Need Advice, Just found out my 21/2 year-old has ASD

Alice - posted on 06/03/2010

I have twins with autism, and I have found that time is an amazing therapy. Every one keeps telling you to get all these therapies and you rush around like crazy. But a lot of things my sons just did when they were ready to do it!

Of all the therapies we tried, ABA made the most difference. I think because they got big chunks of time of it. They are pretty strongly affected by autism, so any therapy they got for just an hour or so a week didn't do much.

The other thing that was really helpful at the start were the Signing Time DVD's. They both could use signs before they could talk, which gave me hope. They can learn anything that is set to music! Also the Bounce series of DVD's are helpful.
Don't get overwhelmed by advice (easier said than done). Trust your judgment. I think sometimes doctors give you a grim diagnosis to get you motivated to get a lot of therapy.

Judi - posted on 06/02/2010

Find a local book on Autism in Australia we have "The Australian Autism Handbook" it's got stories, ideas, different therpay options, phone numbers for each state, financial information, lots and lots.



Take a moment to gieve, but remember two things: Your daughter is the same little girl that you love, she hasn't changed. If you step into her world lots of times (through therapy, play and listening) she might join you in our world.

Vicki - posted on 06/02/2010

It is hard at first, but with support and understanding it does get better. My son has ASD, PDD, OCD, ADHD, Depression, Learning disabilities, ODD,Anxiety, Sensory Intergration. My other son is delevopmentally delayed and has anxiety. Trust me when I say that it is not easy and support along with some respite time are key.

Ashley - posted on 06/02/2010

my daughter was diagnosed with autism at age 2 she is almost 3 now and..Early Steps is a blessing..They will help with therapies if you dont have medicade and it is wonderful...they work with your child until the age of 3 then they help you get your child in a special school type classroom at you local elementary school..Also I have learned to put together a book to take along in the car for my daughter with pictures of where we are going so that it helps ease her anxiety. She takes ST, OT, PT and it has worked wonders...Some people say that I child with autism is a curse but I believe it is a blessing..We woman were chosen to raise such special children and the look on there faces when they smile and the light in there eyes is worth it all!

Valerie - posted on 06/01/2010

My son was diagnosed at about a year and a half, he is now 3. It will get tiring to deal with a child that is diagnosed Autistic. It's a lot of work. But with time and a lot of patience you will figure something out. There is many places I cannot take my son to cause he will throw the hugest fits. I personally don't like telling complete strangers my sons situation. I feel like it's none of their business any ways. I'm a loud mouthed person myself and to actually have to bite my lip when someone has something negative to say, is an accomplishment in itself. Don't let it discourage you though, there are people out there who know everything you are going through. My son is a wonderful child, stubborn as hell, but I couldn't imagine our lives without him. Through all of the fits he's such a loving and lovable person. I had him through the Inland Regional Center in San Bernardino, Ca. They did so much and helped me and my family with a numerous amounts of things. Just remember take every day one at a time.

Rocio - posted on 06/01/2010

Hi mom,
I would look for the regional center in your area. They provide wonderful services like speech, occupational therapy, ABA, Classroom setting from now into she is 3, then the school district will help you. I know how you feel, be strong and have lots of faith in god she will be fine, pray for your child every single day. Get some parenting education as well to be able to better help your child. They well teach you how to work with them in accomplishing their goals. Good luck.
p.s. Circle of moms is great.

Sheila - posted on 06/01/2010

Hi Chantelle,

I always recommend finding a good OT. Our OTs gave us so many incredible strategies that just opened up the world for my son (started OT at 3, but diagnosed at 4)

As well, inundate with language....like a kindergarten classroom. The word fridge, on the fridge, door on door...etc

If she has communication delays, take pictures of apples, oranges, juice, milk, etc...have them on a "menu board" so that she will go to the picture and bring it to you if she wants something (this applies to all areas of the home). This will help to ease any frustration she might have if expressive language is an issue.

Re-inforce the spoken word with signing. Basic nouns, feelings, activities...you'll be surprised how quickly you can learn about 500 basic signs that again, just reinforce communication.

Use picture books of children with facial expressions. Be explicit in the teaching of social cues. Ex: Oh, look, this boy is sad. Mommy will make a sad face. What do we say when someone is sad, what do we do? Children on the spectrum often need explicit instruction on how to read these cues, where as most of us learned this sort of stuff through daily living. If your child seems perplexed by something, break it down and go through it step by step. Be very methodical in the teaching of why people sometimes do what they do.

Love your little one with all your heart and know that you are her soft place to land. If there are behaviours that baffle you, know that your behaviour might just baffle her. If she has meltdowns, it is not because she wants her way, it is because her little mind is being overwhelmed by the world around her and she will need you to be her anchor.

If, when my son was 2, I had been given a crystal ball and was able to see what he would be like now (age 6) so much of my worry would have been eased.

So, my last piece of advice is to enjoy today. Celebrate TODAY'S accomplishments. Take joy in her little two year old self. If you constantly worry about tomorrow, so much of today is lost. I have a six year old. I don't think about 16....I will worry about 16 in ten years....for now, I celebrate what today has offered us...and I know in ten years, I will celebrate what 16 offers us and I won't worry about 26.

CARPE DIEM!

Sheila

Alicia - posted on 06/01/2010

There are a lot of resources you can tap to learn what you need to know to help her. If you are in the states you can start by contacting your school district and requesting an evaluation for ECSE or early childhood special education. If they determine she is indeed on the spectrum she will qualify for services with them. Most school districts now allow children with ASD to start programs when they are 2 as early intervention is so crucial. If a determination of services is made they will develop something called and IEP which will lay out what your daughter needs and how they think they can best give it to her. You should know that you don't have to sign it until you agree with it. I would suggest making sure you understand the disorder as well as possible prior to signing an IEP as they are good for a full year and the school district is not required to revisit services once it is signed.



You will probably have time to read several books while waiting to get to this point as it usually takes a few months minimum to get the testing and determination accomplished. That is lesson number one - everything in the world of autism services takes a ridiculously long time to accomplish. So don't put anything off. If you hear about a therapy center you think might be helpful put her on the list just in case. You can always refuse their aid when her name reaches the top of the list if you are satisfied with school services or any other form of therapy she is recieving.



My second suggestion would be to get a full medical eval done by specialists to really understand what is gong on. A developmental pediatrician or ped neurologist is your best option. You can also look into a child psychiatrist but make sure they are well versed in autism. The best and most comprehensive diagnostic protocol is a team approach consisting of one of the above types of Dr, a speech evaluation and an eval by an occupational therapist. This really give you a full picture of your childs strengths and weaknesses and you will know what she really needs to progress.



A few types of therapy to look into:

ABA or applied behavioural analysis is an intensive early intervention therapy designed to address the behaviours and challenges associated with autism most especially in children under the age of 6 as this is the developmental stage which allows for the most change. The brain is still forming the nueral connections that will dictate how your kiddo functions. This or any intensive intervention is your best bet at altering the way her brain processes sensory input. My son recieves this and we have seen huge improvements. It is a commitment though as it runs 3-4 years and is anywhere from 25 to 40 hours a week of one on one therapy. There are also challenges in finding funding to pay for it. Not all states require insurance companies to cover autism services so you may not be covered for that. My family is able to access medical assistance on a diagnostic need basis through a program called TEFRA. We have to pay a premium for it but MA covers services private insurance doesn't.



-RDI - I think this stands for relationship development intervention but I'm not 100% certain. This is based on a similar treatment modality as the idea is to alter the neural connections that dictate behaviour. However it isn't geared primarily toward early intervention. The approach is different in that it is more parent based. Your RDI therapist will meet with you and your daughter one to two times a week with the intention of teaching you how to be her therapist. The idea is to increase what they call dynamic relations or domething of the sort. I almost went with this one but didn't think my husband would get on board so chose ABA instead.



Floor time - also more parent based. It's a play based therapy which I don't know enough about to describe accuratley. There are more forms of therapy but these are the most common.



There are also a ton of biomedical approaches. For more info on this I would recomend contacting a DAN doctor. You can do a search online for them and locate one in your area. They will be able to address the physical issues that go along with ASD and suggest medical interventions that may be effective.



There is a lot to learn but take it one step at a time. I know it seems overwhelming now. I felt that way. It was like getting the wind knocked out of me. You will adjust. There are joys that go along with parenting a special needs child as well as challenges. There will be times when she masters a skill that other parents would take for granted that will bring tears of joy to your eyes. These moments of grace will keep you strong. Look for them and it will help. Take a deap breath and know that you can do this one day at a time. Just keep asking questions and learning what you can.



Good luck.

Ilene - posted on 05/31/2010

My story is very similar to yours -- when my g/b twins were 26 months, we were informed that both of them were on the spectrum (official diagnosis of "Severe Autism" for both came about 5 months later). I suspected for my son, but my daughter was a TOTAL SHOCK.

Early Intervention is the best thing you can do for your daughter. Determine what's available in your area and get your daughter into whatever program(s) you can. We started in a classroom setting (following initial in-home speech and OT to determine where they both were). My daughter didn't respond well at all and switched to 1-on-1 ABA and that did the trick. She's FLOURISHING right now (about 10 months since started ABA program).

Everyone's story is different, and every child is different, so don't take what you learn about one child to be the "do all be all". Do what you think is right and don't be afraid to ask questions. You are in that crucial time -- intervention prior to age 5 does so much more than anything done later with less effort. You will need to learn how to help her, but that's a relatively small price to pay.

Good luck, and feel free to post any/all questions.

Lisa - posted on 05/31/2010

Believe it or not you're in a good place....you know. And you are aware at your child's young age. We didn't get a diagnosis until 4 1/2. You can get your hands on so many things to help you. There is so much out there for little ones with autism. Read things by Temple Grandin, she really helped me; knowing about the whole sensory thing really put things into perspective. There was so many things that we weren't aware of with out daughter, now 15. You have the opportunity to do such wonderful things with your daughter. Your doctor may know of therapy in your area. Embrase the uniqueness of your child and the many blessings she will bring.