Category: Therapy

My Star of the NHS. I Salute You.

Dear Nicky

As we approach the 70th anniversary of the NHS, I want to thank you so much from the bottom of my heart.

Being told at my 20 week scan that my baby would be disabled but no one knew how severely, was totally shocking. Being sent home after the birth with no support and a ‘wait and see’ attitude from everyone around was frightening.

It wasn’t until we moved, when Freddie was around nine months old, that we met you Nicky. We had seen around four different Health Visitors between birth and nine months and none had really shown any support or understanding or in fact even read his notes. I hated those baby weigh in clinics. Then we moved and found someone who went the extra mile at every meeting and every phone call.

You made such a huge impact on our lives.

You read his file, you researched, you listened, you had experience of children who weren’t developing as expected. When you have no diagnosis for your child’s disability, it’s hard path. I remember Ollie and I going to the clinic to discus his nine month review. We started the questions and couldn’t answer yes to a single one. We felt so defeated and all the positivity (denial) we had forged on with was crushed. About half way though, it was clear we wouldn’t be able to answer yes to any of the questions. Nicky, you said we would leave it and not bother with it any more. Freddie was on his own trajectory so let’s focus on what he needs. Up until this point, no one had mentioned Physio, OT, play therapy, Portage or SALT. Bare in mind we had a paediatrician, four health visitors and the GP plus we had spent time in SCBU. We were pretty clueless.

 

You were the first person to really get it. You set up the referrals to the various therapies to support Freddie. If we hadn’t moved house and met you, I truly believe Freddie would have been a lot further behind in his development than he is now.

Thank you for caring, going the extra mile and making such a positive difference to his life.

Aimee and Family. xx

 

SWAN UK Blogger

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Is 4.30pm On A Tuesday Too Early for Gin?

Today has been a looooooong one. The wonderful Carys came from Skybound Therapies today.

A full day of speech therapy for Freddie. For me and Ollie too really. Concentrating all day and encouraging Freddie to focus for more than two minutes takes a lot out of you.

She has seen such progress since her last visit. We had to extend the time between visits this time though due to Freddie’s suspected absence seizures, which increase with tiredness. We have to be really careful not to over cook him.

He is very close to achieving all speech sounds now.  The tricky back sounds still need a lot of work /k/ and /g/ but we tried a different Talk Tools method today which made such a difference to his production. Now we have to focus on /th/ /r/ /z/ /sw/ and /tw/. We have such a lot to get through still with more 2 syllable nouns and verbs, multysylabic words  like elephant and violin and 2-3 word noun-verb phrases. We have totally finished box one of the Kaufman Speech Cards and are steadily working our way through the whole of box two with the added support of PROMPT where needed. Phew. We are now adding in sections of the Nuffield Dyspraxia Programme which will run alongside some of the work school are doing with him. 

Speech therapy is a long road for Freddie. With each visit, I see how much more he has to achieve and how much more work I have to do. At times, it’s pretty overwhelming. Worth it though. He has learnt so much in the last 18 months with the support of Carys and I am so grateful we found her. Eventually. 

Anyway. Today has been totally draining so at 4.30pm, Ollie and I cracked open the Gin. Just the one but it was lovely. I’ll be off for an early night. xx