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OT - Playing the waiting game

RoseandJoan

Veteran

I'm sorry if this post comes across as rambles or completely incoherent. Teah my eldest daughter who is three and a half years has been showing several 'red flag' behaviours which could be indicative of Autism Spectrum Disorder. Ben and I already had our suspicions but when her primary playleader at nursery also voiced her concerns we realised we had to act.

Since then I have become increasingly frustrated and disillusioned, I just can't (despite much effort) get things progressing. I first tried to contact Teah's health visitor (off sick) so made an appointment with her replacement (cancelled because she was off sick) I then made an appointment with my family doctor who referred Teah to the Early Development Clinic at the hospital (progress) but four weeks after my appointment with the family doctor I contacted the clinic who surprisingly knew nothing about Teah (arranged for original referral letter to be faxed).

In the meantime Teah's appointment with the podiatrist for her tip toe walking, in itself a red flag for autism, was cancelled (you guessed it off sick) and her playgroup assessment arranged by her fab playleader was delayed (I'm sure you can guess).

I phoned again today and the clinic has now accepted Teah as a patient (progress) but they can give no idea of a time frame and it does not matter how much I rant or write I'm unable to change this. I am tearing my hair out with the frustration and the feeling of helplessness. Teah is my pride and joy and always will be but I feel I need to gain some control over this absurd situation.

The thing that really irks me is the handbook we were given about ASD states 'If a health professional is considering referring your child for an assessment, they should discuss this with you and organise support for you and your child while you wait to go and see the specialists.' and the sum total of our support so far...1 phone call in eight weeks.

I'm sorry I don't know what I hope to achieve by posting this but I know you kind and strong ladies will watch my back for me. If you have any advice or suggestions for getting through this waiting game I would really appreciate it.

General

45 replies

Latest reply was from catgirl

Louise

Veteran

You are a wonderful parent to accept she may have problems I've come into contact with many parents who refuse to acknowledge their child may need help. All I can suggest is to keep making a nuisance of yourself and keep ringing. Sometimes professionals are non too keen on intervening too early in case it's a tempory glitch in the child's behaviour and once they have a diagnosis it's difficult to get rid of x

April

Veteran

What a hard situation, Julie. In the U.S., your school district would be responsible for seeking out children with any sort of disability, even if they weren't school-age yet.

As someone who occasionally has to give my professional opinion about whether a student has an autism spectrum disorder, I really sympathize with how difficult it is for parents. You're way out in front by being aware of this while she's still quite young, since the earlier you investigate, the earlier you can start any therapies she might need.

I realize we're under completely different healthcare systems, but I would suggest being highly persistent and noisy if necessary. May help move things along where patience and good manners don't help.

Also, you might try to connect with a parents' support group. Someone there may be able to help you navigate the system, and might even be willing to act as an advocate for you. Parents who've been in the same situation are often highly knowledgeable about services and the law.

Please keep us posted on your progress. Thinking of you during this stressful time.

RoseandJoan

Veteran

Thank you Louise and April, your kindness is moving. I will take on board your suggestion to be a big noise.

Laura

(website)

Veteran

Oh Julie, how frustrating. First of all, you are doing the absolute right thing by listening to yourself and your own concerns about dear Teah and not brushing them under the carpet, especially since they were echoed by a teacher you trust. So kudos to you and Ben for that. Second, this is a time when you are called to be an advocate for your child. So pester away. I would be as loud and noisy and obnoxiously persistent as possible until someone heard me, because after all, you are the voice for your child, who is too young to have a voice of her own.

Debbie

Veteran

Having a child with cerebal palsy I've played this waiting game many times. I do not know what your health system is like so I'm not sure how to advise you. You have made the first step. You are seeking help.
Here I'm sorry to say you have to make a nuisance of yourself. Call your family doctor and ask if his office knows of any support groups for parents. It is very hard to walk into the first meeting but for me it was one of the best things I ever did. People who have been through the process sometimes know how to speed things along. If there are no support groups ask if there are any parent advocates. Sometimes it just help having someone on your side in advocating for Teah.
Pleaes PM me if I can do anything especially listen. You and your family will be in my thoughts. Extra hugs to you and Teah.

Debbie

Veteran

April we were posting at the same time.

Freckles

Veteran

Big cyberhugs.

I would also suggest a parental support group. Other parents may give you a leg up on a good doc or support in some other way.

My son has an ld and I remember how difficult it was playing the waiting game and listening to all the different ideas.

It depends on the severity of the condition of course but sometimes they try and label your child too early without letting them grow. As a parent you tend to know the whole child better than someone who might be only looking at one small part.

It might be wise to make another appt with your family doc to get some advice and also it may be important for you to see him re dealing with all the frustrations you are facing.

Remember to take a break and breath. Best of luck!

Sally

Veteran

You are in a very difficult situation to be in. I think the advice you have got so far has been great...other parents can be a great resource....have you tried an online support group or forum?

RoseandJoan

Veteran

Thank you so much for your understanding, this really is a special forum.

Michelle

(website)

Veteran

Julie, I have no wisdom to offer beyond what's already been said, but would like to send hugs, sympathy and support. I'm absolutely here if you need a listening ear.

Katiepea

(website)

Veteran

Julie. As a fellow mum of young children, I am feeling for you and Ben more than you can imagine.

The only couple of things I want to add is that if anybody you know has a child with autism spectrum disorder (even if they are an acquaintance), you get in contact with them. Find out their story - who they used for a diagnosis and would they recommend him/her; did they have to travel?; how much did it cost (so you can save and budget); how long did it take to get a diagnosis and a treatment plan in place; do they have any advice for you that you can implement immediately that may help (for instance - would it be worth starting speech therapy or doing some physical therapy/exercises now, rather than waiting).

Secondly, and in someways this is more important, if somebody hasn't suggested it and you haven't already, I would strongly *urge* you to keep a paper diary and note down every single piece of communication you have with every single person.

Note down the date, the time, who you spoke to. Note briefly what you asked, what they said, and the time frame they gave you. I would go back now and note all that you've said on here into the book. When you talk to a person on the phone, ask them directly for their name and tell them that you are recording this information.

If you have an appointment, take the book with you and note down what the person says. Ask questions (you could even have them pre-written into the book) and take note of the answers.

I saw my mother do this during her illness - trust me, it makes a difference if people know that you are going to hold them accountable! Seriously. She'd say to the specialist - "but you said on the 29th that you are going to do this - why are you now saying that?" and they'd say "Oh yes, oops - slipped my mind..." - you would be amazed how often that happened.

Keeping a record will also help you keep your mind clear when you finally do start getting some answers (probably all at once!) and it all becomes a jumble. When we are stressed and bombarded with inforatmion, it can be very easy to forget facts.

Remember, if they fob you off you get grumpy and tell them that you are going to call them every single day until they give you what you need and that you will not stop until you get answers! Please imagine every single person on here standing there right with you, backing you 100%. You are Teah's advocate. If you don't stand up for her, then who will?

Finally, it's ok sometimes to not feel brave. To feel sad; to cry big, blobby tears and to just feel like however you do. It's ok. For what it counts, I believe with you being the mother you are and the father Ben is, that Teah will be ok too - no matter what.

Wrapping my arms around you in a big cyber hug.

Kx

Polly (thunalata)

Veteran

Oh Julie, I am just so sorry you're going through this, and you are all in my thoughts.

Lynne

Veteran

Sending hugs, Julie. My neighbour has been through this process, and come out the other side, and her little guy is doing brilliantly with all the right support. He is a very 'high level functioning autism' (I hope I am using the right terminology), and i'm sure his life is much better now that we're all on the same page as him.

You need support through all this; you've done the right thing voicing your frustrations here, and do make sure you follow the advice above and make contact with people who can help YOU as well as your darling daughter. My neighbour went to counselling for a short while when she was going through all this, and it did help her a lot. Sending hugs to you all, Lynne xo

celia

Veteran

Julie as a mother of a 3 year old I begin to understand the agony you must be going trough.
I have no advice in terms of healthcare and special needs for you child but as a mother I just want to emphasise that you (and your husband) have been very brave about acknoleging that this situation exists and are taking the steps necessary to ensure that your child is going to grow up healthy and happy.This being said you are in the best position to know your child and search the best for her.

Yes, do annoy everyone you feel you should be calling so that she goes to the doctor as soon as possible so that the situation can easily be delt with, but please try to tell yourself that what seems like an eternity of waiting for you is not that much in your child development.At this age they still have an amazing capacity to bounce back from almost anything that happens to them.

I guess what I mean is worry, fight for her, but do not dispair.

Hugs for all of you. Please let us know when you get an appointment.

chewyspaghetti

Veteran

(((Julie)))
I don't know if you know this, but my 15 year old son is Autistic.
I know you're frustrated, but don't let that get to you. You are doing the right things, and getting a diagnosis may take some time. Just keep being that squeaky wheel and not taking no for an answer. In the meantime you need to educate yourself. Do as much research as you can stand, join support networks and a local group if you can find one, and begin to work with your daughter yourself. The earlier a child with ASD gets treatment- the better for them. You are probably going to need to adjust your ideas about parenting her and learn different techniques that will work better for her. Doing that will make life so much better for both of you. My son was diagnosed at the age of 3 and we tried to do as much therapy of all different kinds as we could. I watched what the therapists were doing, and did the same things with him in my own interactions with him. I realized that therapy is just pushing them past their comfort zone a little all of the time, so I found a million little ways to do that every day (without it getting to a frustrating level). Of course, he still has issues- but for the most part he is doing really well. So much so, that even health care professionals are surprised when they hear his diagnosis. Feel free to PM me anytime if I can be of help.
What a lucky girl Teah is to have a great mom like you who will give her everything that she needs.

anne

Veteran

Big Hugs from me too Julie. You have received some great advice in this thread so I won't replicate, but wondered if you had read the book A friend like Henry, by Nuala Gardner, who also lives in scotland and has two children with Autism. She really had to fight to get treatment for them - it was a very inspiring read and may have some leads for you.

Aunty

Veteran

Julie my heart goes out to you.
I work for a charity that has residential homes and a day service for adults with learning disabilities ( in my opinion the most beautiful of people ) All I can tell you is you have to go to war. You fight every inch of the way untill you get what Teah needs. Keep a log of dates and times of phone calls, also who you spoke to with a short note of the conversation. I am afraid it is a fact that the person that screams loadest is the one that is heard!
Keep us up to date wont you, and don't let yourself get over stressed xxxxx

Patty

Veteran

Tons of good advice for you here Julie!
Particularly about the taking notes part---once you get going in the therapies and programs you are thrust into the world of anachronisms, file numbers, codes and short form names that it's real easy to get confused!! And these reps and therapists use them freely like you know what the heck they are talking about but you are not of their world so get the that info straight from them and have them explained!!!!!!!!!!!!!! I have a hard of hearing, basically deaf son who wears hearing aids and I found this (as well as the stalemates) most frustrating, confusing and overwhelming. I was brought to tears so many times feeling like a fool thinking I should just know it coz it seems like common info.
Keep poking them Julie--autism does best when discovered early and continue insisting she be seen sooner than later--you're doing the great job right now checking up on appointments!
My son had his first therapy session in house on his first birthday then graduated out of the program when he hit Junior Kindergarden but there were no junior school programs for him to move into and he still had limited vocabulary and I'm no pro at therapies other than continuing what I knew so I started shaking some trees and found him continued therapy but it didn't exist until I got the right people involved so keep calling and find yourself a parenting group in your county/town who can tell you local people/groups to call.
All the best Julie and Ben--an involved parent is the child's best help!!

Patty

Veteran

Oh and check out Carly's voice--a beautiful autistic girl's site--she does not talk but has learned to write her thoughts on the computer--a real break thru in giving none speaking autistics a voice!!!!

http://carlysvoice.com/

Angie

(website)

Fashion Stylist

My heart goes out to you and Teah, Julie. I can't top the killer wisdom that's been shared here, but know that I am thinking of you and wish you the very best. Teah is a very lucky little girl to have a devoted Mummy like you. ((HUGS)).

Good luck and I'm sending you positive energy all the time.

Queen Mum

Veteran

Julie~ I"m sorry for your frustration. I do hope that you get some results and attention soon.

mrseccentric

(website)

Veteran

Hey chewyspaghetti, my nephew is 14 and has autism - ah, the thrills of puberty

RoseandJoan - excellent advice here. i've had various severe chronic health troubles for the past 30+ years, so i've had to deal with all types of health pros and systems, and i can vouch for the wisdom in these comments. research, taking notes, writing down your questions before an appt. and checking them off as they are answered, support groups on and offline, being persistent - all worth their weight in gold.

i have found that being persistent, calm, and showing that you are taking notes and following up is generally more effective than getting loud and emotional (tho sometimes you just have to throw a fit in public). docs and nurses are trained to be calm and left-brained and take notes, so that when you behave the same way they are more apt to see you as an equal and take you seriously. and they are people, too - the emotions of a person can overwhelm what the person is saying, so they just can figure out that you're upset but not much else. however, just try different tactics if you're not getting results and see what works.

one thing that hasn't been mentioned yet. some people find it helpful to audio or video tape a visit, especially something like a trip to a specialist who you will only be able to see once or twice, or when a therapist is teaching you techniques to use at home with your daughter. if you want to do this, just ask. many professionals want to help people get the most out of their time together.

and i completely understand your frustration in trying to get a diagnosis. at the same time, if it takes longer to get a diagnosis, part of that could be because your daughter is high functioning, which is a good thing! here in the U.S. kids aren't eligible for certain therapies to be paid for unless they get certain diagnoses, which is the downside....i don't know how it works where you are. if you are able to document that your daughter is having trouble walking or talking, for example, you may be able to get her help with those specific areas without a diagnosis. my nephew is 14, he wasn't diagnosed with autism until a couple of years ago (he'd had various labels, mostly developmentally delayed). but he got help anyways.

the last couple of years (unrelated to diagnosis) he's been in a different school and he has learned so incredibly much!!! the last year every time i've seen him he has STARTED conversations with me several times! he NEVER started a conversation with me before then, tho he would talk to me if i engaged him. so even if little Teah doesn't get a lot of intervention right now, there are plenty of possibilities for her to blossom as she grows. that's the thing with kids, they're always growing and changing, and it's hard to wait to see what happens!

hang in there and keep fighting - it's a scandal the way people have to fight to get help for their kids these days, but you can do it. take care, steph

rae

(website)

Veteran

I'm sorry to have no experience with this condition, but I do have a very close friend with bipolar disorder, and even in our healthcare system, it was very difficult to make anyone sit up and take notice and provide the help he needed. His family succeeded by doing exactly the things you are doing: being persistent and of course knowledgeable about your daughter's rights to a certain level of care. Big hugs to you; I hope all these sickly people get well soon so they can attend to Teah!

taylor

Veteran

Julie, I can't offer anything new...just support and the very best for you and precious little Teah!
And know that you are doing eveything possible for her!

Anonymous

Julie, I sorry that you have to deal with all this red tape to get help for Teah. She's so fortunate to have you as a mom. The past couple of years I've had a religion class of 9-13 year olds that I see 2 hours a week. Out of 9 children, 3 have been diagnosed with some form of autism and another is still in the process. You may have to be patient, although this is a different health system. Only the most severe was diagnosed as a young child. Two others, with very involved parents and much travel, were only diagnosed this past year at age 12 and 13. The last is 13 now and still looking for an answer.
The other thing to educate yourself about is diet. Here most doctors don't seem to be helpful in this area but the most involved moms have found that a strict diet has been a great help. I don't know the details but am pretty sure that it is gluten free, sugar free and additive free. They bring their special food whenever we celebrate a religious feast with a "feast". This may be something to ask at support groups and start on your own now as well as removing all unnecessary stimuli that may cause anxiety.
On the other hand, these children have some great strengths. Be sure to find and watch the Academy Award winner Temple Grandin remembering that this woman grew up at a time that autistic children were institionalized and women in general didn't go to vet school.
http://www.hbo.com/movies/temp.....ailer.html

Debora

Veteran

Julie, I can't add anything to the excellent advice you've gotten above. Teah is very fortunate to have you for an advocate and I hope that you will get some answers soon. Hugs and all the best to you and your daughter.

Jonesy

Veteran

Such wonderful, sensible advice on this thread! Julie, it is horrible to have this little voice in your head nagging at you that something is not quite right with your child, then have to wait while everyone puts you off for several weeks! Horrible! Absolutely keep track of everything, hold everyone accountable, and remain steadfastly Calm Assertive. Know too that mental health/health diagnosis is not an exact science. What can appear to be one thing at one age could be something quite different later, dissipate completely (or possibly worsen). There is always interplay with biological predisposition, environment, and developmental stage, so it's quite complicated and changeable. On top of that the science of evaluation/diagnosis is always changing. Right now, there is big talk about altering the autism spectrum with the new edition of the DSM. They are discussing whether there is actually a spectrum, or several distinct categories, etc. I think "classic autism" is relatively straightforward to diagnose, but things get quite a bit murkier at the other end of the spectrum, with PDDNOS--Pervasive Developmental Disorder-Not Otherwise Specified, and Asperger's. My point is to educate yourself, go with your gut, and know that this is not an exact science. Good luck. We are all advocates for our children to a certain extent, but when something like this pops up, we have to become major advocates!

Sarah

This is such a crappy situation to be in, that's really the only word I can use to describe it. I just went to a class about a month ago about helping kids with dyslexia and there were 3 teachers there, myself and 2 other teachers that came with me from our school. The rest of the people in the class were parents who were frustrated with the help they were getting (which was basically nothing). I'm so sorry your'e having that experience with autism too.

I agree with the advice to just be noisy and make yourself known. They might think you're annoying, but at least you won't be forgotten about! Good luck!!

MNsara

Veteran

(((Julie))) You are a wonderful mom and you are Teah's biggest cheerleader!

You've gotten such sound advice and ideas here. Keep on those professionals to get the help!

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