New member with social acceptance question

[Guest guest]

Hi all

We live in the UK and have a daughter called Nadia who will be 9yrs of age this

June with MDS

Academically Nadia is proving to be bright little button, however she does

struggle on a social level with her peers

She is in mainstream primary, and we would very much like to keep her in

mainstream going forward

But........ I just want her to be happy and have friends, social acceptance and

inclusion far out way academic achievement

At the moment she is experiences real problems with this at school which is

leading to challenging behaviour and mild self harming!!!!

Just wondered if anyone had any similar experiences or suggestions, a close

friend suggested trying to explain MDS to Nadia and explain to her why she is

different?!

Has anyone had a conversation with their own child about MDS and what it means

to them

Thanks

BRrds

Diane pastore

Sent from my iPad

[Guest guest]

Hi Diane-

I have been meaning to respond to your post. Here goes:

We too have a daughter who is 9 with MDS. She is mainstreamed and is testing at

grade level (3rd grade) although she has an IEP for writing, reading

comprehension and speech. She has also been diagnosed with ADHD (inattentive,

not hyperactive) as well as having a Executive Functioning Deficit.

We have chosen not to say anything to Lainy about having MDS. It won't mean

anything to her if we tell her. We haven't told her about her other diagnoses

either. Instead, we are talking to her about treating the symptoms that need

treating. She takes medication for the ADHD and we simply talk about the pill

as her " focus pill " . She herself, sees the difference when she takes it.

Lainy too has struggles on a social skills level. We are addressing this in two

ways:

Counselor: She is seeing a counselor as part of her IEP. They talk about how

to read body language/facial expressions and the difference between interacting

with acquaintances vs family members (she is too friendly to everyone). One

book her counselor told us he works with her on is called " you are a social

detective " . Check it out online.

Group Speech Therapy: She has recently started working with a group at a Speech

Therapists office (outside of school). The other kids in her group seem to have

ADHD, Autism and/or Aspergers (that's my guess from the waiting room though).

They work on conversations; how to take turns, making eye contact, making short

comments, staying on topic and appropriate comments that can be shared in

public.

We have been challenged when it comes to social skills because at times when I

talk to the Speech Therapists, they say " oh, we don't really address that area,

that is more appropriate for a counselor or psychologist " . So, I offer this

advice above but we are still wading through this and trying to define which

specialist can help with which symptom. Learning as we go.

I hope this has helped.

-Missy, with daughter Lainy, 9 (MDS) and son Colin, 6

> Hi all

> We live in the UK and have a daughter called Nadia who will be 9yrs of age

this June with MDS

> Academically Nadia is proving to be bright little button, however she does

struggle on a social level with her peers

> She is in mainstream primary, and we would very much like to keep her in

mainstream going forward

> But........ I just want her to be happy and have friends, social acceptance

and inclusion far out way academic achievement

> At the moment she is experiences real problems with this at school which is

leading to challenging behaviour and mild self harming!!!!

> Just wondered if anyone had any similar experiences or suggestions, a close

friend suggested trying to explain MDS to Nadia and explain to her why she is

different?!

> Has anyone had a conversation with their own child about MDS and what it means

to them

> Thanks

> BRrds

> Diane pastore

>

> Sent from my iPad

>

>