Looking back, moving on

Looking back at 2012, it has been one of the toughest years we’ve had as a family. With two children out of school it has been a stressful time caring for them as well as dealing with the SEN system and the professionals that have become involved with us.

For my daughter, her difficulties started in spring when she could no longer cope at school and dropped out, too tired and run down to continue.  We tried hard to get the SENCO to take her aspergers and learning difficulties seriously but she didn’t want to know.  Even when the educational psychologist asked her to submit a request for an assessment for a statement of SEN, she refused to do so.  Fortunately we used our parental rights to submit our own request for an assessment which was subsequently accepted by our local council and by early summer we had a statement for her.  In our case, whilst the SENCO was against us (for reasons we are not sure about) the council were responsive to my daughter’s needs, particularly the educational psychologist who was very supportive of us.  He put in place immediate home tuition to maintain my daughter’s engagement with learning and in doing so we were able to slowly lift our daughter’s spirits over the summer months.

However, we were left in a mess.  The failure by the school in responding to my daughter’s needs earlier enough had left her without a secondary school place.   The academy didn’t want her and the specialised places had gone.  There was literally nowhere for her to go.  Knowing this some professionals suggested I home tutored her but I made it clear that it wasn’t right that parents are forced into home education because of a lack of schools.  If parents want to do it then that’s fine but I didn’t feel it was right for me and my family.  With another autistic child to care for I didn’t have the energy to home educate on top of everything else.  I also felt it was far better if my daughter was in a specialised school where she could have the opportunity to develop her independence away from me.  So, after yet more umming and ahhing and after yet another meeting with education officers, the council eventually recommended that my daughter attend the local Pupil Referral Unit which supports children with ASD’s and/or medical issues.  We agreed to this and we are now at a stage of helping her to settle there.

As for my son, his school refusal is due to his anxiety disorder which spilt over into agoraphobia.  This is not the first time he has not being able to attend school due to agoraphobia so we almost knew the drill from last time.  However, this time we have the added challenges of adolescence + autism which is having an effect on both his behaviour and sleep.  Before we could even contemplate getting him back to school we had to sort out  his mental health so with the help of his psychiatrist we worked at getting his anxiety and sleeping difficulties under control.  At the same time he also received home tuition and whilst this was very difficult for him we wanted to send him a message that he could not opt out of education.  This was a challenging time for all concerned.  The tutors found my son complex and difficult to engage with but I reassured them that this wasn’t necessarily about him learning anything but about helping my son to transit back to his special school.

It all paid off and as I blogged in this post we eventually got him doing a few lessons a week in his school.  This is a fantastic achievement for everyone involved in supporting my son and I hope that the professionals involved with us over the last year have learnt a lot from us.  More importantly though, this is an absolutely massive achievement for my son who has found the courage to face his fears and to start to enjoy things that previously frightened him so much.

As for me, now that we welcome  in the new year I feel much more positive than I did this time last year.  I no longer feel that I’m treading water looking, hoping and praying for the tiniest off breakthroughs.  Now both my children have started at their schools I am hopeful that we can continue to move forward in a positive way.  That is my main goal for 2013.

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This entry was posted in Aspergers, Autism Spectrum Disorder, Care, Girls with aspergers, Mental Health, Motherhood, School, School Refusal, Special Educational Needs and tagged , , , , , , , , . Bookmark the permalink.

5 Responses to Looking back, moving on

  1. JuliesMum says:

    Best wishes to all of you for 2013.

  2. Jazzygal says:

    Oh, well done Deb. You and your family really have been through such a tough year. It can’t have been easy but you are all incredibly resilient. I am so glad that things worked out so far but I tell ya something, if you have any energy left then a very strong worded complaint should be leveled at that SENCO!

    Happy New year, you deserve every good wish in 2013 :-)

    xx Jazzy

  3. Joanne says:

    Wonderful blog, I have been following you ever since my daughter was diagnosed, you gave me courage to blog my self as a way of expressing my feelings and i hope you dont mind but i have linked my latest post to this one it inspired me so much.

  4. Galina says:

    Dear Deb, happy new year to you and your family. Hope 2013 will be less stressful. Wishing more understanding and acceptance to all families who have children with special needs.

  5. Great to read such a positive post. You really have to hold your nerve at times as a special needs parent don’t you? And hang on to what you know is right. So pleased that both of your children are back in school and here’s hoping that 2013 is a much better year for you all xx

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