Hello America

One hour until I land in New York for the second time this year. Tomorrow I begin the second part of my son rise training at The Autism Centre of America.

The first part taught me the home based programme and this week will cover running the programme, training my workers and carrying out team meetings.

i believe this will enable me to run a more productive and efficient programme for Zak.

Since I began the programme in July, we have seen changes in Zak. His curriculum is currently focusing on Zak’s flexibility in his thinking. My proudest moment has been a last minute change from a family cinema outing to a quick dash to Ikea. Now this could drive hubby to a meltdown, let alone Zak!!! He showed total acceptance of this. This could possibly be the idea of seeing his favourite car mat, but hey we all need a little motivation and quite frankly, I don’t care. It was the finest moment in the Elebert household so far this year.

The programme is no sprint and more of a marathon and as patience isn’t my strong point I do question leaving my babies for a week and travelling 4,000 miles alone if all this work is worth it?

Across the aisle from me is a 30 year old man called Jamie. As autism is the first thing I see, before anyother fact about a person, I see it gently accompanying Jamie before I have even buckled up! The fact that he reads and studies The American Airlines Magazine consisting of 130 pages confirms this for me.

As my shyness is in a different league to my patience I waste no time befriending Jamie. Two hours in and I have my answers. I tell him about Zak and after all the pleasantries he tells me about his many challenges as a child and his few as an adult. He is a man of few words but he is independent and the most hopeful fact for me is he doesn’t need ear defenders for take off, to check in with every member of the crew and he doesn’t inspect the food trolley 5 million times. However, he still doesn’t use the noisy toilet for the whole 7 hours of flying but this I can live with!

He tells me of his supportive family, his beloved grandad and a mother who never gave up her belief in him.

So back to my question……is it worth it?

Damn right it is!!!!!

❤️❤️❤️

Ps….. Upon landing Jamie talks to the girl next seat but one to him (I haven’t seen them speak the whole journey) He then introduces her to me as his fiancée!!! I am walking on air……..

COME ON AMERICA LETS DO THIS 🇺🇸 X

Road Trip To America

I have travelled the country with my little man, from healers in Wales to a homeopath in Cornwall and all the counties in between. I love our Thelma and Louise outings and Zak’s knowledge of every vehicle on the road could win me a place on mastermind!!

My next trip is taking me to America to take part in the Son Rise Programme and this time I am on my own! Flying to New York and then getting a train to New England to spend 6 days learning a method that is going to help all of us understand Zak better and connect with him more.

Someone said to me “for gods sake Trish, why go all that way? Zak is high functioning, doing well, why don’t you just accept what is?”

My reply…

We all want our children to be the best they can be, however when you have a child with special needs this is more of a need than a want.

I love Zak just they way he is but if I somehow have left a stone unturned that could possibly enrich his life, in my eyes I have failed.

And finally, you never, ever give up on your child, however small or big they are!

So to my best boy… Have a great week with Daddy, enjoy not being doused in Rosemary oil and having reflexology EVERY night, eat gluten & remember… I love you to the moon and back xxx

Medication Update

This is the one subject I struggle with the most. It took me three years to be convinced to give it a try.

i beat myself up, had endless sleepless nights and drove my nearest and dearest demented with my doubts. But the quote… YOU HAVE TO REACH A CHILD TO TEACH A CHILD finally won me over and we began our Ritalin adventure stroke nightmare.

So twelve months on…

Positives..

  • Zak has stopped bouncing off the walls.
  • Zak has come on leaps and bounds at school.
  • Zak has focus on most things he does.
  • School are over the moon with him.

Negatives

  • Zak now has more time to process his feelings which 99% of the time are ones of anger, frustration and sadness.
  • It has uncovered more autistic traits.
  • His anxieties have heightened.
  • He has lost 9lb in weight.
  • I am now at a crossroads. His progress at school is fantastic but I do not feel comfortable. I don’t like giving him a controlled drug. This puts Ritalin in a category of methadone and pethidene.

 

Even with the positives I don’t believe it makes Zak a happy boy and I am now trying to convince doctors to let him try the non stimulant medication,

My head says Trish, stop over-thinking, Zak is doing well, it’s not forever and just stick with it but my heart screams… stuff the GCSE’s, I want my happy, bouncy solider back!!!!

Xxxxxxxxx

Skiing

With two girls looking forward to their ski holiday at Christmas, behind my “oh kids, it’s going to be great” smile, I have a lump in my throat as large as a tennis ball!!!

ADHD, ASD and a varied amount of sensory issues for my boy to deal with and I am asking him to put on a pair of skis… gulp!

Zak has amazing balance so the actual skiing shouldn’t be a problem but he feels every label, sock seam and every inch of every shoe that comes into contact with his feet!

So the list of my concerns… Too many layers of clothing, too hot, too many people, tight boots, could Zak’s lack of proprioception take the whole nursery slope out in one hit? Will the lifts trigger his anxiety and the one that stresses me the most… thick socks = thick seams!!!

Aware that my worrying is going nowhere fast, the only option I have is to take Zak to the Chill Factor in Manchester!

I book a lesson during a quiet time and allow plenty of time to get clothing hire, boots and skis! Zak is excited and after he has questioned every member of staff he can find, I manage to get his boots on him. The main problem is the helmet and the chin strap is distressing him slightly and I am amazed this one detail didn’t make my list of worries!
I de brief the instructor on what to expect in the hour to follow and off they go…

Zak arrives back to me one hour later with streaming snotty nose and a great big SMILE!

He may have 0% attention skills but his balancing skills are outstanding and topped with the no fear factor, my boy did good!!

Relieved and now looking forward to our hols… once again… proved wrong and proud of him!

Medication

After spending a year deliberating medication for Zak, I decided that when the time came it would be for Zak and not for me. When I saw that his work was being hindered by lack of attention and when he was ready to move on… And not a moment before. Not when I felt I could not cope with another day in the life of Zak and certainly not for some peace… however tempting it has been.

I have reviewed his school work this week and saw for the first time the ability he has, but what starts off as capable ends in unreadable. After a day of tears and questions, I made the decision to put Zak on a trial of medication. Only during school hours, not at weekends and not in school holidays.

The earliest appointment with the team that look after Zak is April… Don’t you just love the NHS!!

Then just as I had things all sorted in my mind, Zak produces this piece of work and leaves me doubtful yet again.

On a lighter note… Well done Zak… I am so so proud of you x x x x

Sensory Bedroom

After months of planning, calling in all favours and working endlessly… Zak’s sensory bedroom is complete!!!

I only wanted one quality piece of equipment and with lots of research, I decided on a bubble machine. I looked at lots of different companies and decided on “The Sensory Company”. Not just on the quality of their products but the staff involved in helping me…Tim and Alison… so so helpful, understanding and fantastic at their job… highly recommended.

It is now up and running and it’s fab!! The mega buttons wireless controls… lots of colours to choose from and great fun to use. It is calming for Zak and the soft play plinth offers a great seat to sit and enjoy watching the bubbles.

The only negative is… I have two daughters and.a husband who want them in their rooms!!!! x x x

http://www.thesensorycompany.co.uk

ADHD Doesn’t Exist????

After a week of family birthdays and Zak waiting impatiently for his to arrive… the day is finally here!!! Zak is seven today and by 9am I am more exhausted than I was giving birth to him!!

However hard I try to keep the house calm and his presents to a minimum so that he can keep focus, the excitement of the day ahead gets the better of him. He is excited (and so he should be on his birthday) but his immaturity and lack of understanding vents this all in the wrong way and we end up with Zak upsetting the whole household and behaving in a totally unacceptable manner!!

I read a tweet this week from the “rent a gob” Katie Hopkins that said ADHD does not exist… only bad mums! Although I admire her guts for saying a lot of things people are thinking, I am extremely uncomfortable for someone having such a strong opinion on something they obviously have no experience of.

I work damn hard in raising my boy and managing his behaviour and commit to it as a full time job! I will listen to anybody’s opinion on what I am doing right or wrong for Zak… after they have walked in my shoes for six months, until then… SHUT UP!!!

So Ms Hopkins I will say this… words have wings, be careful of what you say……they may fly away and damage a mum who is struggling to cope!!!

As for Zak’s birthday, I have until school pick up to “re-ground” myself, breath deeply and find the energy to cope with tonight.

Happy Birthday to my gorgeous boy x x x x

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