The Yorkshire version of Wembley Stadium. Can you spot the pet trying to once again sneak into the photo.

Even comes with a discerning crowd.

If Aspergers Parenting was a football game, well today feels like we have had a key player sent off….

I always naively assumed that if and when son got an official diagnosis then a support package would be out in place to help with his life chances. How silly of me. I didn’t count on year after year, having to fight the system. Trying to prize just the hints of support from a system which has been hammered into the ground by a Government which only looks after itself and it’s friends. To summarise

  • A school system repeatedly fails kids who do not fit into the factory production line which is the UK school system. Two options, either fight for a place in one of the few special schools or accept your child being bracketed as ‘low attainment’ and consigned to the bottom set. The school will then forget about the child and then pat itself on the back if the child gets just one certificate.
  • Letter after letter, call after call trying to find a clinician who is prepared to look at your child’s case.
  • Passed from specialist to specialist who don’t have the time or resources to add your child onto their case load.
  • Service after service cut by a Government which believes that only the rich should be able to buy access to essential healthcare. A Government that sees Mental Health as no more than an excuse to avoid work. Let’s not forget they described a child taking time off from school after a bereavement as an extended holiday.
  • When you do finally get access to a service you then join the growing waiting list. Finally when your child is seen it’s virtually always by someone new, with no understanding of the back story.
  • Finally your child starts to get older and the few services he has had access to are withdrawn as he is now above the age threshold. You see the Government likes to think that after 13, services are pointless and far too expensive. Adults have to sort themselves out.

We have had three brilliant exceptions to this.

  • A Clinical Psychologist who worked with out son consistently for three years. She even delayed her retirement to ensure son’s diagnosis was officially approved.
  • An Occupational Therapy service that worked with him every few months to help with things like coordination. A service which was cut when he reached 13.
  • A wonderful Nurse Counsellor who worked with our son for 3 years helping with his anxieties and joining the fight for additional help.

We entered June 2020 with just the Nurse Counsellor left from his entire care package. And now the player is sent off.

The Nurse phoned today to let us know that she had been reassigned. She is great and some other kids are really going to really benefit from her time. We are eternally grateful for everything she has done. She is going to desperately try to find another clinician to take over from her. I know she will really try. We may get a replacement. The Nurse was the only clinician he really has connected with. Those connections are rare for him. Making a new connection is going to be tough and most certainly not guaranteed. As the Nurse said it feels like we have lost the progress made over the last few years.

Today feels like one of those tough parenting days. As a friend wrote recently we pick ourselves up, dust ourselves down and start again. We most certainly do. But it feels like it’s a much depleted team taking on the struggle. Forgive me I’ve not used a Lord of the Rings metaphor for a while. It feels like the heavens have opened. The hordes are massed outside the walls and I’m stood alone on the Battlements of Helms Deep. Just me protecting our son now. Doesn’t feel like Gandalf is riding over the horizon in the morning. I’m going to have to just find a way of doing this myself.

I’m off now to kick the ball into the net a few times. Maybe with a bit more force than usual. Then the fight starts again.

67 thoughts on “Wembley”

  1. Oh goodness, how heart wrenching. I imagine soul destroying is another word to use. But I can’t think of more than that for how you feel and your son.

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  2. I hope your nurse finds someone for you. Our Government makes me sick (I didn’t vote for them BTW) always penalizing those who need the help the most. They are all liars and shysters. How I wish they would reap what they sow and realise the harm they have done and continue to do.

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  3. Just when he’s struggling so much with the germ issues… and the one person you were hoping would have some time for him soon…
    Have you got an old ball you could put Boris’ face on before you kick it? And that Idjit health minister’s face could use a few kicks too!
    Hugs💌💌

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  4. Totally understand. My 8 year old granddaughter was diagnosed with Autism Spectrum at one year of age. She got special help through the state where daughter lived at the time. But, nothing extra after that program ended. It was called birth to three.

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  5. Argh! And Helms Deep just has that tiny little sewer hole, right? So you have to find the littlest gap to squeeze a human boy into for connection and guidance. So unfair! I will be sending prayers your and Son’s way. I hope this blog helps to give you ideas and some alternatives? I imagine you are reading, reading, reading in between soccer kicks.

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  6. Oh no, that is sad. I am so sorry. I know how hard it is for Declan to let any new person near him or talk to. I hope for the very best in the new clinician and the relationship your son will have with them. Hopefully, the new person will find a way to break through some of your son’s anxieties. I am so hopeful for you.

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  9. Damn. It’s like getting kicked while you’re down. BUT. You do know she’s not forgetting about you, and that’s a start. And YOU are not down and out. You’re winded, but you’re not out. The second wind will come. It always does for us parents when we think it won’t. Prayers for you, and a hug from afar. xxxxxxxx

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  10. I’m sorry. I understand what you mean by feeling much depleted. Started feeling this way myself last night. I had a bit of a guilty smirk at your mention of a Lord of the Rings reference. I used a few in the piece I was working on yesterday. *sigh* I’m so sorry about that loss of progress. That truly is tough. You know what? We will just feel the way we are feeling right now. It’s okay. Then we’ll catch our second wind, rise from the ashes, and kick life in the ash again.

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  11. Possible Ways to Deal:
    1) Find out where she is being transferred to. If it is still in England, move to her new area.
    or, 2) If she is not being moved away, just her new job doesn’t allow her to see your son, get a new diagnosis to whatever is needed to keep her seeing him.
    or, 3) Find out if she is single. If she is, marry her, even if it is just a marriage of convenience.
    or, 4) If she is not single, but not married yet, overwhelm her with your love for your son, so she will leave her partner for you.
    or, 5) Kidnap the partner, even if she is married, and explain how much your son needs her in your life. If they won’t play along, sell him/her to a slaver from Thailand, and then
    6) kidnap her and chain her in your son’s bedroom so she can never leave him again. Once Stockholm Syndrome sets in, help her to accept you as the perfect man for her, and take her out for daily walks, but only after midnight, so know one recognizes her.
    or, 7) if all else fails, name her your son’s guardian and shoot yourself, but only in the foot. Tell her that could have been her foot. She’ll come around.

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      1. There you go, get your son to marry her. (Just adjust his date of birth a bit. What is the minimum age for marriage in Britain?)
        BTW, Gary, you are not old. My partner is 17 years younger than me. She has no problem with me being an old fogey. Ah, as long as her parents never find out, lol.

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  12. It is a shame, it simply is such a shame! There are programs and treatments. I don’t understand why this is so neglected or even ignored. Such wonderful kids with amazing abilities and skills. How can their progress and development be so ignored? A shame!!!

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      3. That is what many don’t understand. It is of no use to be whining around and lamanting about how bad the world is and how everybody, the government, society works against someone. They are waiting until something changes and don’t understand that they have to get up and walk on. If no one shows the way then we need to create our own way!

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  13. Dad, I’m saddened to learn of the struggles you have faced and continue to face in getting the public health assistance needed for your son’s well-being. I’m sending positive thoughts your way that you get a replacement for your Nurse Counsellor who will be as wonderful or better than the one your son connected with.

    When “the hordes are massed outside the walls and I’m stood alone on the Battlements of Helms Deep,” I have found it best to fight one battle at a time. And, unlikely as it may seem, Gandalf always appeared–in the most unusual disguises–at the right time and place when I most needed help. Take heart. Stand firm ❤

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  15. I am so sad to read this. I had hoped the systems were better in other places but it’s just as bad as here. My dad had to fight the system for me here too, they only came around when he threatened to go to the media and they didn’t want that negative publicity. It’s just so typical. I hope things get better, if not… then know you can do it. You are gonna look back at this one day with an adult happy son and think “I did it.” 🙂

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  16. That’s desperate for both of you. It’s such a struggle for parents for so many years and the to have it all taken away is just soul destroying. Really tough for your son and for you. It’s an uphill climb but I know you’ll climb it anyway. Maybe you might find other support along the way. Maybe you’ll discover people who will help you feel not so alone in the fight. Hugs 🤗 and love xx

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  18. How utterly frustrating. I know how rare those connections are, and how callously the system can just break them with the wave of a hand, or a checking of the box. Hang in there and trust that there is a good plan for your son. 💕

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