The visit

To help motivate my daughter back to school, the school agreed for a teaching assistant to visit us at home.  We all felt that having someone familiar from school would bridge the gap between home and school and help ease my daughter’s worries.  Originally I had intended to sit with my daughter but in the end I decided it was better that I kept my distance to encourage my daughter to talk to the TA.

Initially though my daughter refused to leave the computer game she was playing on.  The TA however was very good and started to communicate with her through her special interest and eventually my daughter started to respond.  Unfortunately the TA spoke too much which is a real problem for my daughter as she cannot cope with excessive talking and will often switch off.  To many people this may appear as if she is not listening or is being rude but the fact is my daughter has real problems with understanding spoken language.  This is what happened yesterday.  She was zoning out and the TA kept asking her if she was listening.  It was frustrating; I just wanted to go into the room and tell the TA to give her time to process what she was saying.  However I held back; this was a conversation between the TA and my daughter and whereever I can I want these people to try and see my daughter’s difficulties though I have now come to realise I am facing huge obstacles.

The school have insufficient understanding of the autism spectrum, particularly those who are high functioning and mask their symptoms during the school day.  They also have zilch idea about how girls with high functioning autism or asperger syndrome present, absolutely no idea at all.   Not surprisingly I have faced incredibly ignorant comments such as “Well she smiles” or “She looks at you” as if to say because she looks at people, because she smiles she can’t be autistic.  The point is, she does smile (sometimes), she does look at you (if there is no emotion involved) but she still has asperger syndrome and life is still difficult for her in many ways.  I have lost count of the letters I have written and the meetings where I have explained my daughter’s dificulties.  I have even copied them a resource or two.

However, it seems that the school are unwilling to learn about asperger syndrome and are looking to blame us instead.  As I overhead, the TA asked my daughter about her sleeping patterns.  Yes, her sleeping patterns.  What do sleeping patterns have to do with helping my daughter return to school?  I think the TA asked her this because she has been told to ask her this, probably by the head teacher or the special needs teacher who’ve got it into their heads that my daughter’s absences are due to our parenting.

If you read my previous post, you will remember that I wrote about how the head teacher asked the class teacher to call us and tell us that my daughter’s school absences are a welfare issue.  Perhaps they think that I let my child sleep in and that I can’t be bothered sending her into school as a result.  If they think that, then they really do not get it.  As my daughter told the TA, she wakes up very early every morning, a symptom of her sleeping difficulties associated with her aspergers.

It is not parenting that is the issue but the education of my daughter.  If anyone has been neglectful it is the school, overseen by governmental policy that is deeply flawed.  The lack of understanding of asperger syndrome in a school that is obsessed with meeting governmental targets is having a negative impact on my daughter’s wellbeing and I’m sure she isn’t the only one to be suffering.  You only have to read about the increase in emotional and mental health problems in children and young people to question what our society and our education system in particular is doing  to our children.  It’s time we opened our eyes to the sad fact that our education system is failing some of our young people.

Anyway returning to yesterday’s visit, the TA did successfully manage to encourage my daughter back to school though credit must also be given to the lunchtime club.  The one thing that the school did do well (and I will give credit where credit is due) is that they organised an art club.  This has really engaged my daughter and the thought of resuming her club motivated her back.  However, this has all been short lived and this morning my daughter has once again refused to go back into school.

As a parent, this is an incredibly stressful situation to be in.  We want our daughter to be educated but we also want her to be supported and cared for.  The relentless pressure from the school who show little understanding for our situation creates an additional stress and places us into conflict with the school.  We are not neglectful parents, but loving parents who have totally altered our lives to care for our children.  Why can’t the school see that?

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12 Responses to The visit

  1. JuliesMum says:

    I used to feel very frustrated with my son’s primary school, and I used to feel that sometimes a little knowledge could be a dangerous thing. I was often told by teachers that he couldn’t be autistic because he talked so much. I can still remember the SENCO telling me that if he was her son she would never let him behave the way he did. There were a lot of adverse comments about my parenting, in particular focussing on the fact that I went out to work. One thing that really helped me was that one of the paediatricians offered to come to the school and talk to the staff, not just about Aspergers, but about how it affected him in particular. It really turned the situation around, because it showed her support for me as a parent. After that I didn’t have as much of a fight.

    • Aspie in the family says:

      That’s good that a paediatrician came to visit. With both my children we have had no paediatrician who has exhibited sufficient knowledge of the autism spectrum. I had to argue with one to get my son referred to a specialist unit and diagnosed with ASD. As for my daughter, her diagnosis was even poorer. We had no input from a psychologist or doctor; an OT and speech therapist did it and the resultant report was something I could have written. Very poor. Then when I was given her diagnosis I was told she was mild and wouldn’t require support at school (very subjective in my opinion). I’m sttill angry at the way we’ve been treated; we have no professional support and that is why I have to defend myself in the way I do. Still, I’m glad to hear you’ve had someone go into school on your behalf. Deb x

      • JuliesMum says:

        No professional support is really tough. Is there nobody like the NAS who could help? I realise now how lucky I was (though of course at the time I just took it for granted). It helps so much to have someone beside you, even if it’s just for an hour and they say exactly what you would have said.

        • Aspie in the family says:

          I’ve tried the local autism organisation and the lady I spoke to showed a total lack of understanding. She was more intent on telling me that she was a single mum of two kids, as if to say, what’s your problem. I’ve lost confidence with them. Just recently though I’ve made contact with the autism outreach team and they’re coming into help my daughter with transition into secondary school. I’ve also got an educational psychologist but none of this is helping the school to understand their duties, I’m afraid. I think my area is very poor particularly for those with HFA or asperger syndrome who get little or no support or intervention. Thanks for commenting. Deb

  2. Steph says:

    Sending virtual hugs… just wish they could be more helpful (the hugs and the school!). It’s so tough what you are going through, and it is definitely NOT your parenting skills (anyone reading your blog can tell that!). Don’t be afraid to keep asking for more help from any organisation you can find – you never know when a nugget of good information may turn up.

  3. Jim Reeve says:

    Sometimes getting a child with Asperger’s to communicate their feelings can be difficult. It was a great idea to have a TA from your child’s school come to the house. We too have the phone numbers of our son’s EA’s, but one has never had to come for a visit.

    • Aspie in the family says:

      Having the TA come to visit our daughter was an idea of mine. I mentioned it to school and they agreed to it. I realised that we needed a link from home to school to help my daughter go back in. Of course it doesn’t get to the root of the problem which lies with how she is being educated and the lack of support. That is something I have to look into more. Deb

  4. Jennifer says:

    Seriously, look into homeschooling. The schools don’t care and don’t want to spend money on our kids. Sounds like your daughter has auditory processing disorder? Might have her get a full work up via an audiologist well versed in APD. If you haven’t already.

    Anyway, I know what you’re going through and I’m so sorry.

    • Aspie in the family says:

      Yes she has a separate diagnosis for APD. Its a good idea about looking for an audiologist with a specialism in APD. Will look into this. And yes, you’re right about schools not caring. Shameful that this is still the case. Deb

  5. Blue Sky says:

    I was so hopeful reading this, until I reached the end and found out that your daughter refused to go to school again today. I have no advice for you, just that I am dreading the same thing happening here one day xx

    • Aspie in the family says:

      Hi Bluesky; the day after that she then went in again. It is very unpredictable. I think what she is doing is not going in when she is feeling overloaded and where particular lessons are causing difficulties for her. Deb x

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