Saturday, May 28, 2011

Getting early help for your child

Lessons learned from early intervention, trusting instincts, gaining clarity, and focusing on strengths...

Early Intervention
If you believe that your child is not meeting developmental milestones, talk first with your general pediatrician and ask for a referral to a developmental pediatrician. In our experience we looked to our doctor for advice, but didn't get any.

Listen to Your Instincts
I've learned first-hand that you should always trust your intuition and take action based on what's in your heart. My husband and I suspected that our daughter had autism, yet our pediatrician said
not to worry every time we asked (from about age 1-3). His response was that "all children have a little autism in them."  Not a good response! Pediatricians receive training on how to spot developmental delays and disabilities, but some do not follow through unless they are prodded. At the next visit, we demanded a referral to our HMO's autsim spectrum disorder center. She was assessed at age three-and-a-half. The results were interpreted that she was just "shy" (no autism), and that she was substantially delayed in her cognitive, speech, language, social, and motor development.

From there, we sought help through the school district and she started with some speech/language therapy through the school district. But it wasn't until our developmental pediatrician suggested that we pursue some of the same therapies for autism, that we found a study for developmental delay and autism through the MIND Institute. Our daugther was four by this time, and the MIND Institute then diagnosed her with PDD-NOS, Pervasive Developmental Disorder, Not Otherwise Specified, a condition on the autism spectrum. Our initial thoughts had been correct, and it was a year and a half later that this was validated.

Don't Second-Guess Yourself
So, what I'm trying to say is don't second-guess what your instinct tells you. Our daugther did not crawl, speak many words, point at objects, make much eye contact, respond to her name being called, and did not show an interest in other children. She also lined up and stacked toys and items and had some repetetive behaviors (repeating words out of context). You know those questionnaires you fill out at each of the "well-baby" appointments, the ones that your pediatrician is supposed to discuss with you?  Ours never did.  (e.g., is your baby crawling? is your child able to climb stairs? say words?...) I don't even know if he read them. How could he not?  We switched pediatricians by the way. As parents, it's ok to be assertive with your pediatrician and this may mean demanding a referral or going elsewhere.

Intervention is Key
Our daughter is now five years old, is in preschool and she will be in kindergarten this fall. That year-and-a-half of intervention has made a world of difference. She has speech therapy, occupational therapy (for her motor skills), and attends two preschools (AM and PM). She has made leaps and bounds in her development! Today, she was reading words like "pat, hat, mat, cat." She was sounding out the letters on her own and saying the words. She is working on  language, motor, and social/peer play. Her speech and language abilities have grown. She has a large vocabulary and understand what people are saying most of the time and responds appropriately. She also enjoys meeting and playing with other children now. Before she used to ignore them and play by herself. She just doesn't have sustained interaction with kids. It's short and sweet. We will be working with her on her social skills so that she can sustain friendships and understand social cues.

Each child is different. There is no cookie cutter mold for a diagnosis. We just took her for her annual deveopmental check up and the doctor is sending her back to the HMO autism spectrum center for a new assessment. Rather than focus on her diagnosis, I would like to focus on her needs and strenghts.
Understanding Needs
So...getting help was our first step, but knowing what to do was so darn confusing. There are tons of resources out there, and linking them together based on an individual child's scope of needs is very challenging to say the least. Advocating for our child is like a full-time job. I stay on top of things by keeping a binder with my daughter's records, assessments, correspondence with schools, etc. so that I have everything organized. There's so much to learn, so much to do!  I just started researching as much as I could about our what she needed and then found places to help. One key item was knowing my parental rights in receiving special education. I could not have gotten through the IEP process without doing a ton of research! Wrightslaw is great. So is Kathie Snow's website, Disability is Natural .

I don't know it all, but I am here to help if you need to bounce off ideas. I can tell you what has and hasn't worked for my daughter and others that I have met in my travels.

Child's Strengths

One thing I have to remember is not to forget to focus on and tap into my daughter's strenths through all of this, instead of dwelling on weaknesses and defining her by her disability. I found sanity and new ways of thinking on the Disability is Natural website. Kathie Snow has many wonderful articles to help.
Resources, Resources!
The school system is accountable for providing a free and appropriate education for all children. It was hard to piece together what to expect from them though, such as what supports and programs were available for my daughter. We just kind of stumbled upon them over time and had to learn what to ask for. Again, Kathie Snow's articles, Disability is Natural, on the IEP process and full inclusion are priceless.

What helped most was joining a support group. I joined the CAC (Community Advisory Committee) in my local SELPA (Special Education Local Planning Area). There are SELPAs all around California (and in each state) and each one provides special education to various school districts. To find your SELPA, you can also go to your school district's website and search for SELPA or Special Education. The CAC is a committee that works together with parents and school personnel to address the needs of children who receive special education.

I also attend community courses and workshops offered by Warmline Family Resource Center. That is how I learned about CAC.

Your developmental pediatrician can also provide you a list of other services.

Check out the links in the right navigation area--they're a good first place to look too.

This has all made me a stronger person and I feel able to tackle anything!
And don't forget to take care of yourselves too! Stay strong friends!

No comments:

Post a Comment