re MAteo

[Guest guest]

I am so glad that you are back in touch - or rather - that you have the

strength to get back in touch.

ZXoloft - works for many of our kids. For Elie, it was more like we

poisoned him as he became violently aggressive, wlak climbing crazy.

But his 'blocking' as you call it (equal to my 'freezing' ) term is I think

beginning to occur more frequently after some years of decreasing. I am not

sure yet - altho I am journal- ling again- if this because he has more

opportunities for doing or he is narrowing his own desires to do - or this

is something which needs a neuro psych visit to see if there is a

guess-timate as to what is the issue.

Life isn;t easy, but having Elie not at home most of the time is wonderful.

Just a 3 day w/e with him, and I am drained. The constant alert and

planning which goes into everyday living when he is home is exhausting.

On Tue, Oct 18, 2011 at 5:39 AM, Tracey wrote:

> **

>

>

> Liz, I'm so happy that Tori is going to school, and hope it continues to go

> well.

> I read your posts back in July

> about what you were going through with Tori, and it was so similar to what

> we've been going through over the years with Matteo. I'm sorry I haven't

> replied until now, but we were going through something so similar, and so

> upsetting, that it just left me like a wet rag, with no concentration.Add to

> that some serious family problems, and energy was all used up. I started

> various replies, but never managed to get anything finished, so I'll try and

> bring the different bits together here.

>

> Matteo is now 21 and I have recently started him on an anti-depressant -

> Zoloft - which he seems to be tolerating well, and which seems to be making

> a difference.

>

> Last summer, when I found this list, he had spent 11 hours in a car when we

> were away for a trip. Everyone tried to persuade, but nothing

> worked, until the right face came along and he decided to get out.

> On another occasion, at 2 a.m., after 3 hours of him refusing to get out of

> the car, I was so desperate I called the police - worse than useless! The

> person who took the call said they could send me an ambulance, but what I

> had hoped for was a voice of authority to get him out of the car. I declined

> the offer of an ambulance (but wish I'd thought of the Fire Brigade, as you

> mentioned!). I got back into the car, thinking we'd have to sleep there, and

> suddenly it was the right moment! My husband and elder son had gone to see

> his family for the weekend, but it's not as if they can necessarily get him

> to cooperate.Recently, he stayed in bed until evening - no toilet, no food,

> only

> water. At lunchtime I had told him his food was on the table, but it

> took till 7 for him to get up!

>

> I took him to a

> neuropsychiatrist we'd seen in the past a few months ago because the

> blocking/refusing was

> increasing, and he said that he would prefer Matteo to take a

> tranquillizer and leave the house, than have him decide he wasn't going to

> go out.

> Long story short, I started him on Xanax, starting with 3 drops morning and

> evening and increasing to 7.

> We had a nightmare journey over to England from Italy the following day.

> (I had started with the Xanax before leaving in the hope that the

> journey would be easier). At check-in he blocked and started to shake

> (something that had been happening periodically for a few years but which

> was getting worse, and which the neuropsychiatrist had told me was 'only'

> nervous tension -

> i.e. not dangerous). I asked for help and they got me a wheelchair, and

> assistance to get to the plane. We were taken up by the external lift,

> and I think the noise caused the problems, as he wouldn't get off the

> wheelchair and was dragged kicking and pushing to his seat. Incredibly

> upsetting for him (and me!). Thankfully the staff were fantastic, but we

> negatively impacted on air's success rate for planes arriving on

> time - no celebratory trumpet fanfare!

> The summer was a disaster - not getting out of bed -up off the toilet -

> blocking and shaking then for up to half an hour - taking a few steps

> forward and then twice as many backwards - having to run his hand down the

> wall before he moved at all. But what really frightened me, and I am ashamed

> to admit this, was the level of frustration I reached on a couple of

> occasions, when I totally lost it. I tried to push him to get him out of the

> car, but he has super-hero strength when he is in resisting-mode. I was

> absolutely beside myself at this point and I'm ashamed to say that I smacked

> him.

> I have so rarely lost my temper with him.

> It frightened me realize that Matteo could always be at risk of abuse, if

> I, his mother, who loves him more than anything in the world, could so lose

> my temper with him. And I also realized that I needed to do something for

> my own sanity.

>

> When we got back to Rome I took him to see another doctor, who said that

> the tranquillizer depressed

> Matteo's reactions still more. He said Zoloft has been used to treat

> selective mutism,

> and we know there is an element of choice (a small one). Years ago he

> wrote, 'I could speak, but I

> don't because people don't understand me'. And I

> remember, when he was younger, him repeating a word 4 or 5 times before I

> understood him. He just decided not to put himself through that!

>

> I know none of this helps with what you are going through with Tori, but I

> just wanted to share this so you know you're not alone with this behaviour.

>

> So much great advice was given about Tori's problem, and so much resonated.

> 1. the pain issue. I know he had an ear infection at the beginning of the

> summer, as we had a day of total non-cooperation and then the next day I

> noticed a lot of wax and some discharge - so antibiotics!

> 2. the lack of control our children have over so many aspects of life.

> Reading the advice helped me to look at things from his perspective

> -something I thought I did automatically, but which I realize I wasn't

> always doing. I've made a conscious effort to try to provide choices.

> 3. the whole issue of communication. Matteo writes (very slowly) with a

> touch on his neck,

> but would not write a word for about 5 months. (Thankfully, he has started

> again). But it's very hard when there is a refusal to communicate, and a

> closing off.

>

> I really related to Sara's

> description of the ASD moments - which are outside his control - and the

> DS moments - which are outside MY control.

>

> In our case, the DSA psychologist told me Matteo was probably grieving for

> the security he lost when he finished high school last summer. School had

> provided a structure; he saw the same classmates everyday, for whom he was a

> mascot. It's a very different world after school!

> Like many parents on this list, I had resisted the idea of medication (our

> problems were not so serious that we needed it). But back in spring I

> understood that he couldn't get through this without help. He's been taking

> the anti-depressant for 5 weeks now, and though there have been a few

> episodes of trembling/agitation life is a lot better.

>

> I was talking to a friend yesterday, who said she had been worried about me

> this last year as Matteo was taking up so much of my energy, and that she

> was glad to hear me sounding more 'normal'. But my own mental state is so

> closely linked to his. I've known the balance wasn't right - and

> have felt I've turned into a bore - work is hard, the family suffers

> because the energy is too much within the family. But it's been hard to do

> anything to change things.

>

> I do see light at the end of this tunnel - the signs of his distress had

> been there for a few years now, but we reached a point this summer when

> what had been an occasional problem just expanded to fill all the space

> available. The doctor has said he'll need the anti-depressants for quite a

> while to stabilize the situation, but having seen the difference I'm fine

> with that.

>

> I really hope things are better with Tori than they were, and am intrigued

> by the idea of hypnotherapy, so keep us informed.

> Love and prayers for you all.

>

> Mum to Matteo, 21

>

>

>

> ________________________________

> Da: ariella

> A:

> Inviato: Lunedì 12 Settembre 2011 15:56

> Oggetto: Re: Not a good Day

>

> I am so sorry to hear this. What happened? HUGS!!!!

>

> On Mon, Sep 12, 2011 at 9:53 AM, Liz DeSantis <lizdesantis98@...

> >wrote:

>

> > Sorry,guys...Just wanted to let you all know that I am at a

> loss as to what

> > to do about Tori. We COULD NOT get her on her bus today. I broke

> > down..and

> > am calling every support I know to find out what we can

> do. I F*N HATE

> > AUTISM!

> >

> > --

> > Liz DeSantis " Anyone can give up, it's the easiest thing in the world to

> do.

> > But to hold it together when everyone else would understand if you fell

> > apart, that's true strength. " - Reeves

> > " Let me win, but if I cannot win, let me be brave in the attempt'. -

> > Special

> > Olympics Motto-RIP Eunice Kennedy Shriver

> >

> > “When we long for life without difficulties, remind us that oaks grow

> > strong

> > in contrary winds and diamonds are made under pressure.-Author Unknown

> >

> > " Knowing trees, I understand the meaning of patience. Knowing grass, I

> can

> > understand persistence. " - Hal Borland

> >

> >

> >