Survival Guide 4 Rainbow Moms (special needs kids): August 2009

On Facebook, we have through Autism Global Network a group called 'Food/Diet & Environment'. This group was established so that we, as parents & carers can use a positive and proactive approach when dealing with the issue of food/diet and environment for children on the autism spectrum and with other related conditions such as ADHD and food intolerances. The group endeavours to find solutions to improve our children’s health by having meaningful discussions about diet, including gluten, casein & sugar free diets as well as environmental issues. if you are interested in joining, the Facebook link is: http://www.facebook.com/home.php#/group.php?gid=138953080071

I, just like anyone else, am struggling to implement this dramatic, but necessary change in my home. This is mainly due to the fact the kids just won't eat a lot of the GFCF food. I did, however, have some success that I shared with the group and would like to share with you also. Last night I cooked (with my daughter, Kristie's help) my very first GF lasagne. Wow - it was so yummy and you could hardly even taste the spinach that engrosed each layer. Kristie loved it and was more than happy to have it for lunch today and Shane thought it wasn't bad either. Please note that without the cheese, the lasagne would have been casein free too.

I had run out of our pene GF noodles and so when Aaron asked for noodles for dinner, I had to get out my GF spiral spinach noodles. After a bit of encouragement and making a fun time with the spirals (that go around and round!), he ate them. Great.... now for Jacob. Jacob, who did eat a bit of fruit but hasn't taken to it lately picked up a fresh organic banana and ate all of it. Yippeeeee!!!! I can tell you I went to sleep very proud of the fact everyone in the house had eaten something healthy for dinner, which is a rare event for us.

OTHER NEWS.... I have finally received my ordered book 'Special Diets for Special Kids'. At a glance, it looks to have a wealth of information in addition to the recipes and I am very much looking forward to reading it from cover to cover. What I love the most about the Lisa Lewis pubications is that her diet books are presented in a folder, which makes it much easier to lay out on the bench when following a recipe.I would like to put together a list of the main ingredients to keep stocked in the house for her GFCF recipes and will share it with you when it is done.

HAPPY RAINBOWS,
Allison

The 28th July 2009 was a very big day for me. It isn't every day you get to meet the person who is responsible for running your country. I was feeling nervous, excited, tired, depleted of energy and huge anticipation. But first.... I still had my presentation documentation to complete, a last minute meeting with my beautiful friend and fellow ASD Mom Helen Howson, the Parliamentary Secretary for Disabilities and Children's Services, Bill Shorten, the State MP for Florey, Frances Bedford, and our wonderful support and Disability Advocate from MALSSA Inc., Paul Barbaro to discuss the review to implement a National Disability Parking Permit Scheme to replace the existing 100 different schemes across the country. And of course there was still a family and kids to organise! Thankfully Shane was able to take the kids to school for me so that I could keep working on my written presentation. I had finished drafting the letter the day before, but of course I had to check it over and include some additional information. I felt a huge amount of pressure to get it just right because I knew a lot was riding on how well I did my presentation to the PM. Thank goodness for my good friend Helen Howson who specializes in taking photos of children with special needs (Everyone's Beautiful Photography) because she provided all the graphics for my work, giving it a professional look and adding a human element to our cause. I just got all the paper work I could get done with literally not time to spare (I'm not kidding!) so that I could make our 12:30 meeting on time. I rushed out to the car only to find it wouldn't start because the battery had gone flat. We have an awful problem with flat batteries because the boys often play with the interior lights without us knowing. In a flap, I quickly rang Helen to see if she could pick me up. While waiting for Helen, I quickly made her a sandwich so she could have some lunch, which she really needed because she was sick.

We rushed to Frances Bedford's office where we found Frances, Paul Barbaro, his manager and Government staffers waiting. Unfortunately, Bill didn't make it in the end because his day was completely full and he was running behind, but we still got to meet with everyone else. The meeting with Bill Shorten was rescheduled for later in August. Frances' lovely staff helped me out by printing copies of my presentation for the PM and then Helen dropped me off at Tony Zappia's office (Federal Member for Makin) before she ran off for a meeting with her son's teacher. I was able to bind all of the presentation copies at Tony Zappia's office, make my way over to the bank and then have Shane pick me up. Next stop... drop Shane off at home....pick up the kids from school (1 hr round trip).... rush home..... organize dinner for the kids..... make sure our sitter, the lovely Deanna Bellini, had everything she needed and then ..... time to go. We hopped into the car only to find that once again the car's battery was flat, but it was the other car. We jump started it and prayed we would get home okay. The Public Forum / Ministerial Meeting was amazing. I really enjoyed being there because it was so positive and not at all what I expected. I was taken back at how polite the crowd and the Ministers were towards each other. The Ministers were all responsive to the issues that were raised and promised to follow each of them up after the meeting. I have to say I was pretty impressed. :-)
Then it was time for our one-on-one meeting with the Prime Minister. I have to say I felt special to have been chosen to meet with the PM because only a handful of people were given the opportunity. I can't lie; I was starting to get real nervous while we waited in the meeting area. I still couldn't believe I was actually there. I had a list of issues I wanted to discuss, but decided to go in unscripted because I always do a better job when I speak from the heart. I had the documentation there, so I thought I would just speak to the PM as a Mother of three children on the autism spectrum and as someone who is passionate about advocating for others. Everyone was only allocated 10 minutes for their meetings and so there was very little time to get across what I wanted to say. That being said, my first duty as a mother was to say hello to the PM for Kristie. He wanted to know all about her and listened as I told him about how proud we were of her when she sang at the Autism SA awards ceremony this year. The PM then wrote her a special little note.... HOW COOL!!! Then on to business.... To be honest, I can't remember a lot of the discussion because the whole experience was pretty overwhelming. After briefly telling the PM about our personal situation at his request, and thanking him for putting autism on the political agenda, we discussed the Helping Children with Autism Package. I told the PM that I will just put it out on the table and said that the Early Intervention Funding would work better if it went through Medicare. I told the PM that I was concerned about over charging and the fact the kids weren’t getting access to the funding because of huge waiting lists. I explained that our sons collectively now have $23,600 available to them and I have not been able to use it. The $400 that has been used was for an assessment with a therapist we decided not to use because they were not suitable. I also told him that we would not compromise the boy’s successful outcomes by switching therapists just so we could spend the funding money.

After I told the PM that I was unable to meet with Bill Shorten that day, he called him in straight away and asked him what is being done to improve the situation. Bill explained what was going to happen to make the system more flexible for better access.

I then went on to tell the PM about the playgroup we have been running for families living with autism since March this year. I explained how we believe not enough is being done to support the whole family and that parents are going through some really tough times because there is no-one to personally support them. I said that at the time our 3 children were all diagnosed as being on the spectrum, we were in crisis. I even told him that I had developed pretty bad depression because it was all too much for me and that I had to give up my career and go on the pension to care for the kids’ needs.

Following this we discussed the Rainbow Land Play Time Playgroup and how we (playgroup family) have successfully run it without any funding or grants since March this year. I said to him that if we can manage this with no money, imagine what we could do with a little bit? I acknowledged, however, that we really appreciate the support given to us by the City of Tea Tree Gully in providing us with wonderful facilities in which to hold the playgroup. I explained that the reason we couldn’t get any funding was because our fundamental value is inclusion and therefore we include the whole family don’t have age restrictions . This means we don’t meet the strict criteria for funding and are therefore not eligible. The PM asked Bill Shorten to look at this for us. We were thrilled about this because the kids desperately need better resources to get the most out of the playgroup session. We also expressed our desire to expand Rainbow Land Play Time to include a social skills group for the older kids.

I believe the PM was genuinely concerned for our situation and told us how difficult he felt it must be for us. I know many people would feel cynical when reading this, but I sincerely believe he was genuine because he asked us a lot of questions about our personal situation and was very attentive even though he had had a very long day.

We then had our photo taken with the PM before an unexpected 10 minute meeting with Bill Shorten. It was great to get to meet Bill that day after all and I very much look forward to meeting with him again at the end of August. My good friend Helen Howson and I plan to show him our Disability Parking Permit presentation and to discuss potential funding for the Rainbow Land Play Time family playgroup.

I was in a state of being completely amazed, overwhelmed and excited about our surreal experience as we walked back to the car. Then we remembered the car might not start ….. sure enough…. it didn’t!!! We got it started by some miracle and made our way home.

Kristie was excited to get a personal note from the PM and Deanna was over the moon for us when we told her all about our meeting. It was very difficult getting Kristie to sleep after that and as usual she didn’t get to sleep until very late. I couldn’t help but think about how we just had this once in a lifetime experience and how great things were looking for Rainbow Land Play Time and then it is straight back to the reality of raising 3 children on the autism spectrum. I can never lose sight of the fact I was there with the PM because of my children and that is why it was such a great meeting. You can’t get much better than a 10 minute meeting with the PM that ends up being 20 minutes with an extra 10 minute meeting with the Parliamentary Secretary for Disabilities and Children’s Services!!

I was so proud to be there representing my children and our family’s needs as well as the autism community. I very much look forward to undertaking more work with the Federal Government so we can do as much as we can to improve the lives of families living with autism.

Allison xxx