Finding Out

The actual process of finding out my son had Autism was different for me than it is for a parent who finds out during the school years that their child has Autism or is on the Autism Spectrum.  The process of finding out your child has a disability, before they enter the school system, takes a lot of advocacy on the part of the parent, but is a vital role to making sure your child is having the best developmental experiences possible. If you find out early on that your child has a disability, early intervention can actually play a key part in them overcoming obstacles (depending upon the disability) during their early development.

Taken from:  http://www.autismspeaks.org/what-autism/learn-signs

Early on I discovered my son would not respond to my voice or to his name.  This worried me, and so as I moved from state to state, I would check with the doctors in each state about what I should do for my son.  In California (CA) I was told that he had to be 6 months to be assessed, and we moved when he was only 3 months old.  The doctor in Idaho (ID) told me he had to be 18 months old, and we moved before he even turned one.  Then the doctor in Arizona (AZ) told me my son needed to be 2 years old in order to be assessed and we moved less than a month after he turned 2.  All those moves landed us back in CA, but by then I felt so beat down by the lack of support in my life, that I was discouraged and did not want to ask anymore about my son and his development anymore, because I felt frustrated that no one seemed to have answers, and that my husband was constantly having us move before I could get my son any help.

Once we got settled in another new apartment, in California, my son began to hit himself in the head and expressed a lot of frustration over talking and eating meals.  He was also experiencing really severe night terrors almost every night for a long period of time.  I worried that he was sick, and noticed that his sister also started to behave oddly by refusing to be laid down on the changing table, and would arch her back all of the time.  These behaviors had me very worried that something was wrong with both of my children, and so I took them both to the doctor wondering if they had a sinus infection or something else going on, or they had been affected by the moving and homelessness that we had experienced as a family.

When I told the doctor all of my concerns (and there were many) she initially referred both of my children to counseling and to a local Regional Center for assessment.  She explained her concerns that my daughter might have spastic cerebral palsy, but never gave me a suggestion about what might be going on with my son.  Personally I was too overwhelmed myself by all the moving and having been homeless and living with family off and on for several months to really see what was going on.  I just needed to get some relief and some help for me and my children.

Even though the doctor referred me to these services, I had to make the phone calls. That was hard.  I wasn't really to accept that my children had challenges that needed to be addressed.  Once I finally accepted that I had to do something, it started by me calling the counseling center because I was concerned my children were behaving this way from all of the stress of moving. I found out that my children were too young to be seen by a counselor but that by a certain age (I think it was 4) if they were still behaving oddly, they suggested I call them back.  The counseling office also expressed that they thought the local Regional Center would be able to help me with my children's symptoms.

I had never heard of a Regional Center before, and there seemed to be a very grey cloud that hung over the discussion of me contacting them.  It made me wary and more than anything, after all the moving and the stress of a lot of change, I was concerned by the feeling I got that contacting the Regional Center might open a dark and scary door in my life that I wanted to keep nailed shut, for now.

However, going home and dealing with my son having night terrors which kept him up all night, and watching him abuse himself during the day (by hitting himself in the head), and then watching his sister behave oddly, left me feeling helpless and encouraged me to make that call finally.  The Regional Center was unbelievably kind and courteous and professional.  They set up an appointment immediately with one of their assessors who would be able to come the next month, to assess both of my children at the same time.  In the meantime I tried to figure out on my own what was going on with my children and tried to make modifications to our lifestyle to meet their needs and in general tried to create a greater atmosphere of stability in our home.

When it came time to meet with the assessor, I was relieved to see that she came to my home to observe my children in their natural environment.  Even though the doctor at the clinic had been very helpful, I knew she had not gotten to see all of the behaviors my children exhibited.  When the assessor from the Regional Center came to my home, she quietly observed my children and was extremely friendly and kind towards me.  She asked me multiple questions about my children, the history of our moving and the stories of my pregnancies and births and what had gone on there.  I felt comfortable sharing my personal information with her, but even more importantly felt that I needed to share all I could with her to help us both unravel the puzzle of what was going on with my two children.

While she observed my children she pulled out an assessment which she discretely filled out to keep from interrupting my children from playing.  When I asked her about it she explained that it was a scale which helped her rank where my children fell developmentally.  Having worked as a teacher before, I was familiar with an educational assessment, but not with a developmental one, and so I felt more comfortable as I found out that the process was fairly similar to what I had done to assess students as a teacher (filling out a form, scoring, ranking) but that it was in part subjective to what the trained assessor was seeing in my home.  When the appointment came to an end she expressed to me that she felt my daughter was doing well, and had not seen any signs of spastic cerebral palsy, but that my son might need more services.  That brought me some relief as I felt it would be quite overwhelming to have two young children diagnosed with disabilities to raise under my current circumstances.

Before leaving, the assessor explained to me that she was going to go back to the office and finish filling out the assessment, and that she needed to write down some notes about what she had observed in the home with the children.  Then she was going to look at some other assessments and things she needed to fill out as well.  She explained that she would be mailing me a formal write-up of the assessments in the mail, with her recommendations, but that in the meantime she would also refer me to some agencies which would be contacting me.  It was also explained to me that the assessment that I would receive in the mail would not be a final diagnosis because that was not typically done until the child turned 3. 

When she left that day, I felt a great deal of love and support from someone I didn't even know existed in our society.  It felt like I could breath a little and take some comfort in knowing that the assessor was going to "call in the recruits" so to speak be referring my son to agencies who could assist him with his developmental challenges.  At that point, I knew I had at least 4 months to try to intervene for my sons sake until I found out what his formal diagnosis would be.  That was when the real work began, that part where you discover how much you truly can mold and shape your child.