Feeling quite isolated..

[Tegans Mama]

I know not many people will reply to this thread, but I feel really isolated just lately

Tegan can't walk and she never will - she can't crawl properly (she army crawls) and I am tired of her getting stared at because she is a little bit different. We can't take her places where there are a lot of young kids (like baby/toddler group) because we are forever watching for other kids standing on her I am just so tired of the fact that I feel like I can't take my baby to be around other kids for fear of her getting hurt.

And there is absolutely nothing I can do to change it, because I can hardly pin her in one place whilst we are out just because other kids don't know not to stand on her, and push her over.

Pointless really, just had to get it out.

 

[Nikkinoonoo]

I'm so sorry you have been feeling isolated. I know Jessica's problems are much different to Tegans, but I have been there (before we got her prosthetic). I get times when it all get's on top of me, when she tries so hard to do something but falls because she hasn't got her leg on etc. I spose I don't really have any advice, just wanted to let you know you wasn't alone and to throw some in your direction
xXx

 

[Tegans Mama]

Thanks hun, it just feels like there is no one to talk to because no one understands Can't even take her to soft play areas because of the same problem The only place I feel safe to let her do her own thing and know that she won't get stood on or knocked over (by either another kid or an adult, yes that has happened ) is at home or at CLOSE families houses (either OH's Mum, my Mum or my sister)... Tis doing my head in a bit

 

[Nikkinoonoo]

We've taken Jessie to a soft play thingy called snakes and ladders. We went midweek and it was fairly quiet. Theres an area for 2's and under which is where Jess went (obv) and I followed her about and sat in the ball pit with her, held her on the little slide and slid her down, put her on the swinging aeroplanes and stuff. Maybe it would be worth checking a few out and seeing if there is a way you can 'play' with her like that? They also did concessions for disabled children so her admission was half price.
I don't know very much about SB so sorry if I have suggested things unsuitable
xXx

 

[Tegans Mama]

That sounds quite good hun, thankyou for the suggestions, I think I might try it next week. OH wouldn't be up for it probably (bah humbug! ) but my sister would come with me. I just always feel like the odd one out, and it gets to me that every time I meet a new person they have to ask 'whats wrong with your baby' etc etc.. I have no issue with telling them but it gets repetitive after a while!

Because of her SB Tegan has no control from her waist down. She can sit by herself which is a godsend, because she shouldn't be able to medically speaking. Its just hard sometimes

 

[Nikkinoonoo]

I hope you find somewhere suitable, shame you're not from London or I could meet you at Snakes and Ladders with Jess. Even when we put Jess in the highchair for a break of Milk and Quavers (lol) she loved seeing all the kids running about from area to area. She sits there waving at them bless her.
I really hope you find somewhere suitable, sounds like it would do you both good to get out there for an hour or so xXx

 

[Tegans Mama]

I wish I was closer to a lot of people I know through here and Facebook hun, it would be great because I have some really great friends online, but is just not the same as friends IRL is it? Online friends you can visit etc, but they aren't there when you wanna go somewhere randomly

I know where we will go, theres a place near us called Easy Tigers, I was meant to go before but since I don't drive its a bit out of the way! I'm gonna ask my Mum to take us

 

[Nikkinoonoo]

Good luck with it, let me know how it goes
Might be worth waiting for the schools to start again too xXx

 

[Vickie]

just sending you lots of

 

[velvetina]

Wanted to send you a hug hun.

I remember the early days with my son (he is autistic) so well, the strain of going to public places and seeing other nt children trying to engage or adults watching him because he acted differently or was so stressed because it was too busy and we would have to leave. It did get better and easier with time, but there are overwhelming moments when you just have enough and it's ok to voice it.

I think Nikkinoonoo had some good advice about going at quiet times and do ask about concessions. We only paid a £1 entry (instead of about £6), it all helps. You may also like to ask your health visitor if there are any groups that meet in your area so you can find friends who are going through the same thing. I have met some long standing friends through the speech and language nursery my son attended, it really helps having someone who is in a similar position to you and understands totally how you are feeling.

Take care lovely. x x

 

[oldermummy]

Hi, it is difficult if your child has difficulties getting them out and amongst their peers, my son is being assessed for autistic spectrum and I was referred to a place called the toy library, i believe they have them dotted around the country, they are like a play group for pre school children with all types of special needs. They only have about 3 children per session and have a nursery nurse for each child. I am sure there should be something similar in your area, get in touch with your health visitor and see what she can suggest1 Good luck

 

[Mumof42009]

I wanted to send you Tegan is gorgeous i wouldn't care what other people think sod them every child is unique and different in one way or other it would be a boring world if we were all the same! xx

 

[Midnight_Fairy]

do you have any sure start centres near you hun?

 

[littlekitten8]

Hey hun just wanted to give you massive hugs. We have a place around here (can't remember the name off the top of my head) which is a soft play place just for kids with special needs. I went to the one back at home as part of my nurse training and it was brilliant. Even had its own outdoor play area for the older kids. I will look for it when James is fed and asleep and let you know what its called.

 

[Tegans Mama]

do you have any sure start centres near you hun?

We do, and we've tried them. People seem to think its ok to let their children stand all over Tegan. It makes me so mad. Because she's disabled she's seen as less important.

 

[Midnight_Fairy]

Oh thats a shame.

I kind of know how you feel but in a different way. My child was always the one that the other parents disliked! While the other children played nicely my son wouldnt interact and would bite or hit when frustrated. He was the only one out of the august babys thatw asnt talking etc I knew there was more to it then naughtyness but whilst diagnosis was going on I was made to feel like an outsider. I just gave up going in the end.

Its such a shame that people are so judgemental.

I ended up not taking him anywhere to be honest as he used to be a total pain and it was far easier just me and him.

He is at school now and it makes it alot easier. I do look back and feel like I was pushed out of all the parenting groups though

 

[Pyrrhic]

I am so sorry you're finding things lonely in RL You are such a wonderful person, you really don't deserve to feel this way.

Is there a special needs parenting group in your local area? If so, it might be an idea to join. I'm such a place like a soft play area would be happy to set aside an area on a quiet day of the week.

If there's not a group, have you thought about making one? There are probably quite a few Mummies feeling the same way as you

 

[Mamafy]

I have nothing to add hun, it's awful how some people have so little regard

Tegan is absolutely beautiful, here for you

 

[Tegans Mama]

I am so sorry you're finding things lonely in RL You are such a wonderful person, you really don't deserve to feel this way.

Is there a special needs parenting group in your local area? If so, it might be an idea to join. I'm such a place like a soft play area would be happy to set aside an area on a quiet day of the week.

If there's not a group, have you thought about making one? There are probably quite a few Mummies feeling the same way as you

Thankyou hun It just feels kinda like hitting your head against a brick wall, Our town is a big town but we live very close (but not close enough for frequent trips Unless we've got a hospital appointment for Tegan) to a big city, which is where all the groups are held. Since neither of us drive, although I am learning this year thankfully, its hard to get anywhere.

Thanks Mamafy, its nice to know I have somewhere to go when I feel a bit crappy

 

[helen1234]

have you go a sure start centre near you, they have sensory rooms etc, i bet she'd love that ours has soft play room in there too.

https://childrenscentresfinder.dire...hire+Northamptonshire+Nottinghamshire+Rutland

here's the list of east midland ones