Diagnosis Journey · home education

An Update…

Its been quiet on this front, primarily because there’s not been much movement.

We did receive a letter from HMRC regarding our tax credits (child tax credit and working tax credit), asking for more evidence from my husband’s self employment.  Nothing unusual there, entirely anticipated and waiting for my husband to pull that evidence together to send in.

And then yesterday, I received a phone call from the Department for Work and Pensions regarding the revision I requested on the mobility portion of my son’s Disability Living Allowance claim.  There was one major irregularity there in that the person I was speaking with did not have the information that I provided when I asked them to take another look.  She did not know exactly what or why I had objected and she asked me to walk her through it.

This is rather concerning considering that the last person I spoke with made notes– I could hear her furiously typing over the phone and I paused often to make sure she got it all down.  Why this information was not passed on, I could not say.

However, I did make the case for mobility as well as I could and now its in their hands and we should hear from them next week.  I got the sense that this decision maker wanted to make the right decision, but I also got the sense that thresholds had changed and definitely got the sense that our decision was on a knife’s edge.  So we’ll see how that goes.  While I’m uncertain what the decision will be, I feel like the decision maker listened to me and we had a dialogue about it all rather than it all being a one-way conversation.

We’ve carried on with playgroup on Saturdays.  While my son doesn’t fully join in with all of the activities, overall he seems happy to go.  My daughter loves going, especially since there is a craft each session and there’s not enough glue stick and glitter for her, ever.

I’ve been slow to carry on with my learning for speech therapy.  It’s my fault I’ve been slow on it, procrastinating. A good portion of it is, “This shouldn’t be MY problem.” as in, still grieving for my son (and I’ll go ahead and say it: grieving for myself too!  Its not easy when the goal posts move from, “okay son, do you want to be President or Prime Minister?” to “is he going to be able to live independently?” ) and still raging against the health system not meeting my expectations and his needs.

However, I did notice some changes in my observations during my son’s reading lessons this week, so clearly I have been taking the speech and language therapy information in and applying it.

Before, I had observed my son trying to anticipate language rather than simply sounding out what was printed in front of him, and I had deemed that as a ‘bad thing’.  I would even get frustrated with him over it, thinking that it was ‘wrong’.  No, not the case.  Its a good thing that he’s trying to anticipate language and now I’m even prouder of him for still striving to do this even when I got frustrated with his reading.

I also noticed that the same errors he makes in reading are the same errors in his day to day speaking– currently its gender agreement and the use of regular verbs in their various tenses.  This is linked to him anticipating language, I’m certain.  Its interesting, how much language and literacy are linked and a true testament that verbal language should definitely be mastered before reading begins.  It’s not all about phonics and making the sounds… its all about comprehension, linking the sounds to knowledge and understanding– puzzling it out, interpreting, and thinking about it.  Its clear to me that’s what my son is reaching for rather than just making the right sounds.

Now I definitely believe phonics is started way too early for children.  I was uncertain of this before, but now I believe it in my bones.  My son did ask to learn how to read and I don’t think I have done anything detrimental in teaching him.  However, his reading will not progress until his verbal language does.  Or perhaps, they can improve in lock step with one another and finding just the right books to use at just the right time for him to read from will be tricky.  Almost all young reader books are about practicing the sounds, not necessarily about practicing the conventions.  There might be a good niche there for writers of children’s books:  write a book with language as simple as Songbirds Phonics Level 3, but allows children to practice gender agreement rather than ‘oo’ and ‘eigh’.  For where the skill level is complex even though vocabulary may not be.

So that’s all to say that I have learned from the speech and language therapy books that were recommended, even enough to apply already.  I should have been done with it by now, but it is what it is.  My son’s still making progress and more importantly, is still engaged in learning, which is a hell of a lot more hope than where he was this time last year.

Besides that, I’ve purchased a Speilgaben for the kids.  What a wonderful piece of kit for learning!  I mean, I thought it looked good online, but after reading the accompanying lessons… just wow, mind blowing.  I know that the sticker shock makes it daunting (I saved for six months for ours), but when considering that both children will be using it, that it can be used in both the more formal structured lessons and the most freeform imaginative play, or for anything in between… and then the lessons that come with it.  I’ve pretty well got the kids’ maths sewn up for the next three years exclusively and they’ll be using it for years and years to come.  Most importantly, they think its pretty cool too!

April is Autism month.  I’ve omitted ‘Awareness’ versus ‘Acceptance’ from that phrase on purpose.  There’s clearly two camps on the issue and those two camps seem to be battling it out big time and its only the 2nd of the month… and its leaving me feeling vulnerable and over exposed.  I had a few thoughts yesterday about just shutting down my social media for the month.  It’s hard to know exactly where I should continue to challenge my son to learning and understanding social norms and then where I should expect others to make accommodation for him.  I’ve not read the book, “Neurotribes”, but I’ve seen the author’s TED Talk and have been considering autism in the context that its always been with us, that its a part of humanity.  I’ll likely end up in the ‘Acceptance’ camp sooner or later, but I just hadn’t completely felt my way through there yet.