any in put?

Erin - posted on 03/16/2011

Thank you ladies for all your input. As far as my questions of socialization, I was just wondering if the lack there of was causing some of his autism like behaviours. That is why I tried these activities, and when I recognised that it was only getting him frustrated we left and I didn't push it.

Either way today I got his diagnosis. He is PDD NOS. I always sensed that something wasn't right but it was still a little difficult to here. He has been nothing but a blessing in my life and will continue to be. He's so good natured and sweet. Now I know what I must do what I have to do and make sure he gets what he needs as far as therapies and so forth so he can go as far as he can. Even though I know his road may not be the easiest and at times it will be bumpy and will have it's twists and turns, I'm going to do everything in my power to make it a happy one for him.

Julie - posted on 03/16/2011

Hi Erin, I get the same comments regarding socialising my son, he did go to main stream school until nearly two years ago, but because he didn't like the noise of the other children during break times and wasn't enjoying spending time with other kids i took him out. he is now home schooled and even though we have kids playing in our street he never wants to play with them. They used to knock for him every day but after him telling them no so often they don't bother. He went to preschool too but again he just played alongside the other kids so they might as well have not been there. the point I'm trying to make is, you can force socialising on your child because that's what others think he needs but as your child gets older you might find that's the opposite to what he wants. As long as he's interacting and learning to respond to people in an appropriate way it doesn't matter what age that person is he can learn social skills from his parents or other family members just as well (if not better) than kids of his own age.

Jo - posted on 03/15/2011

PFT! I hate when people say "if they were out with kids more, they'd be 'normal'."

People told me for years, that my daughter needed to be around other kids more. That she'd grow out of her speech issues, tactile issues, sensory issues, occupational issues, and all the other issues we've faced since she was an infant. At 18 months, she wasn't talking. By 2, she wasn't talking. At three, she was echolalic (that's the parroting behavior and using scripted words and phrases in place of spontaneous conversation). Now she's five and I'm still trying to get a formal diagnosis but she's had an IEP for "autistic-like characteristics of behavior" since last summer. She's incredibly intelligent, though. She reads at a second grade level, despite having only turned 5 last month. She's in a kindergarten class at school. Loves to learn and has thrived at school. We just moved, so we don't know anyone in the area, and we really haven't had an contact with other ASD families, though it would be great to get to know a few, we'll be moving again in a few months and I don't want to put their children through that loss that might come if they make friends with my daughter. That's the Army life for ya.

Anywho. Keep fighting. Your child is most important, and for you to have support is important. Don't let anyone tell you that something you did or didn't do was a factor in your childs behavior. If it is Autism, forced socialization could make fits and tantrum a lot worse.

Kristi - posted on 03/15/2011

It is hard to be in that situation. My son and I were in the same spot you are now, just 4 short years ago. He was unable to speak, he just gabbered like a 1 yr old and he was almost 3. His doctor referred to it as intelligent jibberish and referred him to specialist. The problem with that is our insurance company would only pay to see the pediatrician and not the Occupational or Speech Therapists. Frustrated and wanting answers I started looking for help. I finally found it through what is called Early Intervention. Contact your school districts main office and ask them about their Early Intervention/Early Childhood Special Education Program. They are wonderful resources. As for socializing him, find some where to go with kids, but understand to some, most children with Autism do not like nor can handle some of the socalization practices of everyday society. Keep introducing him to these practices but don't over do it cause he may then refuses to try all together. Autism is a balancing act and your are now a detective searching for the right balance. Understanding what it is your child needs and can handle is the key. Those around will learn right along with you or they will eventually avoid you and your family. That is part of being in the Autistic world. Find those who will be supportive of you and your son. Begin building a "team" of individuals that will work with you, not against you. This team includes family, friends, medical professionals, and of course educational professionals.

Hope that helps some. good luck and keep your chin up.
Kristi

Diane - posted on 03/15/2011

My son was diagnosed with autism back in 2001. By that time, he was just about to turn 3, and we already knew he was on the spectrum after doing much research and comparing notes with other parents. But I wanted to share a write-up I received years ago to consider if you are worried he might be dealing with autism:

Suspect Issues or Autism – WHAT DO I DO?

I Think My Child May Have Autism: http://www.tacanow.org/family-resources/...

Now to your son -- my first question is WHAT ISSUES CONCERN YOU?
 
I want to give you some reading resources that maybe can help you ANSWER the question above. Now humor me in this process.
 
1) WHAT ARE THE ISSUES?
What I would recommend is that you may wish to evaluate the criteria and identify with your husband as a team the issues your son may or may not have. This link will give you all the spectrum criteria: http://www.tacanow.com/autism/dsm_level_...

Many families will print this list out, cross off any item that is NOT an issue and write additional notes of concern in areas that may or may not be an issue for your son.

Another thing to consider: Take the ATEC (Autism Treatment Evaluation Checklist), which was developed by a panel of doctors to help parents to get an idea of where he stands developmentally, and consider having him evaluated by a Neurologist.
ATEC - http://www.autism.com/ari/atec/atec_form... ; General info: http://www.autism.com/ari/atec/atec-onli... (We used it to gauge where our son was developmentally. Helped us get a better idea of where he was compared to typical development.) BTW, his first ATEC score was a 96 (zero is neuro-typical).

Based on the results of the ATEC, you may wish to consider having him evaluated by a Specialist. If you do not believe in the answers you are getting, get a second opinion. Go to a facility known for treating Autism, so that you will have access to professionals who are familiar with the signs and treatments. I AM NOT SAYING THAT IS WHAT YOU ARE DEALING WITH. Use your parental gut instinct. You know your child better than anyone. The Doctor Specialist only sees him for a short time, and may not be able to get a full picture. But if there are symptoms pointing at possible Autism, a second opinion should be considered

Also understand I am not a big fan of neurologists. In general, they tend to miss out on subtle things such as sensory integration issues and will “blow these symptoms off” unless they are something extremely debilitating or require long term care (such as seizures, brain abnormalities, etc.) Again – these are my personal feelings. You most likely will get a better picture on addressing your son’s day to day needs through a neuropsychologist or child psychologist that specializes in the developmental delays INCLUDING  but not limited to: autism spectrum and sensory integration issues.

Some additional reading on this topic:

- Diagnosis Editorial: http://www.talkaboutcuringautism.org/aut...

- Interviewing questions and things to look for in para-professionals: http://www.tacanow.org/resources/art-of-...

- Why you do independent assessments (as apposed to just listening the early intervention or school district folks) http://www.talkaboutcuringautism.org/res...

2) Finding a knowledgeable medical doctor in your area:
Regardless if your son is on the spectrum or not, finding a knowledgeable doctor that understands autism or sensory integration is key.  There is a good list of doctors at this link to consider: http://www.autism.com/dan/danusdis.htm  or off the TACA web site http://www.talkaboutcuringautism.org/res...  These doctors are Defeat Autism now (DAN) doctors that can provide help in the area of allergies (which can greatly exasperate sensory issues and test for other biomedical issues that are treatable) and other related issues that only a doctor can help with. Many of these DAN doctors do not like medicating children and will try to take the time to problem solve and find a natural solution if available.  They also provide good insight on recommendations and can work with the para-professional team on these important “what to do next” steps. 

3) Assessment & Services for sensory integration issues and speech as a first step:
Regional center in California is supposed to be there for "at risk children."  You can call the intake and ask for an evaluation for a child you suspect may have global delays (those words get them out faster.)  Call Orange County Regional Center at (714) 796-5100 and ask for the INTAKE SUPERVISOR. As mentioned last night you can cancel the appointment if you want to - it is important to schedule it. Regional center assessments DO NOT COST THE PARENTS ANY MONEY.
For many kids with delays getting a complete assessment and working with a good occupational therapist (OT) and speech pathologist (SLP) can greatly assist in helping mitigate and manage issues unique to the child. Currently – have you had an OT assessment? Or Speech Assessment? I would highly recommend starting here.
 
4) A note on evaluations
There is a big difference between state-funded evaluations and private companies evaluations. Private assessment cost money but are SOOO worth it!  I find them more accurate. That is why this link is SOOOO Important and listed TWICE! http://www.talkaboutcuringautism.org/res...

I know this is a lot of information but I wanted to give you some thoughts to consider and further reading on areas that may be of interest to you. I am also just a volunteer parent – not someone who can diagnose or make recommendations for services (although I have my convictions and suggestions that won’t hold up with the district or health insurance.) It is also important to note that each child is so unique and different. Working with some good strong folks to properly assess your son, make recommendations (that school districts or health insurance pay for) and help your son achieve his true potential is where I would start.

I truly hope this helps.

Erin - posted on 03/15/2011

Thank you. I've tried meetup.com. And got almost no emails about the type of group I'm looking for. 1 came up once but I was unable to because my husband and I share a car and he needed it for work that day.

Katherine - posted on 03/14/2011

Ok so I don't know where you live but meetup.com is a socialization network where you can actually meet moms and children of your caliber.
I belong to a few groups by age and it's fun because not only do I meet new people, I get to socialize my child, get babysitting info, when I was pregnant everyone brought me dinner for 2 weeks.....they have wonderful things like that. So I always tell people about it. It's kind of like FB only you actually get to MEET the people.