Me and my girl and boy, raising awareness and acceptance of autism

I had a rather awful meeting with D’s OT assistant on Tuesday. It was meant to be with the OT herself but she phoned in sick five minutes after (yes, after) the meeting had been due to start.

Before I start, obviously this is only our experience. There are some wonderful, empathetic OTs helping special needs children and their families, ours – I would hope – is in the minority.

Our meeting was one that had been due to take place in July 2012 and the report we discussed was one that was written in July (following a meeting in June) but we only received in December 2012. This followed discussions at D’s statement review querying where the report was. So, we hadn’t received it, nor had school (you can draw your own conclusions from that).

I was apprehensive about this meeting prior to it because at the June meeting, the OT’s first words to me were “if you do not let her walk, we will not be helping her”. Let? And it was not said in a “how can we help D?” way, it was demanding and “it’s my way or the highway”. She did not take into account D’s severe anxieties and when I said that she does walk when relaxed and comfortable but when anxieties take over, the buggy is a safe place, OT suggested that D has a “safe hat” instead. I said I would consider it in the future.

Anyway, the report came out (eventually). Very critical. The insinuation was that I force her to use the buggy, that she has no anxieties in school so why should she have outdoors? That there is “no reason noted to use buggy to and from school”.

I went into the meeting on Tuesday feeling strong and confident that I was going to voice our concerns, primarily that:

The buggy is used because of D’s severe stranger anxieties and the fact I don’t drive. If we didn’t have a buggy, I would not get anywhere.

If I forced D to walk – remembering we have to go to T’s school first – she would be bolting everywhere. She cannot tolerate strangers in front/behind/alongside her. Not an ideal scenario walking towards a busy mainstream school. Yes, she does get stared at, but there would be far more if she was bolting across the road.

When D bolts, it’s sudden and fast. I only just prevented her from bolting in front of a bus once, probably one of the most scary moments ever. Thankfully the bus was slowing down coming up to a roundabout.

So, we started going through the report, but the feedback we were constantly getting was “she’s fine in school, she walks about, there’s no problem”.

And then the questions started:

Where did the buggy come from?
Your paediatric doctor referred you to the Wheelchair clinic?
Who was this, when was this, where was she based?
Do you access extra-curricular activities for D? What? When?

The inference being over-protective mum.

I started saying that my priority is to keep D safe. Of course I’d like nothing more than D to be a girl who happily skips home alongside me, not worried about her anxieties, an NT child…but the tears started, because I wasn’t being listened to and it was frustrating, very frustrating.

The additional things I’d wanted to say:

People who bring their children to school by car and bus aren’t criticised.

I see other parents at the weekend, with their autistic children in SN buggies, I doubt – because they are not seen using one – they are criticised.

We get to a set point before arriving in the school grounds that D knows she gets out to walk and similarly going home. Of course if she wants to walk further she can (I don’t force her) but as I’m constantly risk-assessing I will ask her to walk holding my hand/arm.

So, Hubbie and I left the meeting feeling like we’d got no further really and that once again, because you can’t see autism or related anxieties, they’re not being accounted for.

And this is a statemented child we’re talking about.

We have another meeting in two weeks. I’m formally documenting my concerns before then but I really can’t see the next one going any better.

But I’m going to try and go in with an open mind…and not cry!

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Comments on: "THAT meeting and not being understood…" (7)

  1. Sorry to hear this. Like you I don’t want to criticise all OTs as I’m sure there are some brilliant ones out there but we had difficulties with an OT sensory assessment for my son. A clinical psychologist recommended that my son be assessed and so we duly attended an assessment but it was an awful experience. They showed no understanding of autism and anxiety and whenever I expressed concern about my son’s walking and difficulties with exercise they threw it back onto me and my parenting. Months later we received a report but frankly it wasn’t a lot of use as it didn’t really get to the core of his difficulties and what to do about them. We’ve never used a buggy (I ran after him all the time because I could never get him in one) but there were also the times when he refused to walk at all and would just lie down. Those days were incredibly hard but now that he is older he doesn’t run off so much and he is starting to walk a bit more. We still have to keep an eye on him though and encourage him to do things but ever so slowly he is making tiny progress.

    I understand the frustration of all what you’ve gone through. Ive lost count of the number of times that people have just not understood the extent of my son’s ASD and anxiety. Because he appears normal they assume I’m at fault. There is not much I can suggest except for documenting everything (as you say) and challenging these people with your knowledge of your daughter and what is best for her. In the end of the day we are the experts on our children, not them. all the best. Deb xx

    • Thanks Deb, it’s so frustrating isn’t it when those you assume can help, don’t. We’ve now formally written documenting our concerns and suggesting that we (parents and OT) agree to differ on the buggy issue.
      At the end of the day, D’s safety is my priority and I’m not jeopardising that for anyone.
      Be interesting to see if there is any follow-up. Xx

  2. Supper big hugs. I don’t want to criticize your help too much. Mostly cause it’s often all we got. A school, a SLP, a OT or SI OT. We are not given much help and often the professionals base all on that one bit of text they read or on the group of ASD children they have worked with in the past. It can be hard to see what they see. She may see it as D isn’t getting an opertunity to walk and not D would be disorientated by the walk. I once had a hard time with a few well meaning teachers in this regard. Often teachers and therapist may not know what little things we do to get a great learning day. To reduce the meltdowns or gain co-operation. A OT that is familiar with sensory intergration might notice that on a long travel route a child with less ability to process sensory would have many challenges. Signs of this would be bolting into traffic. Screaming while covering ears. Anger over the natural elements. Refusing to walk or visible confusion. All of it scary. This can be confusing for many because some can say. It was raining at the end of recess and the child was unfazed by it all. The child still played in the sand box or was using the slide just fine. But that doesn’t mean that the child would be fine walking on a busy road with cars honking, tired from the days activity, and rain coming down. Oh and now there is no other sensory friendly activity that the child can use as a distraction to make the unpleasant sensory seem less unpleasant.
    I guess I can see what they want to see. They may want to see D living with out any of her needs or challenges. Wouldn’t we all want to see our kids with out any needs or challenges. A luxury so many take for granted. The ability to process the whole world and never get tired, scared or confused by it. The good news for all is if we are given the understanding needed there’s less of the tired, scared and yes it can be processed better. The bad news is you have to give the respect to the needs of the child to gain it.
    I think when you use your buggy you are trying your best to do this. Give D the respect she needs. Your giving her her transition time. Her need to process the bigger transitions. Over time the school and you will see big changes with small transition periods. They may have seen some already. It’s too easy to push too far when we see progress in a child because we want to see more. It’s far too hard to allow a child to progress slowly. Keep respecting Ds needs the way you have. Keep tring to expose her to things the way you have. Continue not to be afraid to let her grow at her own pace. She will love you more for it. Because you and hubby respect her needs and let her just be she will love you and respect you for it. This is what makes you fab my dear. Truely fab! You’ve not done her wrong girl. Oh you’ve been doing it all right. I bet she has made great progress at school all because you kept her in good spirit on the way there. Much love to you all. Super big hugs!

    • Thank you ((hugs)) back. I have to consider my girl’s safety and well-being during all this. And whilst they are doing truly wonderful things at school for those with physical difficulties, I think they have come as far as they can with D.
      I’m hoping my letter will have some impact.

  3. Am so disgusted by the lack of respect you have been shown as her parents, and her experts. D has a statement, these are not given out easily I understand, and she has any number of issues, both from a safety and a sensory pov that need taking into consideration, which is what you are doing,

    My girl is very similar and we have a very short walk to school which is often done in the car to prevent her legging it or refusing to move another step. She won’t go in the buggy “cos they’ll laugh at me Mummy”. However, if I take her food shopping she HAS to sit full length in the shallow trolley as she can’t cope with other people being too close, and in any other town but our local small one she is in her buggy. Sometimes she will jump out and run about (she loves ELC so much she overcomes the strangers for a few minutes to check out the new toys) but she just cannot cope – simple as. Most of the time in crowded shops like department stores she pulls a blanket over her head, like D does with her monkey. If I took the buggy away she would bolt (done if far too often) and be at risk. How can these people not understand something so basic?

    I wish I could share my amazing OT with you Jeannette – she is so helpful and understanding, and keeps ringing up the school, or me, to check how M is getting on and whether we need additional help. We have so many strategies in place to reduce anxiety and give M sensory feedback, we are truly blessed. You know loads about what you’re doing already, but I’ll say again if you’re ever stuck do ask me and I’ll try and get an answer for you from someone who will listen.

    And maybe at your next meeting you should leave a long typed list of all your concerns about the last one! With a cc to the boss?

    Don’t doubt yourself ever – you are a FAB mum. xx

    • Thank you Karen ((squishy hugs)), I’m hoping the official letter will put an end to it. I didn’t mention it in the post but one of D’s IEP involves “walking all the way to school”.
      I would love to share your OT too xx

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