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My Post to All Those Facing a New Diagnosis

November 7, 2012

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I have a LOT of people message me on facebook that are faced with a new diagnosis.  When you are faced with the unknown you go to someone that you feel might can advise you.  That can help you. But most importantly, someone that can tell you ‘I’ve been there, I survived and you will too’.  Because the days after a diagnosis are hard.  Or they were for me.  What I’m going to write here is what worked for us. You can take it as advice, you can take it as an account of my children’s autism therapy, you can take it however you want it.  What its not is a silver bullet for every child with autism.  Or every child with a speech delay. Or every child with a sensory issue. There is no silver bullet.  But this is what worked for us.  Take it how you will.

My first piece of advice is also the first piece of advice I was given by someone who’s opinion I really respect and believe.  It came from our diagnosing doctor who also has a son on the spectrum. She told us to go home and box up every toy into lid tight containers that he couldn’t open. If the toy was too large, put it high on the shelf so he can’t reach it.  Put everything up and make him completely dependent on your so that he has to use language or some sort of communication. Then sit down and decide where your child is now. Are you working on using a communication device. Are you working on signing. Are you working on first sounds, are you working on 1 whole word, are you working on a sentence?  DECIDE (or get some help from someone that can make that decision, I was sort of all alone here) and then stick to it. Remind yourself ‘MY CHILD CAN DO THIS’. Through the tears, through the screams, through the tantrums.  Because I have to tell you, this piece of advice CHANGED.OUR.LIVES.  This piece of advice was the light bulb for Rett. He realized how powerful speech was when he had to use it to get what he wanted. It was hard. It was hard to not give in. It was hard to not give up. It was hard to demand from him.  ‘What do you want?’ and he HAD to say ‘I want _’.  There was no exceptions.  Because in the moment where you feel like screaming and crying because he just CAN’T do it, remind yourself, he CAN. And he will if you show him. We also made Rett make choices on EVERYTHING. Do you want milk or juice? ‘I want _’  Which color fork do you want? Which plate do you want?  Which shirt do you want? What shoes do you want?  Its so much work but its so rewarding.  It really was the biggest change for us.

My second piece of advice comes from a web site I found.  I can’t find the website and really wish I could because it was so awesome. Basically it said to look at EVERY activity your child does and see how you can take power of the activity and demand language. With Rett, I would take all the piece to his puzzle and make him say ‘I want cow. I want pig. I want goat’ as he put it together.  I would take all his crayons when he colored and make him request them. If you are playing ball make him say ‘roll it’ before you sent it to him.  If you’re swinging, make him say ‘push me’ or sign it or say just the sound ‘puh’. Wherever your kid is, meet him there and give him that push.  Today on the bed Evie and I were playing with my sun glasses and I made her say, Put them on before I wore them.  Then I always say ‘GREAT job ‘put them on’!  I always repeat what they said that made me proud. I’m not sure if that helps or not but its just what I do.  So take control of activities and see how every activity can promote language.  If your child enjoys it and wants it, then you have the ability to demand things from them because they get the reward of getting what they want/enjoy.

Teach 2 Talk Dvd’s.  These are pricey and they worked for us. They worked SO amazingly.  They have question/answer ones. They have social skills. They have nouns, verbs.. I don’t know what all.  I know Jenny McCarthy has some issues concerning her with the autism community but please don’t discredit these dvd’s because of that.  They are really amazing and both my kids love them.

Vitamin D drops.  I do think both of my kids showed marked improvement after starting vitamin d drops. I just put 2 drops in their sippy. I use this one

I read a study about children with autism having lower levels of vitamin D. I figured it couldn’t hurt. I really do think it has helped us.

My kids don’t have HUGE feeding issues.  I mean its sort of hard to say since it seems like a lot of 2 and 3 year olds have issues eating a wide variety of things at times. But this is what has helped us.  First off we lie to them. Rett went through a phase where he REALLY loved bread and chicken. So everything became bread and chicken. Evie only eats pork and turkey so all meat becomes pork and turkey.  If it makes them at least TRY it, I’m game.  For veggies,  we switch things up.  Canned to frozen back to canned.  I add cheese. I sometimes feed them actually frozen (my oral seekers LOVE the crunch).  I put them in the food processor and grind them up.  We also do that for pork chops/steak. My kids are just more apt to eat it that way.  I know there are cookbooks with hiding veggies in recipes but my kids don’t like ‘mixed’ up meals very much.  So this is what worked for us. I really wanted Evie to eat peanut butter and jelly sandwiches because she won’t eat much meat.  But the stickiness always just overwhelmed her and she wouldn’t try it. Then I bought some of those frozen ones that were on sale. She fell in love and will now eat PB&J regular.  For my kids, they are often scared of ‘trying’ things so they don’t even know if they like it or not. So if its super sticky, try freezing it and thawing for a bit and see if they can try it that way.  Also we sing the ‘try it and you might like it’ song that is always playing at Gymboree. If you kid does try something, really praise them even if they spit it out.  Rett can now try a lot of things without gagging if he doesn’t like it because he know he can spit it out and I don’t care.  I’m more concerned about trying it rather then actually ingesting it.

Try choosing 2-4 things to really concentrate on.  Between speech, ot, pt, ABA, play therapy, swim therapy and Lord knows what else you’ve got going on, EVERYONE wants you to work on stuff.  But it gets overwhelming and NOTHING really gets worked on. So just pick a few things to concentrate on. Right now with Rett I’m working on asking for ‘help’ more specifically.  So when he asks for ‘help’ I’ll say ‘ok what do you need?’ and make him say ‘Get it for me.’ ‘Put it on’ ‘Open it’ or whatever he needs instead of just ‘help’. For Evie its similar things. Just breaking away from her script speech and expanding ways to express herself.  Its also mostly requesting.  With requesting that’s really your #1 way to force some language out of your kid because if they use their words, they get what they want.

Getting your kid to say yes or no.  I learned this from my awesomely amazing speech teacher, Miss Amanda who is a genius.  Your kid is screaming for sippy/juice whatever.  You get it, prompt them to look at your face and ask them ‘Do you want your sippy?’ BEFORE they can answer nod your head emphatically and say ‘say YES!’  If your child says anything besides ‘yes’ (juice, juice yes, sippy, etc) repeat the process until you get a yes all by itself.  Once your child can do that pretty well, drop the ‘say’ but still pre prompt before a response. You can even try saying ‘Say ‘Yeh’ without finishing the word.  Once they’ve got that down, prompt with JUST a head shake (this is why combining the head shake with the response is SO important so that you can non verbally prompt them) and finally, just let them answer.  If they slip back to not saying yes, try the least invasive prompt you can. When they say it make a HUGE deal ‘GREAT JOB, YES!’ and give them their desired item immediately.  You can do the same thing for no. Once I saw how she was teaching this, I had Rett saying yes/no in a week. This was after MONTHS of therapy.  Your speech path just can’t work on these skills as many times as you can because you have HUNDREDS of opportunities a day to make them use their words!  I taught Evie to say yes/no in about two weeks?

I’ll keep adding things as they come up but these are the things that made the most difference to US. I also recommend the books: Raising a Sensory Smart Child, Overcoming Autism, and The Verbal Behavior Approach.

 

I’ve been there, I survived and you will too. And so will your child.   I hope that you all see the amazing results that come from a great therapy program and committed parental support of that program.

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3 Comments leave one →
  1. November 7, 2012 10:58 pm

    Thank you for writing this. I will have to go back and look, but did Rett have any language at all when he was first diagnosed? My son turned 2 last month and was diagnosed back in May. He doesn’t have, nor has he ever had, any language. I would love to use the techniques you described, but don’t know how to go about it when he has yet to say a word. I’m not asking you to give me the magic answer 😉 just wondering what your was. He is getting 15hrs of ABA and 5hrs if ST (with a therapist who uses the verbal approach), so I am hoping he will start talking soon.

  2. November 7, 2012 11:29 pm

    Rett did have language. When we boxed up his toys he went immediately to ‘I want____’ because he had a lot of single word vocabulary. His issue was using spontaneous speech instead of tv talk or speech script that he heard us say. I’m assuming that your ABA is trying to get him to use picture cards to request things or making beginning sounds? I would ask them what they think his first level of communication should be and use that. For the yes/no I would just go for a head shake only or to sign yes/no or use his picture card for yes/no, whatever is more appropriate. Your main goal is to get him so he can somehow communicate his needs now which will cut down on how frustrated he will get and also show him the value of communicating, however it is that he can do that. I hoped that helped, if you’d like to e mail me its lauraleahayes@yahoo.com

  3. November 20, 2012 2:17 pm

    Thank you for coming by my blog, and I am definitely going to get some Melissa & Doug toys for him! His ABA therapist uses them, and he loves them. I am going to keep fostering his interest in letters, words and numbers, he definitely does love them!

    You don’t know how valuable this post is for parents facing a new diagnosis. I wish I would have seen this back in July when he was first diagnosed, and I felt so lost and overwhelmed. Thank you for writing it! 🙂

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