don't quite understand danger is lovely - and enough time to catch them up should they leg it!