You couldn't make this up....

This week had yet another road block put up in my eternal quest to get Older Son's speech and language report from Shrewsbury to Kingston. After finally getting a hold of someone in Shrewsbury last week to re-send the report to Kingston, I was DETERMINED to talk to a live person in Kingston this week to let them know that the new report had been sent, and to ask them to call me when it arrived. After calling and leaving a message twice, I finally talked to someone in Kingston. Here's how it went:

Me: Hello, this is _____, I'm calling about my son ________'s speech and language report that was sent down to you from Shr----

Kingston: Oh yes, Mrs _______, I've been meaning to call you, we did receive your son's report, but unfortunately it's been destroyed.

Me: ------Stunned Silence-------You're joking, right?

Kingston: No, we're terribly sorry, but it seems that his report was picked up by someone who was Shredder Happy and it got destroyed. I was going to call you to ask if you could send me the copy that you have?

Me:-----Stunned silence again----Someone got----shredder happy?

Kingston: Well, yes, but if you send the report to us we can pro-date it back to when it was originally sent, so you wouldn't have lost any time.

Me: I hope you can understand how disappointed I am in this, and how can you say that no time has been lost since you have now lost my son's report twice and a month has gone by?

Kingston: Well, you see, there is a four to six month waiting list to be seen for an initial visit, so we will just bump his report further, so now you only have-----

Me: Three to five months?

Kingston: yes. Do you have our fax number?


With the rain and the bank holiday, I have not gotten this report sent, but it will be faxed tomorrow. Here is the edited version of the cover letter to the THIRD report to be sent to this Mickey Mouse outfit:



Ms.____________,

This fax should contain the speech and language therapy report done of my son _______ by _________ in Shrewsbury on July 7^th, 2011. On the second page she recorded that she had sent you a copy of this report on that day. I am disappointed that it has taken over a month for this report to reach you. Since we arrived in Worcester Park on July 11^th I have called the speech and language office on a weekly basis to gain information on the whereabouts of my son’s report. I was first told that the report could not be found, and that I would be contacted when it was found. After a week of waiting, I called your office again to be told that the report was not found and that I would have to send it to you again. I have called every week since to find out if you received the report, only to leave my message and phone number on an answering machine that never gets returned. Today I finally reached you, only to hear you say in a casual manner that someone got “shredder happy” (direct quote) with my son’s report.

Ms ________, I do not hold you in any way responsible for the fact that____ will be starting reception in a few weeks time with a language delay that is at least two years behind that of his classmates without any speech therapy help. However, I do hope that my son’s reports will be treated in a more professional manner in the future. My son will not be able to access and learn the curriculum to his full potential unless he gets support. Since he needs help as soon as possible, I would also like you to instigate and activate my son _______’s speech therapy into your clinic’s caseload now, as his first assessment has already been completed up in Shrewsbury.

Please contact me by the above number as soon as you have received this fax, and to inform me if ______ can be instigated and activated into your caseload now.

Thank you,

So, there you go. It's good to ask people who are in the know, like speech therapists and special education specialists, for key terms that will shake things up: like "instigate and activate into your caseload". It was suggested that I also write that I am studying the 2010 Special Education Act that has just been introduced into the UK in June. I didn't want to come across as too heavy handed, but I AM going to be reading up on the law now, because it seems to get anything done, you have to play hardball.....I guess the UK version of that term would be to say I need to start playing Rounders, but it just doesn't sound the same.

Further dealings with the NHS

I didn't have any spare time last week to blog. Today I don't have any free time, either, but I am doing the lazy mommy thing and employing Mickey, Minnie, et al to babysit the boys for twenty minutes to vent some more.

Today I got some papers for Older Son that really pissed me off. I'll have to back up a little bit to explain everything, so please bear with me:

The reason we had gone up to Shrewsbury on the 9th was to visit with Older Son's pediatrician for the next visit on the docket. I knew that as soon as I told him we had moved, he was going to say he couldn't help us anymore, and that's exactly what he did. Two other specialists were in the room with him, and none of them seemed surprised that I was getting the run around from NHS as far as getting speech therapy for Older Son. It seems that the speech therapist's report had not reached him as well. Must be something wrong with the fax machine at the speech and language department in Shrewsbury.....or with the person running it....They ended up just giving me some advice on how to deal with the NHS that I've heard before, up to and including the old "make sure any requests are in writing" line. I remember doing that with the parents of my students in California when they needed help, although we weren't supposed to tell the parents that key piece of information. It seems to be an open secret in the health and education departments on both sides of the pond: imagine that scene from The Incredibles in the insurance office, "What I'm NOT going to tell you is to NOT take the PINK form and go to the SECOND FLOOR, and do NOT go to room 3A to file it THERE...." Except its more like, "What we're NOT going to tell you is that you need to MAIL a copy to the department that is NOT signature required, and DON'T under ANY CIRCUMSTANCES make sure that its DATED FOR CHRIST'S SAKE, and PLEASE DON'T EVER keep a copy for your own file...." So, I thought it was a rather large waste of time and money, but I also wanted to make sure that the pediatrician sent all of the files to the GP we will have here in Worcester Park, and since papers seem to have a life of their own here, I asked him to make a copy of EVERYTHING that was in the file he was holding on Older Son.

Well, I got that file today, and my worst suspicions about what diagnosis the pediatrician was angling  for were proven true: all those questions about whether Older Son needed to have routine, did he get upset with any change in routine....questions that I answered with no, and that he seems to be adapting very well to a major change in home and school, were put on file as that he does have trouble with change of any kind, and that I was agreeing with the pediatrician that Older Son should be investigated for possible ASD: Autism Spectrum Disorder. This is the first time that phrase has ever been associated with Older Son on file. I am planning on writing over this report in red ink every point that this doctor misrepresented me.  I shouldn't be surprised. Really, I shouldn't. Everyone has been telling me that Autism is the umbrella term used in the UK for every kind of learning disability. Still, it hurts.

I keep thinking of something my sister said to me about having a child with a disability: that even though you love your child, you also mourn for the child he might have been. Its times like this that I mourn the child who would be talking with me and having conversations. A child who I wouldn't worry about being picked on for not being able to communicate. A child others wouldn't be trying to label as autistic. I know that compared to many other parents I have nothing to complain about. Older Son is healthy and happy and will improve in time. He's been improving just this past month with one of his jumps in communication. I am grateful for everything I have. I just need to have a cry once in a while, and then, as one of my friends once said, put on my big-girl knickers and keep on fighting.

An interesting side note: I got a call today back from the speech therapist who did the report for Older Son in Shrewsbury! Will wonders never cease! I was also surprised to hear her offended tone when I said that her report never reached the Kingston speech and language department or the pediatrician....It wasn't like I was blaming HER, just her secretary.....so, she's going to ask that same inept paper pusher to re-send the report to Kingston via the fax number I gave her and in attention to the person I finally had gotten a hold of there two weeks ago. I then called Kingston, again, and left a message, again, telling them to expect this fax.
Hope springs eternal.

On trains and children in the UK

If it is at all possible. DON'T mix the two!
OK, OK, It isn't all that bad. I'm just recovering from a bad train experience from Shrewsbury to London this past Sunday.  We ended up sitting on the floor in the tiny floor area before the food cart of the train because there was no place for the stroller and almost all of the seats were reserved. This had not happened to me before: I had been lucky enough to get the handicapped space for the stroller on both legs of the journey, but this time there were not only strollers in that space, but I had to share the tiny floor space area I mentioned before with another mother and baby with stroller for half of the ride from Birmingham to London. Aside from it being a massive fire hazard, it was also embarrassing to have to inch the stroller over for people to get by to the food cart area and back. The only consolation I had was that I could see through the sliding doors to people sitting on the floor in the next train over. Its amazing what the British people will put up with. We all spent fifty pounds each for this luxury. So I am a little burnt from my latest experience with Virgin rail.

However, I haven't been able to avoid going on the train since I've been here, and I know that I'll be using it again since we won't have a car for quite a while, so I guess it's better to focus on the positive and give out some good advice.

1. If you can, reserve a seat even if you don't think you are going to need one. This would not have helped us much with Older Son, since because children can ride free you can't reserve a seat for them, but if you have only one baby its worth it.

2. Get to the train station at least 20 minutes early for the train. Sometimes that helps you get that coveted handicapped area to fit your stroller into. The train system is definitely NOT family friendly in that regard. For all but this last trip I was able to get a spot there. This time even though we arrived early at the Shrewsbury station, the spot was taken by a family who had gotten on the stop before. Forget about Birmingham. We had twenty minutes to get to the train and ten of that was taken up with getting there. We were lucky to get the crappy floor area.

3. Take your time getting a stroller off the train. That gap is the perfect sized space to trap the stroller's wheels and keep them stuck in there while your baby is hanging in space and your trapped behind the stroller and people are behind you and you're wondering if the train is going to start moving with the stroller trapped like that......wondering how I know this? Yep, happened to me and Younger Son. Luckily the people on the trains are usually friendly and helpful and I got help from some folks on the platform. I've also gotten help getting the stroller off the train by a good Samaritan pretty much every time.

4. Treat it like a plane ride. Lots of snacks and things for the little ones to do.

5. If you can keep your toddler in the stroller, do so. I've found that the best thing to do is just not take my Younger Son out for any reason other than a diaper change. If he knows that that's how it is, there's less crying to get out. Every mom that I've seen on the train who has taken her toddler out of the stroller for a cuddle or just to sit on her lap has ended up with a toddler running up and down the aisle and screaming bloody murder when he or she has to be put back.

6. If at all possible, don't travel on a Friday or Sunday afternoon/night. You'll avoid the weekend rushes.

It looks like I won't have to take a trip up north until around Christmas time. Maybe we'll splash out for the holidays and rent a car for the weekend? One can only hope.

If you want to make sure something's done right....

you'd better do it yourself as far as making sure documents get to their correct destination in the English NHS. Today was positive in many ways: Older Son suddenly discovered that the door to his bedroom was a rectangle, and on our walk to downtown had to point out every rectangle he saw. At one point he said, "Rectangles EVERYWHERE!" It was a great thing to be a part of. I also managed to be on the ball and professional about getting the last bits of information to the Sutton School Admissions to make sure that Older Son was well and truly in as far as the upcoming school year was concerned. I even typed-up a very professional cover letter to go with the information that detailed all enclosed information. ( The reason I am making a big deal out of this is that the longer anyone reads this blog, the more they will know how rarely I am ahead of the curve with getting things done in a timely and professional matter.) Anyhow, I walked downtown with the boys to fax the papers to Sutton and- 2 pounds fifty later- job done.  On the way home Older Son was saying goodbye to everything on our walk before we got home: "Goodbye tree, goodbye man, goodbye fence, goodbye car, goodbye bin...." I pointed out things he had missed, and Younger Son got into the act, shouting "Buh-bye-Buh-bye!" over and over. We got a few looks, but I could care less.

As a side note, I learned that I had been exposing my basic ignorance of English geography every time I complained to anyone about how our address says Surrey but we were sending our information about schools to Sutton.....it turns out that we are in the Borough of Sutton. One of my husband's friends pointed it out to me this weekend, and it's there in big letters on the notice we were sent about Older Son's school: Borough of Sutton. I have since learned that we are in Worcester Park, Sutton, Surrey, but its never put on the address like that because the post code covers the fact that we're in Sutton....those of you who are English and reading this post are probably thinking, "Well, duh..." but hopefully this will help the next American mom who may read this. England seems to be filled with different overlapping boroughs and counties, so you have to be careful to find out where exactly information needs to be sent to be effective.

Case in point: my ongoing struggle to get Older Son's NHS speech and language report from Shrewsbury; where it was done, to Kingston; where it needs to be for Older Son to continue getting help and possible speech therapy in Worcester Park. Like I said before about knowing where information needs to be, I would have had no idea that the NHS in Kingston, the next town over, covered children with speech and language difficulties here . This report was done a month ago, and it has yet to get to Kingston, even though I was reassured by the speech therapist that she had sent it to Kingston for me, and even states at the end of my copy of the report that she had sent it there. I had called Kingston's speech and therapy department last week to find out if any search had been done for the missing file, and was told that they had looked but no report for Older Son had been found. At this point I doubt they even bothered to move any papers around, but I'll play the game, and had asked for their fax number to have Shrewsbury send it again. It was just my luck that when I called the Shrewsbury office the speech therapist who had done the report was on holiday and they were moving office. I left a message for her, (see earlier blog about how futile that effort is) and of course have yet to hear back from them. Today I called Kingston, and after getting a message machine from the front desk for two hours, someone finally picked up the phone to send me through to the speech and language department to......wait for it, folks.....another message machine. So, I (sigh) yet again left another message on another machine to ask if maybe I could fax them MY copy of Older Son's speech report to finally get this ball rolling. We're going up to Shrewsbury tomorrow. I'll bring all the paperwork up there in case I finally manage to talk to a person and am certain that the fax wont end up in the circular file (something I learned from my teaching days: the circular file is the trash can).

We're going up to Shrewsbury to have another meeting with Older Son's pediatrician, who will look over the speech and hearing reports, and probably tell me that Older Son has autism, because I swear that's what he decided Older Son had the second I was stupid enough to say that he didn't make eye contact very well as a baby. He then started asking me if Older Son had to have a fixed schedule, if he got extremely upset if things changed, if he had to go to school a certain way every day...on and on, and I felt like screaming, NO. HE DOESN'T HAVE AUTISM. STOP TRYING TO PUT HIS PROBLEMS UNDER A NEAT HEADING AND DO YOUR JOB. But I didn't. I just told him calmly that, no, he doesn't have any trouble with changes, any more than any other child does, and that he adapted remarkably well to moving to another country and living in another house and going to another school. Still, I've had at least three people, one who works in the NHS no less, tell me to expect that title to be slapped on him, and that it may be the only way to get him the help he needs in a timely manner. Do I think that Older Son is Autistic? No. Do I think he has some sensory issues? Probably. But I want him to be assessed by a qualified professional, and it looks like that will take a while here. Well, its better than what was happening in the states: he was going to be in a regular kindergarten classroom this year with only a pull-out group speech therapy group twice a week. I know for a fact that would have done absolutely nothing for him. So, even though things are moving slowly, I need to remind myself that its better than the situation we left. Someone remind me of that fact when I report that I've gone ballistic on some bureaucratic lackey who loses my paperwork again.

Make new friends, but keep the old....

Those of you who went to Girl Scout camp know the rest. Still, the song goes through my head these days, with all of us missing our old friends and trying to make the first tenuous links to possible new ones.

I have an idea of how the connections with our old friends will turn out. I've moved from place to place and coast to coast in the U.S. enough times to know that some of the people we knew will still stay in contact and be a part of our lives, while others will devolve to only facebook friends who comment on pictures of our children and send the occasional email our way. I've been guilty of doing the same thing. Long-distance friendships are a difficult thing to keep up.

I'm experiencing something new with this move to England: old and new friends with children as part of the equation.  I haven't been very successful in explaining why old friends are gone to my older son. When we skype his old friend in the states, he inevitably gets depressed and asks why he can't have his friend here. He knew this friend since he was three months old. How am I supposed to find a replacement for a friend like that?

Making new friends is a whole other kettle of fish when kids are involved. Its tough enough for me, but for my older son there have been some heartbreaking moments. How does a four-year-old with a profound speech delay make new friends? Watching him try to communicate with other children in the park has been difficult to say the least. I get torn with keeping myself from stepping in and explaining to the other children (who don't really care and just stare at me blankly when I have tried)  that the reason he's just joined them out of the blue and is parroting their words back to them instead of answering their questions or even asking if he can play is because he can't speak well and that he just wants to play with them. Inevitably I end up watching as they run off to another part of the park and leave him behind. "Why, mommy? The People. Want back!" he tells me, and yet again I try to tell him that he will make new friends, but he has to be patient, and when school starts things will be better. I don't even want to think of how things at school could go wrong: playground bullying scenarios keep me up at night. I keep telling myself that it wont be too bad in kindergarten/reception, and he was friendly with the children in his preschool up in Shrewsbury. I have to keep hoping that he WILL meet some decent kids. But now even I am wondering when.

So, now that we have completed moving-in to our new place, I have become pro-active in finding new friends for my older son. We can't just wait a month for school to start, and we'll be living here for a year at least. It was time for me to try and make some contact with the other moms. I feel extremely self-conscious just going up to people and saying hi, but I have, and we have met two moms with boys my older son's age. Today I even went so far as to ask one of the moms for her phone number to arrange a play-date in the future, and knocked on another mom's door to arrange a play-date next week. It's about time I make some new friends as well here, and I know that at this stage in my life my friends will probably by the parents of my sons' friends. Thank goodness I only have to worry about my older son. My younger son is young enough to just be happy with us or any toddler that comes his way. Luckily there are quite a lot of toddlers around here, too. I figure that when my older son starts school, I'll have the time to make some forays into friendships for my younger son as well.

England and food

I haven't suffered too much from homesickness and its been almost five months, now. The one place where I feel the most homesick is the grocery store. I didn't expect to miss home while shopping for milk, but its a strange feeling to be looking for something that's common in the states and not seeing it anywhere. Its even stranger to realize that I won't be able to find it anywhere in the country. As far as I know, there are no specialty American stores around like there are for everyone else. I've asked friends for CARE packages, and so far I've gotten some Dunkin Donuts coffee, a large container of taco seasoning, and Girl Scout Thin Mint cookies.

Here are some things I have not found here, or its here, but not really what you would expect:

-proper apple sauce. There's only ultra-sweet table sauce with apples that's used with pork chops. No large jars of Mott's. We all miss that, and trying to make apple sauce in our small apartment would be slightly insane. Maybe when we live in that bucolic farmhouse of my English dreams....

-the Mexican food here is pretty bad. The only decent salsa I've found has been the tiny package in the fajita dinner box. That should give you a good idea of how bad it is. Forget about guacamole, and no sour cream here, either.

-so far I've found no decent pizza; frozen or takeaway.

-no Italian sausages, and I have yet to get used to English sausages. They just taste odd to me. The kids dont mind, though.

No goldfish crackers!

kid alert: gotta go and I'll finish this post later.

The NHS and Schools during summer break

It seems that England almost closes down during summer break. Maybe its because they have a shorter break ( Mid-July to Early September), or maybe its because the weather is so bad here that everybody is desperate to get out to some sunny place. Either way, I've come across some road blocks in getting things done for Older Son and the rest of the family because of it. Summer break seems to be the time for changes to be done in offices as well. Today I'll be dropping off our applications for a new GP at the only local doctor's office, and I've been informed by them that we wont be actually accepted into the practice for a month because they're transferring everything to a new computer system. I've been trying to get a hold of Older Son's speech therapist who did his review for the NHS, and the office up in Shrewsbury is moving or something and she wasn't there anyway, so I was only able to leave a message for her.....and I'm learning that leaving a message at any office around here is like writing it on a postcard and mailing it to someone who cares. I've started writing down in my notebook when I've left messages and when I should call again if I haven't heard back in a few days so that weeks don't go by without any reply.

Dealing with the NHS and the schools is beginning to remind me of that Monty Python sketch about the man who goes into the cheese shop for cheese: John Cleese keeps asking Michael Palin if he has different types of cheeses and is told again and again that there is none. "Do you have any Emmenthaler?" "Nope", "any Cheddar?" "Yes", "Then bring on the Cheddar!" "Oh, sorry, sir, the cat's just eaten it."   I hope that it wont be like that, but everyone who has dealt with the schools or NHS has told me to not have too high expectations. I've been told that I need to be rude and a squeeky wheel, and to not worry about coming across as THAT Mom, because any perceived rudeness will be attributed to me being an American. Well, at least I have that going for me.

Kids' clothes

There's no cheap kids' clothing store like Old Navy or The Children's Place over here. I miss that. Instead, there's the charity shops for good second-hand clothes, and for new clothes there's the grocery stores Sainsbury's and Tesco. I found it a little strange that they had a clothing section next to the fruit aisle, but the TU clothing line is ok. They also have a school clothes section now that its the summer holidays. I wonder how it will be dressing Older Son in his grey pants, white polo t-shirt, and purple sweatshirt with the school logo every day of the school year. As usual, there's more of a selection in the girl clothes, but that's how it is all over. I still have to get the black shoes and his gym kit. I wonder how the teachers manage to get thirty five-year-olds changed out of their clothes and in shorts and t-shirt without it devolving into total chaos and taking up the entire gym period, but I guess they're experienced at this sort of thing.

Things I find strange about England

I hope to make this a continuing post, as I will have more things to add the longer I am here....so, here goes:

1. why are the refrigerators so small? What's up with that? I know that America has become a punchline for everything being super-sized, but really, why have such a small fridge? It means I have to go to the grocery store more often to get the smaller-sized portions of things to fit in my smaller fridge.

2. Why do we have to pay for cable t.v., and THEN have to pay for the privilege of actually possessing a t.v. and watching BBC 1, 2, 3 and 4, which don't come free anymore after they've gone digital, anyway?

3. The newscasters all have a segment in the morning where they show everyone the cover stories on the morning newspapers and talk about them. Am I the only person who finds this strange? Watching people on t.v. news reading the news from the papers? Don't they already know the news? Why are they transcribing it from another news source?

4. There's not just one goodwill store here like in the states. In all of the downtowns I've visited here there are at least five charity shops covering different charities like the heart foundation or cancer research or even taking care of stray cats. You don't drop off your old clothes and books anonymously at drop-off bins like back home, you bring them directly to the shop and give them to the folks who work there.

5. People walk around here a LOT more than back in the states. I've gotten used to going out with shopping bags and hauling groceries and stuff back home just like everyone else.....makes me feel like I'm back in college again.

6. The whole changing "-or" to "-our" thing; like flavour, savour, colour....every time I see these words on packaging or any kind of print here it hits me right in my grammar teacher's heart. I keep thinking that if they're spelled that way, then why don't they rhyme with devour, hour, sour?

7. Cricket.

Three weeks in.....

Hello everyone,
Well, its not actually three weeks in the UK. We've been here since March 2011 living with my mother-in-law up in Shrewsbury, but its now three weeks since we've all moved into our apartment here in Worcester Park. I've decided to write this blog to help any parents, especially parents of children with learning disabilities, who decide like we did to do this crazy move across the ocean to start our lives all over again. Maybe some of you will be able to give me some advice, since I am quite the fish out of water here sometimes.

Today I'm trying to yet again get my son's speech therapy report to the people at the speech and language department of the Kingston district. It was supposed to have been faxed there by the speech therapist up in Shrewsbury almost a month ago, but after finally getting a hold of them by phone and being told that they did not have his report and they would get back to me, then not hearing from them for a week and having to call again to have them say that they really don't have it, I am now going to try and call the therapist up in Shrewsbury to ask her to send it again. If she doesn't have it, then I'm going to have to find a way to get a copy of the report I have to them......difficult to do without a car and with two children. I have found that the bureaucracy in England is particularly difficult and absent-minded; especially when it comes to schools and the NHS. This blog will be full of rants in the future if what I have experienced so far is any indication. (I will relate the frustrating first meeting with older son's new school in another blog, as I am on borrowed nap time).

I'd like to end each blog with some likes and dislikes of England, so here goes:
LIKES:
-Dark Chocolate Digestive Biscuits
-The fact that the main street (high street) here has a vegetable stand (fruiterers) and a butcher shop....something you would not see in the US anymore. The people at the fruiterers already know older son's name as we are in there almost every day and he loves all fruits and veggies.....also probably because I have to watch that he doesn't just "take" something and eat it as we leave.
-there is a very good train and bus system here, and we don't feel the loss of our car as much as I thought we would. I'm getting a lot of walking done, which I like, especially since its a pleasant time to spend with the boys.
-there is wild blackberries and lavender growing everywhere around here, which is strange to have so much wilderness around when we are about a half an hour away from London by train. England seems to be much closer to the farm than the US is.