Meeting Matilda....Meeting Autism

[[M]umma[M]ia]

thanks for sharing your story Christy xoxox

[~Saram~]

Originally Posted by christy

I would sit in the GP's office and be told to smack my 14 month old, or that I didn't have "control" over her. I was told to put her in day care full time as she was a difficult child and it would be easier on us. I was told NOT to have anymore children as I obviously couldn't control this one. My family told us that we were too hard on her, but should smack her at the same time . We were a mess with trying different things. That is why we did the Triple P thing, so we could do the same thing at the same time for a while to get our parenting on track, so we could say "we know what to do next".

DH and I did triple P for the same reasons and NONE of it worked! I still remember the MCHN rolling her eyes at me when I said it wasn't working and that he loved to go to time out - would often sit there for hours rocking or cackling with laughter.

We also were told to smack him - to which he cracked up laughing and told us to hit him harder - that broke my heart as I am not a hitting person.

And yep our family to this day think we are too hard on him yet in the next breath are telling us we should let him get away with the stuff he does

I lost nearly all my friends where we were living. No one understood what I was going through. Everyone offered parenting advice and told us what we were doing wrong, no one, offered to come and spend time with us to see what was going on. DH & I walked around like zombies for a few years there. We were used to being very social with having people over and eating out etc etc, but no one wanted to come over when they had to listen to screaming the entire time. No one wanted to watch how it affected DH & I. We had a few friends who came and I think that was what saved us.

I know just what you mean

You are doing such an amazing job and you are fantastic with Matilda - she is very lucky to have found such a wonderful, understanding and embracing family!

[christy]

The 2-3 year

As of Matilda's 2nd birthday, we were still attending Triple P. Matilda was waking for 2 hours in the middle of the night. We had calm birthing classes in our house. We had lost most of our friends, and weren't doing much outside the home.

To be honest, we don't remember much from the year. A month before Jovie was born, we stopped attending Triple P, the social worker said that there wasn't much more she could do and that we should think about having Matilda assessed for Autism, and have her food allergies tested. I started reading about food intolerances but Jovie's impending birth stalled things. A month before Jovie's birth, Matilda's speech stopped progressing. What I mean is it ceased to develop any further.

When Matilda was 2 years 5 months, Jovie came into our family. Jovie was a very easy newborn, but when she developed breast refusal and reflux we went to a lactation consultant who said that Jovie was allergic or intolerant to cows milk protein. It all started that journey with foods.

We went on a diet that eliminated dairy, chemicals and most preservatives (including naturally occuring ones!). We went on a waiting list for an allergist and for Autism assessments at the Mater Children's in Brisbane.

While we were waiting for the appointments we went on the diets but after a month it seemed to get too hard and I started letting Matilda have dairy again. We were off chemicals and preservatives. We figured out that concentrated fruit juice set Matilda off. She would disappear in a "veil" if she had it on. She was also extremely aggitated if she had apple juice. Lemonaide was fine, but apple juice set her off.



The 3-4 years

This was a huge one for us. At 3 years we finally got into the allergist who took one look at Matilda and said she was allergic to cows milk. My answer was "prove it". So he did. She had blood tests, kinesiology tests and found she was severely allergic to cows milk protein. She does have other food allergies as well, but none as severe.

One month off cows milk with massive doses of vitimens and probiotics and she did a huge turn around. Her speech started developing again. She started doing normal stools. Once daily, rather than 4-5 times and runny. She started gaining weight. She also lessened her screaming from 6-8 hours a day to closer to 4 hours 5 days a week.

We thought we were on the way up and that was it! We were so excited we forgot about Autism and assessments. We were able to toilet train her and send her to Montessori. Only the TT was really toilet timing... if we didn't remind her or if she didn't go when all the other kids went she would have an accident. She still does.

While at Montessori, Matilda developed some abnormal social behaviours. She would take things literally to the extreme. If another girl told her that "girls wear only pink" she would get to the car and start screaming and carrying on. She would be inconsolable for hours, she would vomit, poo and wee and roll in it screaming. Then when we got all cleaned up it would come out that she was worried that I wasn't a girl because I didn't wear pink. She refused to wear any other colour for months.

She didn't "fit in" in group situations, but did okay with 1-2 older children around.

She was unable to control her emotions at all. Even when she understood what was going on. The screaming increased with each social interaction that was negative. Then she grew anxious.

We found out that she was petrified of sirens, she would scream everytime and panic and it would take an hour to settle her, but because her speech improved she was able to tell us what it was that upset her. We bought her ear muffs for church and for going out. But every outing in public noisy places meant 2 days of hell afterwards.

A few months before her 4th birthday, Matilda's grandfather passed away. This meant flying to Sydney. When we were here, we were taken care of by friends. They witnessed tantrums and poured the wine. They sent us out for an hour here or there & endured screaming so we could grieve. When we left Sydney we felt as if we were missing support. We decided to move to Sydney in 7 months. We were desperate for support.

A week before Matilda's 4th birthday, we got a letter from the Mater children's hospital giving us appointment times for our multi disciplinary assessments.

[~kellie~]

thank you for sharing your story Christy

[Spring Angel]

You and your family have been through so much.. Thank you for taking time to commit your story to words.

[maz]

[christy]

DH and I did triple P for the same reasons and NONE of it worked! I still remember the MCHN rolling her eyes at me when I said it wasn't working and that he loved to go to time out - would often sit there for hours rocking or cackling with laughter.

We also were told to smack him - to which he cracked up laughing and told us to hit him harder - that broke my heart as I am not a hitting person.

Yes Yes YEs.... with us the time out meant we had to physically restrain her. It meant holding her in a body lock while she attacked us physically... which was okay at 2yrs but at 5 its nearly impossible. She would vomit all over us when trying time out.... it was awful. The smacking thing was the same thing. She LOVES getting smacked. It feels good to her, in fact, that is why she smacks herself... because it feels good.

[feeb]

Hugs you are an amazing woman, very patient and loving. I am glad you could share your pain and hope it helps you.

[MantaRay]

Oh Christy, it really has been such a long and bumpy road for you. I honestly don't know how you do it. She is the most beautiful, bright person, and you can really see how special she is when you meet her - but such hard work for you and Pete. You both do such an amazing job.

[Alipralli]

Thanks for sharing your story.

[DoubleK]

Christy my heart is breaking reading your story, you are such a strong woman

thank you for sharing.

[csab]

Thanks for sharing your story about your little Matilda. What a journey you have been travellng. You and your DH are definately an inspiration.

[christy]

So a few forgotten points as well....

When Matilda was 3 1/2 a friend asked me if I knew about sensory things. I got curious and she said that Matilda may even have some asperger's tendancies... She was worried about approaching me because she knew we were having a hard time and didn't want to "diagnose". I started reading up on sensory integration disorder. A lot of puzzle pieces went together.

A brief run down of Sensory Intergration Dysfunction or Sensory Processing Disorder:

Sensory Processing Disorder (SPD, formerly known as "sensory integration dysfunction") is a condition that exists when sensory signals don't get organized into appropriate responses. Pioneering occupational therapist and neuroscientist A. Jean Ayres, PhD, likened SPD to a neurological "traffic jam" that prevents certain parts of the brain from receiving the information needed to interpret sensory information correctly. A person with SPD finds it difficult to process and act upon information received through the senses, which creates challenges in performing countless everyday tasks. Motor clumsiness, behavioral problems, anxiety, depression, school failure, and other impacts may result if the disorder is not treated effectively.

We were still on the waiting list for the multi-sensory assessment at the Mater Children's Hospital Deveopmental Unit, so I read more. We started treating or parenting Matilda according to SI (as its known in Australia). I avoided loud sensory overloaded places, no shops, no indoor playgrounds etc etc.

After she turned 4, we went in for our first paediatric assessment. The Paed said that Matilda was "quirky" and definately sensory sensitive, but that was the Occupational Therapists job to diagnose. We were happy with that and went on to further assessments. Every month we had another disciplinary assessment. She was cleared for hearing, speech she was 25% but at least within normal ranges. For her physio assessment we were shocked. She had proprioceptive deficits (a neurological sign) and right sided weakness (from my child who climbs 6 foot fences and scales sides of buildings). She could not walk a straight line slowly, but could run it fine. She could not catch a ball, or kick.

We walked out of the physio assessment in shock as the physio was training someone and said that these things were appropriate for SI and Asperger's. I came out of the assessment and sat down and sobbed (quietly as I didn't want Matilda to see me, so DH took her to the park in the hospital cafe while I sat and cried). As I was sitting there, DH handed me his phone. He had just gotten a text from his brother, who had just been diagnosed as an adult with Asperger's.

I went home and researched more... and more... and it was as if the last puzzle piece was put in place.

We did the OT assessment next and had to wait for the compilation of all results to come back to us. We had to postpone our move to Sydney because we wanted to get the results before moving. When we got the results we were confused. The OT showed she had severe Sensory Integrations Dysfunction. The physio results were consistent with that. The paed said she would recommend we go on the waiting list for a Psychological assessment to confirm Asperger's or not. As we were moving, they forwarded our case to the Health Centre and paediatrician of our area. I phoned ahead and put us on the waiting list for the paediatrician and the OT.

The move.... a month before the move we made a story book about what was going to happen. We read it every night and prepared Matilda for the move. The move itself was okay... the trip down was fine. The first week was good.... but then it took ages to get into a routine of life and Matilda lost the plot. We had 6 hours of screaming again. This was prior to Christmas, and we weren't able to get Christmas presents as we just couldn't get to the shops. I was told to keep Matilda out of the shops and away from any sensory overload.

I found a group called Commonwealth Carer's who sent a young girl who worked with Autistic kids and she sat with Matilda for 2 hours over 2 weeks so I could do the Christmas shopping.

I had to do the food shopping at night because Matilda would scream whenever I disappeared from sight. Whenever I left her for a few hours, I would pay for days afterwards with her hitting and scratching me and yelling at me all the time.

Matilda has an addiction to lollies. If we have lollies or ice blocks in the house, she screams until they are all gone. We discovered that our lives were much easier without them in the house.

I got an emergency appointment with the paediatrician two weeks prior to Christmas. We all went as a family. The paediatrician said within 5 minutes that Matilda did not have autism and that her behaviour was directly related to our parenting. We were not parenting Matilda effectively. Despite the fact that DD2 is completely normal, despite the fact that we had all the previous assessments and we had done parenting workshops and courses, we changed our whole lifestyle to fit in with our child, and we were bad parents. I looked at him and told him I disagreed. We left. And were once again without direction.

At the beginning of 2009, we got into the OT we were on a waiting list for. I walked in, with my massive file on Matilda and sat down. Within 5 minutes, without opening the file, she said "oh wow... she is hard" She has severe multisensory issues. I sighed, at last someone who knows what is going on with my child. The OT work helped amazingly. We began understanding more and more how Matilda's brain worked. The OT thought that most of Matilda's issues were SI related and not Autism (aka ASD). So we agreed to work with her for 6 months and not worry about ASD. We still put Matilda on a waiting list to see the Child Psychologist as she shows anxiety.

Then came April..... and that is something I'll have to get to in another installment!

[Santosha]

OMG Christy I can't believe that Paed!! I've been working in the ASD / SI field for years and every now and then I hear of a 'professional' like this who seems to think that they can flippantly judge how a family works and what's going on for a child in one brief, mis-guided glance. It does so much damage, especially when some parents take it to heart and start doubting themselves and all they thought they knew about their child. It makes me totally lose my so-called professional distance and I just want to go and SLAP them. GGRRRRRRR! Sorry you had to encounter such a moron.

[ausgirl]

Wow what a journey! You both are amazing parents to get through this, I don't think I could face something like that.

[willow5]

I think you're doing a great job! It must be so hard I can't even imagine what it's like for you.
Stay strong

[Butterfly Child]

You are such an amazing mother and an inspiration to other mums everywhere. you are doing such a great job christy and matilda is very lucky and beautiful little girl to have u as her mummy xxx thanks for posting ur story

[littlelara]

Wow, what a journey.
You have done everything possible for your little girl, she's very lucky to have you