ARCHIE’S AUTISM JOURNEY #7 | BATTLING THROUGH THE SYSTEM

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I think one of the hardest things about having a child with Special Needs is not the day to day, we love them with every bit of our hearts, it’s all the extra stress that comes with it. The red tape & paperwork, the fighting to get the right support, the reports, the forms, the appointments, the jumping through all the bloody ridiculous hoops, battling through the system.

Don’t get me wrong, I appreciate every little bit of support Archie has had on his Autism journey so far, but the ongoing battle is draining.

There has been a lot of professionals involved with Archie from a young age, he was showing Autistic traits very early, and throughout the last 18 months of appointments & assessments they have agreed that Archie has Autism, unofficially. Now this is the key thing, at the moment Archie does not have an official diagnosis for Autism even though we know what we’re dealing with, even though his therapy is Autism based, even though he has Autism professionals involved in his care, it’s still not official and won’t be for at least another 12 months.

The waiting list for a MAAT (Multi Agency Autism Team) assessment is in excess of 12 months, and to actually be accepted onto the waiting list you have to meet so much criteria, and not just from a healthcare perspective. Our Paediatrician can’t be the one to refer us to the waiting list, it has to come from an educational environment. So our SENCO at pre school is now taking the lead and is having a daily battle to gather the correct evidence & paperwork to submit. I’ve lost count of the phone calls & conversations we’ve had trying to collate everything we need.

Between us we are filling in so many reports and charts on a day to day basis, chasing other professionals to get the correct reports outlining Archie’s developmental, sensory, social & communication issues in order to meet the criteria for the MAAT Assessment, even though we all know he needs it and even though we all know what the outcome will be.

Some people might wonder why we ‘need’ the official diagnosis but we do need it. We need it as soon as possible as we need to think about his future. Which schools should we be applying for? Would mainstream or a SEN school be better for him? We won’t have his diagnosis before the deadline for applying for primary schools so instead we need to also have an ECHP in place. Simple solution right? No. Again, more red tape, more paperwork, more chasing & battling.

An EHCP is a legal document which sets out a description of your child’s needs (what he or she can and cannot do) and what needs to be done to meet those needs by education, health and social care. So we need an ECHP ready for when he starts primary school, to outline what support he needs on a daily basis. Archie has some very complex needs which I won’t go into but his current nursery, who are amazingly supportive to him, feel that mainstream school would be too much for him. He currently struggles in a room of five children, who he’s been with for the past year, even with 121 support so how he would manage in a class of 25 children I don’t know. Not all children will get an ECHP so we know we have yet another fight on our hands.

The Local Authority have told me they want to take a ‘sink or swim’ approach to Archie’s schooling, which I think is ridiculous. Why would you put a non verbal little boy with very complex development, sensory, social & communiction issues into a situation to see if he sinks or swims before you will outline what support he needs? He will need support from day 1 at school, and in the right school. I have already spoken to several of our local schools who have all told me the same thing. They can’t tell me not to apply to their school as it’s against the Disability Discrimination Act, and that they will do what they can to support Archie, but they don’t feel that their setting would benefit him and that he would severely struggle.

So what do we do? We keep ploughing on, filling in the forms, writing the reports, chasing the info, making the phone calls, following the system because what else is there? Just playing the waiting game?

No, my boy needs his mummy to fight his corner.

Have you been in a similar situation? What advice can you give?

 

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16 Comments

  1. Annie
    January 26, 2016 / 6:18 pm

    I don’t understand why it’s taking too long for your son to get official diagnosis. I live in Pudsey, Leeds and my son got his diagnosis last summer and it took around 6 months probably. We first talked to our GP as we thought he is not responding to his name and was not talking. GP referred him to a paediatrician and then after few months a team at Wortley Beck Health Centre consisting of speech and language therapist, clinical psychologist, specialist health visitor and paediatrician diagnosed him officially. He just started his nursery and is going to mainstream one but I am worried if he will be given the right support there as I haven’t heard from the Wortley Beck Health Centre team again.

    • January 26, 2016 / 6:34 pm

      It’s horrendous, he’s been in the system for over two years now with over 18 months speech therapy. We’ve had three paediatrician appointments, she’s clear that it’s Autism, as is SALT although we’ve had 9 speech therapists! I just don’t understand why it’s such a battle. Our SENCO is getting so frustrated with ‘the system’ as she’s battling too to get him the right support & diagnosis x

  2. January 26, 2016 / 7:47 pm

    I have no advice I’m afraid. I wish I did. We have just started the EHCP stage and Harry is on the waiting list to be assessed by a team of people for a diagnosis for autism but it was his pediatrician who referee him for that so I’m not sure if it’s different rules for different areas. Stupid and frustrating if that’s the case. My fear is that he WON’T get the diagnosis and that we will loose all the support he has been getting and that he will be left to sink (just as you described) once he starts school. If that happens I guess at some stage we will need to start the while process again. Even thinking about it is exhausting.

    • February 12, 2016 / 4:59 pm

      It’s just a nightmare not knowing what’s going on. I’m dreading him starting school without something formal in place, it’s so scary isn’t it? x
      gymbunnymum recently posted…15 EASY VALENTINE’S DAY TREATSMy Profile

  3. January 26, 2016 / 8:55 pm

    The paperwork and the system in general sounds so frustrating and I cannot imagine how hard it is for you playing the waiting game.

  4. January 27, 2016 / 11:21 pm

    Aww it’s an uphill struggle isn’t it. We were lucky with our son and managed to get him diagnosed with autism when he was 3.5 years but it wasn’t easy. I think the stars were aligned correctly and some how it all worked out. Good luck for the battles that keep coming as it’s never ending. The system isn’t great but lets hope it can only get better.
    The Breastest News recently posted…Family Photoshoot – The Good, The Bad & The UglyMy Profile

    • February 12, 2016 / 5:08 pm

      I really hope so, I hoping that after the length of time we’ve already been ‘in the system’ that things will fall into place soon
      gymbunnymum recently posted…15 EASY VALENTINE’S DAY TREATSMy Profile

  5. January 31, 2016 / 8:16 pm

    Utgh I feel for you. The red tape is ENDLESS. We have an ECHP but did you know you have to fill it in every year/review? I nearly cried when they handed it to me last week.
    Keep everything and photocopy the stuff you can’t keep-it’s much easier to refer back to what you said last year. I hate paper work.
    Thanks for linking up #MaternityMondays

  6. January 31, 2016 / 9:23 pm

    What an absolute nightmare. I can’t believe how hard it is to get a diagnosis when itt’s evidently clear that he has autism. He is so so lucky to have you as a mummy though, someone who will fight his corner. Thanks for linking up with #TwinklyTuesday

    • February 12, 2016 / 5:25 pm

      Thanks so much Lisa. It’s been over two years since they first raise the ‘A’ word so I don’t know why it’s taking so long. It wasn’t me that first suspected Autism it was the health visitor so you’d have thought things would have progressed by now
      gymbunnymum recently posted…15 EASY VALENTINE’S DAY TREATSMy Profile

  7. February 1, 2016 / 4:34 pm

    I am really sad to read the difficulty you are having getting an official diagnosis. My son is 2.5 years old and our diagnosis journey was relatively short too. I went to the health visitor with concerns over hearing in March 2015, as he hadn’t began to speak yet, it was in that discussion with the health visitor that she alerted me to his ‘strange’ behaviours and that they may be an indicator of something more than difficulty hearing. Hearing test was completed at the end of April and we had an initial speech and language assessment in May. We visited the paediatrician in September and she requested a diagnostic S&L assessment by the Autism team within the S&L team. We completed developmental information and sent it back to her and received a call on 6th December 2015 to confirm our thoughts that he was indeed on the Autistic Spectrum. So 9 months in total. It is such a shame that these services differ so much from one local authority to another. xx

    • February 12, 2016 / 5:27 pm

      wow, only 9 months? Our HV first suspected something at around 12 months but we’ve been told here they can’t be referred for the assessment until they are three then no he’s three there’s over a 12 month waiting list. It’s so frustrating x
      gymbunnymum recently posted…15 EASY VALENTINE’S DAY TREATSMy Profile

  8. February 6, 2016 / 7:55 pm

    Toni, I completely get all of this! Before the diagnosis was so tough. Luckily Hayden’s pre-school were great and just gave him 1:1 support through a TA but after applying for what I thought was an EHCP and getting denied, we have now been advised to apply for an EHCP. I am so confused! I say we, I mean SENCo. Whilst I don’t agree with the sink or swim method you mention, I was adamant I wanted Hayden to start off in a mainstream school and see how he got on. But obviously each case is different. Whilst I’m not convinced mainstream is the way to go long term, he has made an amazing improvement since September. He doesn’t really follow the curriculum but between Sept and Dec learnt his ABC and was one of 5 children in the year to successfully complete an end of term assessment on letters and phonics, so it can’t be all that bad for him. They are so young and it is so hard to make these decisions because in 10 years time who knows how much autism will affect their lives still. Thank you for linking up to #spectrumsunday would love you to join again this week! (Don’t forget the badge 😉 )
    Clare recently posted…Wicked Wednesday 3rd FebruaryMy Profile

    • February 12, 2016 / 5:28 pm

      It’s so difficult to try & make decisions now that affect their future. Thankfully our Senco is very supportive so fingers crossed we’ll progress and get the support he needs x
      gymbunnymum recently posted…15 EASY VALENTINE’S DAY TREATSMy Profile

  9. February 25, 2016 / 10:08 pm

    I have paperwork all over the place for my boys. We have one mainstream with a full time 1:1 and the other in a specialist setting. I have tips on getting into Specialist settings or how to choose a mainstream school for a child with SEN under my ‘school stories’ tab. It’s a difficult decision – go with your gut, you know your son best!

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