The first thing I did after I got the dx was to empower myself by reading as much as I could. I also started making a million phone calls to get ABA lined up- not an easy task- there is such a shortage of good therapists these days that can align their schedules to yours (especially if youre a FT working mom like me). I then found a good speech therapist and OT. We have since discontinued the speech as I was finding that most of the language Ryan was aquiring was through ABA. Im sure at some point Ill bring it back.
Once therapy started, my son started making progress and every week he is doing better and better. He still has a long way to go but hes very verbal now and Im seeing many areas in which he was delayed starting to come out now (ie pointing was something he never did as a baby, now there is a lot of pointing!)
I try to just model language all the time and engage my son as much as possible.
I know you are feeling overwhelmed but I have always found, thoughout this entire process, that whenever things get too stressful, I need to take a break from autism for a few days (ie stop using the internet, reading, etc), and then I get back on the horse, so to speak.
This board is a fantastic resource, so use it often!
I think that is the longest post I have ever made in my life!My son was first given a cognitive evaluation at age almost 6, and I was shocked by how delayed he was (although part of that was explainable by him being difficult to test due to problems with attention span and cooperation). He got diagnosed at age 7. I did *not* dive headfirst into learning about autism, but had a year of a kind of depression. It helped to join a life-coaching parenting class especially for parents of special needs helped.
Has your son been evaluated by the school district? It is usually the district that provides services, although you can of course get private services as well.
Being an autism parent is a marathon, not a sprint, so I urge you to pace yourself -- pay attention to your stress and energy level.
I myself am a mainstream kind of person, so I haven't delved into alternative therapies at all. If I were you, I would use the mom role that comes natural to me, and add these ingredients:
- more interaction
- more observing
- closer contact with teachers
- less "discipline" and more positive reinforcement/natural consequences
In addition, I think it's essential to understand sensory issues and have a meltdown plan. Here are some resources, in case you haven't seen them yet (I post them often).
http://messageboards.ivillage.com/n/mb/message.asp?webtag=iv -ppiep&msg=2462.1& an article called "Thoughtful Response to Agitation, Escalation and Meltdowns in Children with Autism Spectrum Disorders." I am copying this article to a separate post below.
http://www.isec2005.org.uk/isec/abstracts/papers_m/myles_b.s html - "The Cycle of Tantrums, Rage, and Meltdowns in Children and Youth with Asperger Syndrome, High-Functioning Autism, and Related Disabilities" which is an article by Professor Brenda Smith Myles, with a list of 7 strategies you can use in the rumbling stage (ie agitation and escalation towards a meltdown/rage).
http://www.autism-pdd.net/forum/forum_posts.asp?TID=16187&am p;am p;am p;am p;KW=inside+scoop - " 'Meltdowns': The inside scoop (or rant)" which is a popular topic on our forum started by Stickboy26.
http://www.sensory-processing-disorder.com/sensory-processin g-disorder-checklist.html - for identifying sensory symptoms
http://www.tsbvi.edu/Outreach/seehear/archive/mannerism.html #Chart - for identifying self-stimulating behaviors ("stims") under various sensory categories
When I first found out I went to book store and bought "Let me hear your voice" about a mom that recovered her two kids using ABA & speech, I researched the internet and found a BCBA and ABA therapists and had a full program in home within 2 weeks...then I read every book I could find on the subject on top of reading every link online...I was totally obsessed!
We did 30 hrs/wk VB/ABA, 2 hr/wk Speech, GFCF diet, biomedical supplements, playgroups, 11 hrs/wk kinderkids with ABA therapist to shadow her 2 years. We made tons of flashcards, photo albums, posters...anything to get her to talk:)
If I had to do over...I would of just done ABA and kinderkids, playgroup and skipped the diet, biomedical and even speech therapy..and tried to focus on quality more instead of quanity..also not read too much~especially negative old books that were really depressing.
I would of not looked at everything she did or didnt do so much~it made me crazy with worry!
....and I would of loved to have this board in the beginning to weed out all the info and made some better choices based on parents knowlege instead of being clueless and doing whatever looked promising:)
Slow and steady wins the race! Progress comes with or without heroic measures so do what you can at an even human pace and be a mama first:)
When your first found out your child was on the spectrum, aside from the medical aspect (lining up therepys, and Doctors, etc..), did your habits change?
Did you switch your household product to organic?
Did you start giving vitamins or change your childs diet?
How many hours did you spend researching Autism?
Did you ever feel like you spent too much time concentrating on the new diagnoses or got to consumed with it?
Anything you could tell me would be helpful. I am trying to find out if my response is normal to the new disgnoses, and trying to find a way to help my son while we are waiting on the school boars, appt's, doctors, etc.. to set up his therepys.
I am pretty dissapointed right now, as my son was give a "severly delayed" report from speech eval in early June and was diagnosed with Autism that same month, and we still have recieved nothing in the way of helping him progress. I am not sure if this is normal or not? We are still in the middle of getting more evals to find out more, and in the middle of getting these things started, but nothing to therepy wise yet.
In the mean time, because I feel like precious time that could be used to help him is wasting away, I have spent most of my time tryiny to find out what I can do, at home, to help him.
There are so many different methods, and information though, that I feel a bit overwhelmed in knowing which way to go. PECS Boards, flash cards, diet changes, vitamins, etc... I just don't know where to start. At the same time, I have read about parents saying that they dove in head first, and later regretted it. That they spent so much time focusing on the autism, that they didn't have the time or energy, or even realize, other things in their life (spouses, family time, etc.. ) started to slip. I want to make sure I keep a healthy balance in between treating Daniel's autism, and just enjoying my time with my son while he is young.
My son had his 1st evaluation at age 2. On his vineland communication scale he was age equivalent of a 3 month old. For social, not much better, age equivalent 7 months. We were told he was likely "somewhere on the spectrum" but hard to tell at that age. We were told he needed speech and OT immediately, so that's what we did.
I bought the following books:
The Child with Special Needs: Encouraging Intellectual and Emotional Growth by Stanley Greenspan. (He also recently published another book called Engaging Autism that is outstanding.)
It Takes Two to Talk by Ayala Manolson
You'll see folks here talk about a wide variety of therapies. Folks that have had success seem to be using a mix of things (some ABA, some DIR/floortime, speech therapy, occuapational therapy, physical therapy, RDI). It's like a giant "therapeutic cocktail" with a bit of this and a bit of that. Over time, you'll figure out what the right "mix" is for your child. That is where all of these evaluations can help.
I know that for ABA you need to find therapists and get a team together. For RDI you need to go to some training and work with a consultant. These are great programs if suitable to your situation, but take a little legwork and logistics to pull together. Floortime on the other hand, is easy, you can do it on your own right from the book. When your child is young and non-verbal, floortime does have a therapy feel to it, as you need to get down on the floor (hence the name) and interact with your child in specific ways. After a while it becomes habit and it's just the way you interact all the time.
If you want to take action now, and not just wait until the evals, go out and buy the two Greenspan books, read them, and just start working with him every day. Once you get the other programs you need organized, you can figure out what is the right blend of therapies, but to me floortime is the easiest thing to start on your own right from the book. We had tremendous success with this method.
In response to your other questions, we didn't change our household products to organic, we didn't change diet, add vitamins or try any biomedical interventions. I work full time and spent all of my after work hours engaging C. I did not spend too much time doing autism research. I focused my energy on just getting on the floor and working on getting him to interact. Now that he is 6 and doing well, I spend more time on autism. When C was little I thought the path was clear cut and I knew what I had to do. Now that he is in school there are so many more difficult choices to deal with such as placement, etc. that I really like hearing what other parents are doing and getting other opinions, hence my presence on this board!
I know it's overwhelming at first. Yes, early intervention is key, but don't bury yourself in autism so that you have no life. C's therapy has always been a priority, but we relax, take vacations and do fun things as a family just like regular people. I also have a NT child who needs attention and a sense of normalcy, so it's a balance.
My ds was diagnosed at age seven and I have had a very hard time liningI was consumed - I read EVERYTHING - and I literally mean everything - I found on autism. I spend over 00 on books and read EVERY ONE OF THEM. I tried ABA, RDI, TEACCH, and every other method you can imagine. I was driven. At nights I rocked him to sleep and cried- every single night for 6 months, I cried. I cried while driving, in the grocery store, etc. I ate lived and breathed autism and cure autism for years....but no cure came. I prayed God would heal him - God chose not to. Unlike Shelley and a lot of other Moms who have a good outcome, our son still is on the severe - moderate end and at 8 is not potty trained, cannot ride a tricycle, cannot travel anywhere, we rarely get out, and he cannot converse although he is verbal. I think of ALL the TONS of things I did, the BEST were these:
1. Remembered that MY HUSBAND was first. It was him and me before ds, it will be him and me after. We snatched every 5 or 10 minutes we could to talk or hug or something. We were determined to stay married.
2. Fed ds properly. I think diet is HUGE in kiddos with autism, HUGE.
3. Did not care anymore about the dust bunnies or dirty dishes, priority was husband and son.
4. Finally went and got some grief counseling for myself. When you wait a dozen years and your only son finally arrives and you find out he will never live independantly or marry - you need help, especially when you are alone in the world without family.
I still have a LONG way to go, but I dont cry daily now, the messy house is not important, toys or books around just mean good news (because it means my ds looked at them at least!), time with my husband is precious, and the hugs I receive from my son tell me that he is loved and somehow he knows it.
Loving him is what matters, and although I would have given anything to be one of those on this board with a 'success story' I know that I love my angel boy as much as a mother can love, REGARDLESS of how limited he is and ever will be.
Copyright Autism-PDD.net