"HELP!!!"

Niki - posted on 04/08/2011 ( 14 moms have responded )

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MY NAME IS NIKI AND I HAVE A DAUGHTER W/ THE AUTISM SPECTRUM DISORDER. SHE IS 3 AND DOES NOT SLEEP THROUGH THE NIGHT! SHE DOES NOT EAT AT ALL ON MOST DAYS AND THAT'S WHY I CHOOSE TO GIVE HER PEDIASURE WHICH IS A VITAMIN SUPPLEMENT DRINK, AND I GIVE HER FLINSTONE VITAMINS. SHE HAS BEHAVIORAL ISSUES TOO SUCH AS IF SHE GETS UPSET (usually w/out notice) SHE'LL THROW WHATEVER IT IS THAT'S IN FRONT OF HER ALL THE WAY ACROSS THE ROOM BEFORE I CAN GET OUT OF MY SEAT TO CATCH IT FROM HITTING ANYTHING SUCH AS THE T.V. OR GLASS DOOR OR EVEN US! ALSO WHEN SHE GETS UPSET OR IRRITATED SHE HITS HERSELF REPEATEDLY ON HER HEAD OR WILL BANG HER HEAD ON THE FLOOR OR WALLS! SHE GETS AGITATED AT EVERY LITTLE THING! I MEAN EVERYTHING!!! SHE SLEEPS 2-4 HOURS AT A TIME AND WAKES UP DURING HER SLEEP TO FUSS OR CRY EVERY 20 MIN. BEFORE FALLING BACK ASLEEP AGAIN. SHE IS EXTREMELY SENSITIVE TO WATER (the wipes, washing her hands under the faucet, and bath time....."OMG!!!") ...... ARE ALL OF THESE "NORMAL" BEHAVIORS OF CHILDREN W/ AUTISM? I FEEL LIKE A FAILURE WHEN SHE ACTS OUT BECAUSE I DON'T KNOW IF I AM ADDRESSING ALL OF HER NEEDS THE CORRECT WAY. I AM AT A LOSS FOR "MAKING" HER FELL BETTER WHEN I KNOW THAT THERE'S A LOT GOING ON IN HER LITTLE BODY THAT SHE IS UNABLE TO VERBALIZE WITH HER VERY LIMITED LANGUAGE DEVELOPMENT (she talks gibberish and a single word will form at the end of her long gibberish sentences) I FEEL SOOOOO HELPLESS AND I AM SAD THAT I DON'T KNOW WHAT TO DO!!!!!!!

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Sheila - posted on 04/10/2011

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Hi Niki,

Rest bite is how it sounds, but it is actually RESPITE CARE. This is when you are essentially given a break from a paid caregiver. So, when you have an official diagnosis, depending where you are, there are services available to ease your struggles.

First, if you are in the States, my understanding is that you contact the school board/district in your area. I don't know the system, so I can't be specific...and from what I have read, different school districts, different support.

If you are in Ontario, you contact Community and Social Services. They hook you up with preschool services, and you go from there. You will need a social worker to help you navigate the system. I am talking about Ontario, Canada.

Contact a local autism support network...you can google one close by and they can help you get started.

As well, I would look into occupational therapy and ABA therapy.

Sheila

Kym - posted on 04/15/2011

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Yes, it is Medicaid. I think each state is different because the funding for Medicaid (Medical Assistance) comes from both the state and the feds. But in PA, your child can qualify for MA due to their disability and currently parent income is not a factor. Mostly because even if you have regular insurance, a lot of times it won't pay for autism services...even when there are insurance mandates (b/c they could be exempt). In our state, you have to not be able to get SSI in order to get MA. I am guessing if you contact a local support group, someone will be able to guide you through the process in your state. :-)

Kym - posted on 04/12/2011

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Do you have a behavior specialist working with you? Not sure what state you are in but sometimes insurance or medical assistance will pay for the behavioral services. You should probably see a doc about the sleep issues. It is very common for our kids not to sleep. :-(

Michelle - posted on 04/12/2011

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Find a DAN! doc in your area! http://www.autism.com/pro_danlists_resul... My daughter has ASD but shows different behaviors but she LOVES water. Any water (cat dish, potty, rain puddles) if there is water she is in it. We have to close the bathrooms to keep her from giving herself swirlys in the potty!(yuck) Which is slowing down the potty training... She is showing interest in the potty but seems to get distracted by the water...
Don't feel sad. Find a support group in your area I think it would really help you and your girl! This book really helped me understand what is going on with it all... http://www.juliebuckley.com/ ADS is complicated and effects everyone who has it differently so treatments must be tailored to that individual's needs and issues... Good luck ! & know your not alone! Read, Research, Find a DAN! Doctor and get a Plan and you will both find some comfort knowing you are on the right path to recovery!

Mary - posted on 04/10/2011

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I agree with Louise, You could use some respite care, and some churches give it, sometimes its called parents night out. check with the YMCA also, and the closest mental health care providers or hopsitals. They will be able to hook you up with services. It is sooo important for you to have time to recharge you. Some places will give you money or vouchers for a movie or dinner out. They can also connect you with local groups that have parents and children like you so that you have local support. There are day camps in the summer that give you a break and her some redirection, and they usually go on a sliding pay scale and offer free scholarships when needed. The local school system can give you special services contacts that offer parent ideals and support training. You may qualify for special preschool, where they can help her with all her issues and give you ideals on how to help her at home. I know it sounds like a lot but really it is all about getting the right support set up for you and your family. once that in place it will seem much easier to handle. Good luck

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Rachael - posted on 04/15/2011

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Sorry... in regard to the food issue - my son "self restricted" his food intake from 12 months and a friend told me to get a food sensitivity test done. I found out there was good reason for him doing so... Worth looking into as a basis at such a young age - some foods will make her feel absolutely terrible or feel so good they will give her a high that she will eventually need to come down from unless she stops eating it!! Find out what foods could be an issue and then go from there - my son will not eat anything he cannot hold in his hand and no dairy and loves nutella (this is his "high" item) but cannot eat hazelnuts!!! Loves bacon and steak now, Fries and home made chicken nuggets in Tempura batter, apples peeled and cored, sultantas in those little red packets, banana's, and only orange cordial - from 2 months... much to the horror of my mothers group!! He is nearly 43kg and 145cm - A BIG boy and a very different picture to when he was a very sickly little 3 year old... My Pead is VERY happy I had this testing done and took the next steps....

Rachael - posted on 04/15/2011

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My boy did the same sorts of things at around 3! The placid turned into a tornado...!!! A lot of us go through it - if this makes you feel any better... and we all felt at the time that we were missing something or not doing something right. The nature of Autism in itself will be constantly changing and just when you get some things sorted and working well for you and your family, something else will come up. Everyone is right! Get out there into your Early Intervention settings and find out what you can get access to in order to help you with ideas and how to best cope under your circumstances. See if someone with great knowledge and experience can come to your home and just watch what is going on, they may be able to give you some "practicle" idea's that you can put in place - lights, noise, water play to help with that sensory issue, visual schedules and communication options to help with the frustration etc. When my husband came home one day at 10am from work after nearly cutting off his arm due to lack of sleep and going through what you are, we went to our Pead. We have him on Risperidal and Melatonin to help with the agression and sleep and it has worked from day one for us. He is now nearly 9 and sleeps between 8pm to 6am. Other friends of mine have tried this combination and it hasn't worked for them but have tried something else and Melatonin and have had similar outcomes.... Remember that if you haven't slept you will not cope with the road ahead either! We have another child a year older that we need to consider also. He is so much happier as he is rested and does not impact on him during the day at all due to the low dose. He is learning because he now can - his brain is able to cope with information coming in and not just coping with everything going on around him. So in turn speech is happening because he has been able to "let it in". My son still strips off at the sight of water - LOVES it, so we give him time in a pool with lessons once a week, baths and showers are good calming options, wallowing pools out on the deck on a good day with plastic cups' - if they need it find ways to give it to them... You are filling a need. It's better than them wanting to jump into the wishing well at the local park! Surround yourself with support that "get you and your situation" and you will feel less helpless. Right down the issues you need to fix now in order to bring some calm into your house and work through them ONE AT A TIME or you will be overwhelmed and not achieve anything! You often find that fixing one problem can lead to a number of them coming right! It will get better - just keep swimming!!!

Mary - posted on 04/15/2011

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You might want to sign up for medicare or is it medicade? Check into it, because although there is a long wait when it does kick in it will cover whatever your insurance doesn't and it opens doors to more services through the government and help getting inhome respite care. No one told me until reciently. So I think I have about four year wait list in Indiana but it will be soooo worth it. and you may qualify for SSI or disability or both which kick in quickly, and is easy to apply for. But from the sounds of what your saying you should get the help no problem.

Sarah - posted on 04/13/2011

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First off...you are not a failure. You are a mommy who loves her little girl and are doing the best you can with the resources you have. The very fact that you are on this site asking for help tells me that you are a good mommy. It is so easy to get overwhelmed and feel like you are the only one. You are not alone. I'm glad that others have given you advice of proper channels to seek to help your daughter and figuring her out. I'm also glad that others have given you encouragement to find someone to give you a break. Stay connected with a support group, it helps me on those days when I feel helpless. I pray that you will continue to find strength (and patience ;) in your situation. Please keep us posted on how you and your daughter are doing.

Niki - posted on 04/12/2011

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THANK YOU KYM AND MICHELLE! I LOVE AND DESPERATELY NEED ANY INPUT I CAN GET! I DO HAVE HER IN BEHAVIOR THERAPY (for 6 months now) AS WELL AS SPEECH THERAPY( 6 months now) AND THAT'LL ALL END NEXT MONTH WHEN SHE TURNS 3. THEN SHE'LL BE IN PRESCHOOL AND THEY OFFER CLASSES TO WORK W/ HER SPECIAL NEEDS. I HAVE CONFIDENCE THAT SHE'LL DO WELL THERE! HOPEFULLY! WE LIVE IN ORANGE COUNTY,CALIFORNIA. THANK YOU I WILL FIND A DAN! YOU GUYS HAVE A GREAT DAY AND ENJOY YOUR KIDDOS! GOD BLESS!

Niki - posted on 04/11/2011

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THANK YOU SO MUCH MARY! I REALLY APPRECIATE YOUR FEEDBACK! ITS GOING TO BE VERY USEFUL TO ME AND MY FAMILY! HAVE A GREAT DAY!

Niki - posted on 04/11/2011

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THANK YOU VERY MUCH SHEILA!! I WILL LOOK INTO THESE THINGS! I WASN'T AWARE OF THESE RESOURCES. I APPRECIATE YOUR HELPING ME OUT! HAVE A GREAT DAY!

Louise - posted on 04/08/2011

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I think you need some serious help here your daughter is acting as I would expect with what she has but there are so many degrees of autism. Contact an autism group that you could go along to and chat with other mums in the same situation, go back to your doctor and tell him how extreme your daughters mood swings are and that you need help. Ring the council and see if there is any department that could give you some rest bite care for your child so that you can get some sleep at some point. There are lots of parents just like you that are having to cope like this, there is no shame in asking for help.

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