Sunday, January 9, 2011

Whats worked for Munchkin?




Its been a while since I blogged. For various reasons I've neglected my blog and apologise to anyone who may have been following to see Munchkins progress. I'll bring you up to date with this post...

I get asked a lot "what has worked for Munchkin" as she's made such incredible progress over the years. Part of me gets a little irked at times when I think a parent is looking for the "magic solution" that will "cure" their child. Lets be straight folks... there is NO CURE for autism or aspergers but there are many many therapies that will help your kiddy reach their full potential. Its also not a quick fix or something that you can throw money at to make the problems go away. Its a hard slog and somewhat frustrating at times but with hard work and a lot of input, you can make huge strides in helping your child understand and cope with whatever issues they are struggling with.

So back to the question... "What's worked for Munchkin?"

When the bottom fell out of my World and I heard the confirmation that she has an ASD, like many I took a little while to pick myself back up off the floor, dry the tears and realise that having a nervous breakdown (which allowed me to hide in my own little world for a while), or looking for the answers in the bottom of a bottle of Cabernet Sauvignon wasn't going to help the situation. I needed to become her advocate, her tutor, her teacher and look for practical help. If I was to wait on the never ending waiting lists for therapies, it would be time wasted and lost forever. In this country you find yourself in Limbo, waiting for someone to come and fix the problem. DON'T! Find a local support group, if you can't get out get online support, join Irish Autism Action and get some guidance. There are many courses out there that a parent can avail of to learn how to teach your child. ABA, PECS, Lamh etc... YOU are going to have to put in the work if your child is going to reach their goals. I was lucky that I'd already done courses in Applied Behavioural Analysis and Verbal Behaviour and so had a head start in that I could set up a program for Munchkin. Be aware though that there are plenty of sharks, sorry therapists who will offer you xy&z for large sums of money with false hopes of curing your child. In my opinion, you may as well be throwing wads of your hard earned cash into the toilet. Whilst swimming with dolphins might be nice if you're on holidays, its not going to fix your baby.

We dabbled with the GFCF diet for a year and made great progress. On reflection, I have to question if it was indeed the restriction of foodstuffs or the intense ABA program I had implemented that gave Munchkin the push into verbalising and communicating. She has no restrictions in her diet now and still making forward strides.

In her Assessment of Need she had an occupational therapy assessment. I found the therapist to be very informative of what sensory issues and needs Munchkin had. I took notes on how to help and put the exercises into her home program. A year later, she was still on the "list" for therapy and my local support group Cottage Autism Network provided her with an updated assessment so we could see where she was at that stage. Some of her issues had been overcome and new ones came to light and I was then able to tailor her sensory diet and adjust her program myself. By the time she moved up the list after a few years, we had dealt with many of her issues. Boy was I glad I hadn't waited for the HSE OT slots....

Speech and Language she received when she attended a special needs preschool. She received daily group SLT and once a week she had an individual session with the speech and language therapist. Everything that they were working on in school we were also still doing at home with her.

Home Tuition. This was a godsend as we had the cream of the crop when it came to home tutors. The most amazing person came into our lives in the form of Ursula. She was the teacher in the local ASD unit and hand on heart, I will always be indebted to her. Finding a good tutor is paramount when setting up your home tuition program and we've been so lucky in the three tutors that Munchkin had. DON'T just leave it all to your tutor though. Become involved and work together as a team. As I said earlier, you can't just expect others to fix the problem and the more involved you are in all aspects of your childs program the better the outcome is going to be...

Socialisation. Hugely important! There has rarely been a day since I first suspected that Munchkin might be autistic that she hasn't been around other children. At first there was resistance and little interaction but now she has a host of kids that she refers to as her friends. Sure she might meet someone for the first time in the playground and tell me they're her best friend but hey, she's really social and interested in other kids now.

Play skills. We taught Munchkin how to play with her toys. This doesn't come naturally to a child with ASD and lack of imaginative play is a huge problem for many of our kids. Through ABA and a reinforcement schedule, she learned to play. To look at her now happily playing with her toys its hard to remember back sometimes when this wasn't the case. And as for her imagination... well its amazing!


School. She's now attending an ASD unit full time. It was a difficult decision whether to place her in the unit or not but I met with the school and they agreed that it would be a great stepping stone to mainstream next September. While she has no problems expressing herself verbally there are other behaviours that can be worked on while learning the social rules of school. They are teaching her how to transition and helping her focus on tasks etc. I know that come September, she'll be fully ready to mainstream.

Well that's whats worked for Munchkin... We've both learned so much over the last two years and continue to do so. I'll leave you with a quote from "Parenthood", a show I watched last week which struck a chord with me...

"The greatest barometer for success for children with Aspergers is their parents involvement"

36 comments:

Petunia said...

Comments would be very welcome and appreciated :)

Anonymous said...

Love the blog,,,, keep it up and updated... Bookmarked it now. Spikey

Dory Holden said...

Another fantastic blog missus, I love to read yours. I agree 100% on "The most amazing person came into our lives in the form of Ursula" She is the best and like you I cant thank her enough.

Socialisation for me is high on our list of things for our little man, he struggles a lot with other kids but I am determined to help him with this.

D x

Petunia said...

You're a very welcome addition to my readers Spikey :) Will endeavour to keep it updated now xx

Dory it's been an amazing journey with amazing people along the way. Keep at the socialisation as it really is key to integration missus. Must get together soon for "Ursulas angels" to have a playdate! :) xx

Sesame said...

jeez u took me back to the early days then...my Babs has made great strides too in the 3+ yrs post diagnosis...our home tutor was our saving grace...a lucky find...and did brilliant work with him...we have been very lucky compared to most in this area with services...possibly helps hubby works for hse and having his name and profession on front of babs file brings very wanted attention....tho i think its cos Babs is such a charmer and funny wee fellow that they cant resist seeing him lol...

Perserverance and dam hard work as well as everyone singin from same hymn sheet at therapies, school and home is definitely key to progress...Babs wont be rushed...we could be sloggin away for months to reach certain goals thinking we gettin nowhere then all of a sudden it kicks in and he makes enormous leap.

Thanks for this post....has made me look back and realise how far we have come...Delighted for you and Munchkin that she is making great progress...long may it continue...xx

Lora said...

I was thrilled to find that you had updated your blog and I hope that you continue to do so because I love to find out how Munchkin is doing. Thanks for sharing what worked for her, it reminds me of when Griffin was where she is now and a lot of fond memories. I am glad that she has made great progress and that you have some very obtainable goals.

lifeasweknowit said...

Great post really good insight, we're wading through lists the last 2 years and still no where I started hanen program course and it opened my eyes to everything I should be doing with Diddles. Baby steps ayy! ;)Thanks for sharing what has worked with Munchkin xxxx

Petunia said...

@ Sesame... its great to look back sometimes and remind ourselves of the progress we've made isn't it!
@ Lora... I love to read your blog too and see how Griffin is doing. Love the latest video of him playing with his characters :D
@Lifeasweknowit... thanks for your comment. Read your blog for the first time the other day and looking forward to seeing how Diddles gets on x

Looking for Blue Sky said...

So glad you're back blogging as I love to read about Munchkin's progress. We've also made huge progress in the past twelve months and reading blogs like yours helps to keep me on track xx

@jencull (jen) said...

Yaaay, welcome back, have missed hearing about Munchkin. Love the quote at the end, so very true and aside from the progress it is fun to be so involved :) Jen

SuperLittleMen said...

Looking forwards to reading more on your blog, we are setting out on our journey with mild aspergers and it is a mine field, you offer some great advice thanks

popsie said...

Absolutely thrilled your little one has made so much progress! I too am stuck into that parenthood programme its like watching my middle guy in rewind (he's now 13)But oh boy the makers of that programme have it to a tee! anyway love your blog even though I havnt followed for a while xx

Jean said...

It all goes back to nearly intervention and plain old hard work. Well done Mammy and Munchkin! XXX

Hammie aka lisadom said...

You mean Dolphins don't Work???

well its back to my whole Zebra theory then. I wonder if Budget Travel will let me transfer my deposit from Seaworld Florida to the Serengeti?

In all seriousness this post deserves to be shared - hope I see it on IrishAutismAction Blog soon as it is great advice to anyone starting out - Well done xx

Petunia said...

Thanks for the comments girls. Love your freudian slip Jeanie... "nearly intervention"... well if it was up to the HSE thats exactly what she'd have got lol!
Superlittlemen, I see you're new to the aspergers rollercoaster. It does get easier and look us up on the facebook page, lots of parents there who know the journey you're on and can give you support.
Looking forward to seeing your Zebra Theory Hammie :)

Truf said...

You make me feel like such a bad mother! Just reading the list of her interventions makes me dizzy. It is not surprising she is doing so well when she has you in her team.
Hammie, I have it from reputable source that penguins are the new zebras (and dolphins are soo yesterday dahling!)

Petunia said...

Its far from a bad mother you are Truf! I was just in a very lucky position to be able to cut my hours back at work and concentrate on setting up and supervising a program. If I hadn't been trained in ABA before Munchkin was born I'm guessing things would have been different for her as wouldn't have had a clue where to start. Thats why I did this post, to try help other parents setting out on this journey to see how important it is to train the parents too xx

Steph said...

I love the blog too, a bit belatedly, and I get it! i'm mum to 2 girls, 5 and 3, and our 3 year old was diagnosed with ASD this time last year. Still on that rollercoaster up and down and trying to decide what's best to do to help her.... OT appointment next stop....

Mom said...

My 17-year-old son is mild to moderately autistic. It's been quite a journey with him but he has grown into an amazing young man with high goals and dreams. He is approaching his senior year in high school and he will graduate with a diploma and a 3.95 gpa. My blog is not all about him, it also includes stories about my other 11 children, but stop by and read about his diagnosis and the strategies we used to help him be all he wanted to be. Leave me a comment so I know you were there.
Sandy
www.twelvemakesadozen.blogspot.com

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