An Interview with Judy Blake: About Judy’s World

Feb 8, 2012 by

Michael F. Shaughnessy –

  1. Judy, tell us a little bit about your book- and describe the ” world of autism ” through the eyes of a mother.

My book was self-published a few months ago and chronicles the journey of raising my two boys with Autism and other disorders.  The world of Autism is very complex and misunderstood.  While more people are aware than they were 10 years ago, we have a long way to go.  I wanted readers to know that I am not a doctor, speech therapist, psychologist or diagnostician.  I am a single mother who wanted to share her journey.  My boys, now 20 and 17, have come so far.  I’d been giving speeches for 10 years and people kept asking me about writing a book.  I felt the time was right last year so I could help even more families and educate even more communities across the country.

2) At what age did you begin to suspect that there was something wrong with your child?

Great question and SO important because early intervention is CRITICAL when diagnosing any disorder.  The earlier the child receives help, the better the chances are for improvement.  I noticed that Jason, my first child, was delayed in missing the milestones.  He would eventually achieve them (crawling, sitting up, walking around furniture, talking) but it was always delayed by at least 6-9 months.  Being a boy and that all children develop at their own rate, my pediatrician wasn’t initially concerned.

Jason received the standard immunizations, regular checkups and was involved in playgroups, Gymboree and had every educational toy imaginable.  I noticed right away that he was not like the other kids but I couldn’t figure out why.  My pediatrician couldn’t either and he was a great doctor.  But this was 20 years ago and we didn’t know then what we know today.  When I took him for his 18 month checkup, he told me he was concerned and I need to see a specialist.  We were moving from Michigan to Illinois so I sought help there.

I had him tested by the school district and was told he had a speech delay and fine motor delay.  Again, not unusual for boys.  No one ever mentioned anything about Autism.  He then seemed to catch up a bit in speech.  We only stayed in Illinois for 2 years and then moved to Houston.  By the time I attended the first parent/teacher conference at the private nursery school, they had serious concerns about Jason.  I told them I WANTED to know what was going on but they didn’t know either.  They recommended a developmental pediatrician and I immediately made an appt.  I finally had my diagnoses of PDD-NOS (Pervasive Developmental Disorder – Not Otherwise Specified).  It is a form of Autism.

At 4 ½ years old, I was so happy to finally have an answer but devastated to hear the diagnosis.  I immediately went into high gear with speech/OT/PT and searching for a special school for Jason to attend.  It was very overwhelming but I was relieved to have an answer because now I could finally help Jason.  I never had my head in the sand, but no one could tell me what was wrong.

3) Do you have other children?

Yes, Ryan is also Autistic.  I was MUCH smarter this time and knew what to look for.  At the time when Jason got his diagnosis, Ryan was about to turn one year old.  I could tell something wasn’t right.  Missing the milestones and he just had “the look”.  It’s hard to explain but I know it when I see it with kids on the spectrum.  So I called the doctor again and had Ryan tested.  Sure enough, he was Autistic as well.  Given that he was younger, he received in-home services from the county which he was eligible for until he was 3 years old.  He was then in a PPCD program (Preschool Program for Children with Disabilities) through my neighborhood school.  It was a great program!  Jason had missed the chance for that because he was older when we received his diagnosis.

4) When and how did you receive the first official diagnosis?

See above answers – I think that covers it.  If it were not for being recommended to this specialist, I have no idea where I would have been.  It was truly a blessing!

5) Is your child on medication, and if so, has it helped?

Another great question!  We’ve had many trials and issues with medication.  I am a huge believer in medications for the right child under the proper circumstances.  Do I believe that some kids are on meds when they shouldn’t be?  Absolutely.  But in my case, meds have been very helpful and necessary.  In addition to being on the spectrum, Jason has sever ADD, anxiety and OCD.  It took four different trials of meds and a lot of heartache before we found the right one for his ADD.  He is now on Adderall XR and it has saved him for years.  While he hates being on it and dependent on anything, it is necessary.  He has also taken Zoloft, Celexa and Klonopin to treat OCD/anxiety.  It’s so complicated with medications but they are there for a reason and help so many.

With Ryan, he is also OCD and has anxiety.  He also has Tourettes Syndrome.  It used to be just a tic disorder but the doctor now believes it is Tourettes.  He has had 2 bouts with Trichotillomania (pulling out his hair).  In 5th grade, it was really bad.  It started again about a month ago but is starting to grow back a little.  Probably due to anxiety (although no one knows for sure) he is now back on Zoloft.  I haven’t seen any improvement with the tics so the dosage will probably be increased.

6) In your opinion, how well trained were the teachers to cope with your child and address the needs of your child?

The teachers my kids have had have been wonderful.  But this is due to many factors – they care, they want to learn about my child and I want to educate them every chance I get.  I meet with the teachers about 3-4 weeks into the school year.  I’ve already e-mailed to explain the special needs and then meet to answer any questions.  Some of these teachers have been teaching for 20-30 years when Autism was not well known.  It was always there, we just didn’t have a name for it.  I think the teachers in the special ed schools are well trained.  But so many kids are in the public schools and these kids fall through the tracks.  The teachers do not know what to look for in many cases.  And the lack of funding does not help because even if the teacher does recognize a problem, services may not be available.  It is a terrible problem.  I work with every one of my kids teachers to make sure the lines of communication are open.  I also work with the guidance counselor and principal/asst principal so that everyone is aware. One of the chapters of my book is “It Takes a Village” and this is so true!  I think that for schools in smaller cities, the problem is even worse.  I have a friend who works in West Texas and they are probably 10 years behind Houston.

7) Some, and again, I say some parents have tried various things- megavitamins, glutein free diet, Secretin etc. Is there any one thing that has worked for your child?

I believe that if a parent tells me these methods have changed their child, I am so happy for them.  I have not found them to be of benefit.  The only thing I tried with Jason for a short time was gluten free and it didn’t make a difference.  Maybe I didn’t try it for a long enough time period.  I’m a believer in special education schools, speech therapy, OT, social skills groups and a structured schedule for the child.

8) Let’s go into that room for the IEP—what was your first one like, and did they get better or worse?

Okay – let’s go into that room!  Please join me!  The first IEP was REALLY hard.  In Houston, we call them ARD meetings (admission/review/dismissal).  As a first time parent of a child with special needs, I was emotionally drained and overwhelmed.  I wanted the world for my child and the district viewed services as “educationally relevant”.  To me, that translated as “we don’t have the money and there are other kids worse off than your child so we need to save the services for them”.  While I feel for those other kids, I have to be the advocate for my child.  By the time I had my 3rd or 4th ARD – it was much better.  Jason was progressing.

At first, I had issues with HISD (Houston Independent School District).  But now, I have a great relationship.  They started a small class for high functioning kids that Jason was enrolled in from 2nd – 5th grade.  It was a fantastic program and I applaud the district for having this!  They also started a program for Ryan so he could start in Pre-K!  Now, Jason is in college.  Ryan is in 10th grade and his modifications include extra time on tests/assignments, modifications in work load and preferential seating.  It works because I make it work.

9) What has been most helpful for you in your walk in your world?

I could not have managed without some fabulous speech therapists, OT’s, teachers, doctors, family and friends.  I don’t raise my children in a bubble.  They are in this world and exposed to as much as possible.  Parents MUST have support and MUST have their eyes wide open.  The problems are not going to go away as the child gets older.  The child needs help and deserves help.  It also helps that I am a strong person.  It’s just my nature and I keep forging ahead.  I’m always searching for new ways to help my kids.  Ryan is more delayed than Jason is.  He is more immature and I don’t know that he’ll ever live on his own.  I imagine he’ll be in a group home because he will need the supervision.

10) What have I neglected to ask?

I think you’ve asked great questions.  Something that I raise in my speeches is “Why should society care about people with special needs”?  So many people think it does not affect them.  They’re fine, their kids and extended family are fine.  Friends are in good shape – their parents are healthy.  I tell my audiences that we all MUST care because special needs are everywhere.  They may be hidden as in my case but they still exist.  They could be your coworkers, neighbors or members from your church.  You think they’re just overly nervous and they could have a diagnosed anxiety disorder.  You think they’re cold or aloof when maybe they’re on the autistic spectrum and have trouble with eye contact or social skills.  If someone does not have special needs now, that’s great.  But they will one day because as we all age, special needs arise.  It could be a vision loss, hearing loss, memory loss or high blood pressure.  You name it – something is bound to happen.  Awareness and education are imperative if we are going to help others within our society.

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