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september 2008 mamas, i can't find the last thread we had with eachother.

36 replies

eandz · 11/05/2011 11:29

I kinda need to channel the few of you again, I feel like you're my closest friends in England.

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Becaroooo · 11/05/2011 12:08

you found us yet e???

xx

StarlightMcKenzie · 11/05/2011 12:31

Yeah, where are you?

StarlightMcKenzie · 11/05/2011 12:31

Hi eandz Grin

eandz · 11/05/2011 13:46

i'm here! i had to drop N off at nursery. everything is getting worse and a little bit better. i can't really comprehend much these days. i'll post full in a second.

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Becaroooo · 11/05/2011 13:51

ok.......

eandz · 11/05/2011 15:01

Guys, is this because I'm American and don't understand British social situations? Just a few random bits of why I'm freaking out over everything.

So, N was getting SALT but when she found out N was going to see the audiologist and then had a proper developmental pediatrician appointment she said that her services were going to taper off, but she never made the final appointment. I'm confused about that bit, am I just supposed to forget she was supposed to come over? I've sent a letter asking why it was missed. Our developmental pediatrician appointment is next Friday and it's with a dv ped+salt. I don't think it will be the same SALT who was giving N his therapy at home. What should I expect?

Initially I was told that one of the first steps from my end was to put Noah in nursery, I knew that it wouldn't be a miracle, but it would give him more opportunity to socialize and maybe learn a little. So The week of March 20th, I did start settling him in. The first week into nursery he came home and had diarrhea so I didn't take him back the rest of the week until he got better, and then resumed settling him in the second week. Two days into the second week he came home and was covered in rashes had a fever and I ended up taking him into A&E only to be told he had chicken pox. (I refused to believe it because I know what chicken pox look like, I've had two years of epidemiology in my biochem/microbiology degree which was on the American track for Medicine). Anyway Noah got sicker, lost 5lbs and after the 5th gp appointment I decided to take him to a private dermatologist who also works for the NHS in the same capacity who agreed with me and diagnosed Noah with an eczema flare that had been infected with staph. He had to have two very different courses of antibiotics because at that point, his rashes had another infection growing on top of the staph. So he was off another two weeks. When he finally got better it was the royal/bank holiday week and we had already sorted out a mini holiday so off we went to Paris--ending in N having to go back to Nursery and settle again. When I went to re-settle him in, after the second day they told me to just leave him and we'd have to do the settling in 'cold turkey'. My dermatologist suggested that he may have been exposed to a few things that he was allergic to, but I made it clear what his allergies were when N was accepted into nursery.

I think they asked me to settle him into nursery 'cold turkey' because on the first and second day there was another mother who was settling in her son (R) (same age as N) and she kept making references to R with SEN as well as N and comparing their settling in, which I thought was pretty hasty on her part, but kept to myself initially. I didn't say much to her regarding her comments because N kept trying to get my attention and hinting to leave. During another one of her comments (She said she had paid privately for ABA), since I didn't know exactly what her sons issues were, I mentioned that N was being assessed for ASD. She responded saying that the council refused to assess her son because he was too young. Which confused me. Anyway, I left my N in the room they were in even though he was throwing a massive tantrum (because I refused his polite requests to leave) and went to the parents room to see if he was just throwing the tantrum because I was there. The SEN coordinator was the one who told me that N was throwing tantrum because I was there and he knew I had the power to take him home--she suggested I go to parents room. Anyway, N's keyworker (who is also R's keyworker) came down to update about how N had settled down and had begun to play and eat his snack. So I told her that if R's mother wanted to talk, I would love to since she was supposed to come to the parents room too and I would love to have a conversation about the council/autism assessment/boys same age having sen. Key worker happily went upstairs and said this to R's mother. Moments later the SEN coordinator came downstairs to tell me R's mother didn't want to speak to me, and I didn't know R's issues, and in the future perhaps to just not bother other parents at nursery. Anyway, I felt pretty horrible for offending her even though it wasn't my intention and then the SEN coordinator told me that it would be best if we tried settling N in 'cold turkey' because the settling in period was taking forever and it may be best if I just left. Anyway, N isn't really settling in at all and when I leave him he's crying and generally when I go to pick him up he's crying. I wonder if he even stops in the middle? A few things that are making me even more paranoid than I already am, 1. On Monday my DH went to pick up N from nursery and N had red stains all around his mouth. I made it quite clear I didn't want N to have any red fruits, because he has a suspected allergy which we are waiting to be tested for (His GP requested it) 2. Yesterday when I went to get N he was wearing some other child's sweater. I'm worried about his skin already, it's very sensitive and he's allergic too soo many things, I would prefer him to be in clothes I know that are clean and washed in a detergent he won't have a reaction to+his bag of extra clothing was on his peg untouched, so where did they find this shirt from? What happened to the one he was wearing earlier? And 3. Whenever I go to pick him up, someone attributes another internet symptom of ASD with N that he never demonstrates again in front of me or consistently with any other nursery staff. For example, the first day a few weeks ago one of the staff told me N had a serious issue with doorways. The next day, someone told me he was obsessively building towers with building blocks, then it was an issue with a large group of kids near him on the playground. Neither of these behaviors are consistent of the little boy I know to be N. We go out all the time, he's never had a problem/fascination with doorways. He has tons and tons of blocks at home and he's never interested enough to ever play with them.

Generally, I feel like the nursery are decent and caring but maybe I'm wrong? These details aren't consistent with my general feelings of the nursery.

So, is he really just picking up random new behaviors and then stopping? or is everyone just incredibly busy that they google ASD behaviors and decide to give them to N when I come to get him and ask how he was? Although they give him these traits, they also say some pretty truthful things that I can agree with which are always positive (mirror playing, being kind/hugging people and wanting to cuddle, they all tell me they love having him there and that even though he doesn't care much for the other children, the other children like him and miss him when he leaves). So, I feel like they do like him, but maybe they're just saying this stuff to me? I don't know. Maybe I have ASD too.

Through the SALT i've been in contact with a therapist who comes over once a week to talk and help me through stuff, but she doesn't really help me get through anything--and she feels a bit judgmental with regards to my housekeeping. (I've never really learned to clean or generally be domestic ever, I've always relied on cleaners but have had such bad luck with them that as of two weeks ago I decided to do it on my own and it's taking forever to reorganize and set the kitchen/bedroom/bathrooms/living room up the way I'd like). For example I have an autoimmune disease, N has had on and off reflux issues+allergies+getting sick, my husband has terrible allergies, my sister has a few medical issues too, not to mention we often find ourselves traveling to third world countries often and more than likely we don't know until 72 hours before (Dh's husbands work just requires him to travel and prefers to travel with me if he can) needless to say, our medicine cabinet is more like a medicine wall+several first aid kits etc. She wanted an in depth explanation of all the medication I had in my home. It took an hour. Did I mention most of my family is full of doctors and the same goes with Dh's side+I'm Texan and we believe in buying everything in bulk+I live in the tiniest flat in London. The GP's I know are huge hypochondriacs btw, so generally their relatives keep mini pharmacies at home. My question is, is therapy supposed to make me question my own sanity? I never intended to be a housewife, therefore I never felt the need to learn how to take care of a home. I didn't intend on getting married+having babies and then do large amounts of laundry. Where I'm from you send your delicates and your work clothes to be cleaned and they just show up in their drawers. You share the cost of a cleaner if you're a student/single and your home is tidy when you get back. Dishwashers and dryers are staples, and if you turn the dryer at the right temp and get your clothes out right away, you don't need an iron. (I've never used an Iron, it seems dangerous!). This isn't the way my life will be anymore and I understand that I have to do it all on my own+husband will do his share too, but surely I'm not the only spoiled brat who has had to become independent, right?

I feel completely inadequate to make any judgments and I'm pretty scared with regards to the future of my home and son. Also, I'm still ignoring the strain of all of this on my marriage. Will he get fed up and just leave me? Will I have to look for warning signs? What are the warning signs? Do I need to keep reading the relationship section and be on the lookout? Am I just too immature? Whats going to happen to me? What do I do? I've been on my period for like 2 weeks now so I haven't been able to have sex. Is the lack of sex going to drive him away? He seems to be okay, but I haven't been kissing him much these past few months (since March, we've only made out twice and the love exchange isn't averaging too high either). I'm truly scared.

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eandz · 11/05/2011 15:07

Did I mention I took N to see a dv pediatrician (privately) who practices on NHS and closely works with the dr who will be seeing N next week and he diagnosed N with HFA, but I'm not too sure how since I didn't see him give N any problems to play with, didn't pay much attention to anything N was doing, And this Dr spoke to my chest for the full 1 hr and 30 minutes that we were there. Also he put N's head on the 30th percentile--which again I can't figure out how since N wouldn't let him measure his head. When I measured his head (while he was sleeping) it fell on the 95th percentile. Who decides on whats right? Do I need to go smoke more cigarettes to calm down? I don't drink, otherwise I would have been drunk by now.

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eandz · 11/05/2011 15:13

I'm sorry girls, I know I sound like a loony tune. I can't multi task. I'm a terrible writer, I can see how incoherent my posts are. I know other MNers would judge the hell out of me, but I feel like you guys know me a little bit so you'll kind of understand a little bit where my craziness is coming from.

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StarlightMcKenzie · 11/05/2011 15:20

eandz Please re-post this all again in another thread with a title that is more likely to get experienced and experts in this area.

I think you are interpreting your confusion with being american, but honestly no two parents have the same experience of the system and the professionals, it is inconsistency and amiguity a go go......

StarlightMcKenzie · 11/05/2011 15:22

Sorry, I can see how vulnerable you feel. I'm not refusing to help, I just think that there is no way the other MNSN will judge you and they can offer loads of help.

Are you looking for Leonie too?

eandz · 11/05/2011 15:26

everyone is welcome to come here, and everyone is welcome to comment and help with advice I'm just hoping for the comfort of familiar screen names.

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eandz · 11/05/2011 15:27

but even if it's not a familiar person giving me advice, I wouldn't discount it. beggars can't be choosers and I may need some tough love.

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eandz · 11/05/2011 15:28

and yes, if Leonie is around, I'd love her input if she has time to give it. Anyone's input.

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StarlightMcKenzie · 11/05/2011 15:28

LOL, okay, -fair enough.

eandz · 11/05/2011 15:33

btw, I'm soo glad you're back. I didn't realize it till recently! I met Ruth, she came to visit N!

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Marne · 11/05/2011 17:18

So sorry you are having such a tough time (i post on the sn board and find it very usefull). 2 years ago i was where you are now, i have a dd2 with HFA who sounds very similar to your ds, she started a sn nursery 2 years ago as well as a MS nursery, her behaviour was very different at nursery to begin with, the stress of starting nursery triggers lots of traits/sensory overload. The thing with the doors could be because he links it with going in and out of nursery (and you leaving him)? My dd had a thing about doors and would get upset about going into a different room at nursery of going outside to play. Dd2 took 6 months to settle, i stayed with her for 2-3 weeks and eventually managed to leave her for the 3 hours, she would often be crying when i picked her up as she knew it was time to go home (putting coat on, music/story time), i used to take her a treat (food) to calm her down for the journey home. After the 6 months of crying she started to enjoy it and settled in (this 6 months was very hard for me and dh, any stress/upset puts strain on a marage). She's now at MS school (reception) and is doing great, it does get easier, i would say things were at their worst when she was 2-4 years old.

As starlight said 'you would get great advice on MNSN as there are many of us going through (or have been through) what you are going through. I hope things get easier and less stressful for you.

eandz · 11/05/2011 17:21

Thank you Marne, your post makes me feel a bit better. I just want to stop being soo jumpy and gain some confidence in my mothering abilities.

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Marne · 11/05/2011 17:38

eandz- you sound like you are doing a great job with your ds (even if it doesn't feel like it), the mum that would not come and talk to you is the one with the problem ( i always found it really helpful to talk to other parents with sn children). Its a very stressful time going through diagnosis, at times i was in bits and felt useless Sad. Dont be too hard on yourself, you are doing the best you can for your DS.

Marne · 11/05/2011 17:39

Oh, and i am useless at keeping the house up together and i have a large medicine cupboard with a life times supply of drugs inside Grin (i like to be prepared).

Triggles · 11/05/2011 18:20

eandz - hi. I'm American as well, from AZ (well, grew up all over states due to father in military, but settled in AZ for majority of years). My DH is British, so I've been living here in the UK for the last 8 years. So I know sometimes you feel a bit like you're on the wrong foot with both the medical and school system. But if it helps at all, having been going through the assessment procedure with our DS2 for ASD/ADHD/etc, it's confusing and difficult for everyone! Different areas do things different ways, and often you feel like you're going in circles. Plus, of course, the whole situation is stressful as you are worrying about your child and their future and how it's going to affect the rest of your lives. Give yourself a break.

Oh... and my house is not always neat (ok... rarely neat! Grin), and I tend to stockpile meds "just in case" and the only reason I don't have huge bottles of tylenol is because I've used them and not been back recently to pick up more. Grin

TotalChaos · 11/05/2011 20:11

Hi eandz - therapy shouldn't be about you paying for someone to make you feel bad, sounds like it's not working for you at all.

about the nursery - it's very hard to know as it's such early days, as he's unfortunately had so much time off for illness. I would keep a careful eye for now, and if you really feel you can't trust them, then take him out and look for another setting.

about the nursery mum - how strange. possibly she was a bit upset that her son was being denied an assessment?

in terms of the SALT - what I wonder is whether the SALT pulled out as she assumed that after paed appointment your DS will be referred to a more specialist SALT (this happened after DS' one and only paed appt btw, despite not getting ASD DX, just traits, he got referred to an ASD specialist SALT). So I would take the chance to ask the SALT who attends next week wtf is going on, (if you forget you can always phone up or write in after).

rebl · 11/05/2011 20:34

I'm not one of the people you are 'looking' for but having read your post I can't just ignore.

Firstly, the nursery stuff, that all sounds odd tbh. I'm not sure what I make of it. Why would they not want you talking to other parents? I can sort of see the whole settling thing taking forever maybe not being the best thing. But as mother of a child with multiple allergies I would NOT be happy to see my ds in someone elses clothes (unless his had run out) and clearly eaten red fruits when I had said he couldn't. In my mind if they can't take that seriously then can they take everything else seriously and be trusted? I guess you have 2 options, you pull him out or you give it some time and let the nursery staff settle down a bit to your ds before making a final judgement.

The councilling really shouldn't be making you feel worse. I had counciling like that for a while. I stopped it because I was feeling so much worse because of it. I eventually went to the GP and asked for CBT. That has been the best thing I've done and its stood me in good stead for years now. I understand my feelings, can control them and can recognise when I need to take time out and I rarely hit breaking point now. Maybe it might be worth visiting the gp talking through with them what options are available to you.

As for being a domestic goddess, erm, well, erm, you're not talking to the right person! I know how to use my hoover and I own an iron but don't use it. We don't live in a pristine house but I don't care!

auntevil · 11/05/2011 22:29

The only thing i can think of that might help is that on the allergy threads page there was a thread a month or so ago about someone who has a website that has designed some information to give to schools when your child starts about how you want your child's allergies dealt with - and the issues that need covering. I will try to find it and get back. if not someone like allergyuk - who have a helpline open mon-fri - would be able to offer advice about how to deal with the allergy side of things.
Dealing with little chunks of problems at a time might be easier than looking at life as a whole. If you can feel comfortable that N will come out each day without rashes or welts and in his own clothes, that may make you feel more comfortable with the setting. It will also make you feel that they are listening to you and taking things on board.
As far as the domestic goddess malarkey goes, please go over to the SN pages and you will find that there are witty, clever and resourceful parents - but many would not make it onto the most organised homes list Grin - me included.
As far as the medicine cupboard - i mean wall - goes, you're American - i would expect nothing less Grin I have several friends that grew up in the US and they are shocked at how little i keep. But i grew up with an NHS that says if i need medicine for my child i go to the GP, get a script and get it free. Why would i need to stock up? It's just a culture thing on the systems that all of us are brought up on.
Off to try to find the allergy link, but please come over to the SN pages - warm welcome awaits.

auntevil · 11/05/2011 22:41

www.foodallergymums.com/index.cfm?fa=contentGeneric.glvmhtaexkmtakmq This was the link and the site i was thinking of. I'm a bit of a numpty when it comes to converting links, so i hope it works Confused

eandz · 11/05/2011 23:23

thank you ladies. :) your words really mean the world to me. First things first thought I thought I was already posting on the sn pages? Aren't I?

I think all of you are wonderful, I've been in and out of sn:children's pages for a bit now. i like reading the pages, it's comforting and informative.

thank you girls for understanding my messy home and my crazy medicine wall--it makes me feel less crazy and more like 'one of those moms'.

I don't think this therapist is working, to avoid soo much of the inane and useless conversations I usually show her through my sketch pads/let her read drafts of a book i've been writing. It's ridiculous how I glaze over to just hope she goes away. I'm not paying for her, she works for the council.

I think whatever I'm feeling doesn't have much to do with N's possible autism since it's who he has been since I've known him. I'm okay with who he is, I'm proud he's mine. I'm just vary of all the bullshit I know I'm about to encounter from people who are supposed to know better; friends/relatives/support staff at the nursery/gps/health visitors. My own parents/inlaws. Will my ds be discounted by relatives just because he's not their ideal?

How many stupid remedies will I be asked to try? We've been gluten free for a year almost--and I don't see a difference really, should I put him back on to see if it's doing anything? (you see, I'm too afraid to even try getting off it!) What am I going to fall for next? Will I throw money at some ghost whisperer?

It's like being a size 20 and being forced to try on every size 4 dress in the world. It's uncomfortable and unnecessary but the worst part of it is, everyone around me seems to have a solution. I can just see my mother covering me in vaseline and finding lots of elastic. i'm sure you guys understand.

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