Living in a Multiple Diagnosis World
Just when I thought we had a handle on big kid's SB diagnosis and working with the school to receive PT, OT and Speech therapy we are now found (once again) with a diagnosis of Autism.
Let me step back a minute. When big kid was 2.9 he was diagnosed with PDD (Pervasive Developmental Disorder) which falls on the Autism Spectrum. He received ABA services (Applied Behavior Analysis is a method of studying and managing behavior to bring about change. ABA therapists develop research-based behavior intervention plans (BIPs) to reduce problem behaviors in children) for one hour/day 5 days/week. Talk about INTENSE. This was in addition to Occupational Therapy (OT), Physical Therapy (PT) and Speech therapy he received at home. He soon went to a special needs preschool where he was in a class setting of 12:1:1 (12 students, 1 teacher and 1 teacher's aid). He went to school 12 months and did very well. Well enough to be placed in a Special Ed (SE) class at a general elementary school.
Fast forward, big kid is going on 9, has repeated the 1st grade and is in an inclusive 2nd grade class with 32 students (YIKES!). He has two teachers: 1 Special Ed, 1 General. The concept is great, but the class is way too big even for two teachers. Not to mention there are about 15-17 special needs children with individual challenges. I refuse to let my son fall through the rabbit hole. So mother bear did what she does best: research and request evaluations.
After months of evaluations, the conclusion is that big kid has PDD and would be better of in an Autism classroom setting at District 75. We are now waiting for the placement. This is bittersweet for me. On on hand, I went with my gut as I felt that he needed more assistance than what he was receiving at school, on the other hand, I didn't want to come to terms that my child has multiple diagnoses. Having Spina Bifida affects big kid in so many ways already, mainly developmental delays. While to the naked eye he appears "typical" as he is mobile, I still have to look out for any neurological issues, mainly for any shunt malfunctions.
Diagnosis summary:
Let's look at the list of doctors big kid visits on the regular:
Today Big kid took an ADOS assessment test (the Autism Diagnostic Observation Schedule (ADOS) is a semi-structured assessment of communication, social interaction, and play (or imaginative use of materials) for individuals suspected of having autism or other pervasive developmental disorders. The ADOS consists of four modules, each of which is appropriate for children and adults of differing developmental and language levels, ranging from nonverbal to verbally-fluent.). Although the school conducted their own evaluations, we decided to take the advice of the Behavior Therapist and have him get fully evaluated. At least we will know exactly where we stand and get him the assistance he deserves to reach his fullest potential.
I was able to observe the assessment in a separate room. It was so difficult trying to see your son through the eyes of someone else. It was difficult to put the "mommy hat" aside as I observed big kid's responses (or lack thereof) to questions that are common to the "typical" person. My head raced with thoughts of "will he ever catch up?" "How will he function as an adult?" "Will he ever be able to become independent?" At the same time, I'm "smacking my own hand" by telling myself "this is only temporary" "He will receive the therapies he will need to become a grown independent man, who will someday get married and maybe have a family of his own".
Deep breath....SIGH.
Next steps:
We now wait for the therapists to consult the Behavior Therapist and she will contact us for a Parent Conference at which time she will give us her recommendations. In the interim, I will continue to research programs and schools that would be of benefit for big kid. And learn to BREATHE.
1 Corinthians 10:13
"No temptation has seized you except what is common to man. And God is faithful; he will not let you be tempted beyond what you can bear. But when you are tempted, he will also provide a way out so that you can stand up under it."
Let me step back a minute. When big kid was 2.9 he was diagnosed with PDD (Pervasive Developmental Disorder) which falls on the Autism Spectrum. He received ABA services (Applied Behavior Analysis is a method of studying and managing behavior to bring about change. ABA therapists develop research-based behavior intervention plans (BIPs) to reduce problem behaviors in children) for one hour/day 5 days/week. Talk about INTENSE. This was in addition to Occupational Therapy (OT), Physical Therapy (PT) and Speech therapy he received at home. He soon went to a special needs preschool where he was in a class setting of 12:1:1 (12 students, 1 teacher and 1 teacher's aid). He went to school 12 months and did very well. Well enough to be placed in a Special Ed (SE) class at a general elementary school.
Fast forward, big kid is going on 9, has repeated the 1st grade and is in an inclusive 2nd grade class with 32 students (YIKES!). He has two teachers: 1 Special Ed, 1 General. The concept is great, but the class is way too big even for two teachers. Not to mention there are about 15-17 special needs children with individual challenges. I refuse to let my son fall through the rabbit hole. So mother bear did what she does best: research and request evaluations.
After months of evaluations, the conclusion is that big kid has PDD and would be better of in an Autism classroom setting at District 75. We are now waiting for the placement. This is bittersweet for me. On on hand, I went with my gut as I felt that he needed more assistance than what he was receiving at school, on the other hand, I didn't want to come to terms that my child has multiple diagnoses. Having Spina Bifida affects big kid in so many ways already, mainly developmental delays. While to the naked eye he appears "typical" as he is mobile, I still have to look out for any neurological issues, mainly for any shunt malfunctions.
Diagnosis summary:
- Spina Bifida (L5, S1) - this is the location of his lesion on his spine
- Hydrocephalus - water on the brain
- VP Shunt - tube inserted in his head that drains the excess fluid from his brain and drain it safely into his abdomen
- Developmental Delays
- PDD
Let's look at the list of doctors big kid visits on the regular:
- Neurosurgeon
- Neurology
- Urology
- Pediatrician
- Behavior Therapist
- Feeding Therapist
- Physical Therapist
- Occupational Therapist
- Speech Therapist
- Dentist
- GI (rule out acid reflux)
- Ophthalmologist
- Audiologist
- Orthopedics
Sounds like a full time job, huh? Well it pretty much is in addition to my paying full-time job.
Today Big kid took an ADOS assessment test (the Autism Diagnostic Observation Schedule (ADOS) is a semi-structured assessment of communication, social interaction, and play (or imaginative use of materials) for individuals suspected of having autism or other pervasive developmental disorders. The ADOS consists of four modules, each of which is appropriate for children and adults of differing developmental and language levels, ranging from nonverbal to verbally-fluent.). Although the school conducted their own evaluations, we decided to take the advice of the Behavior Therapist and have him get fully evaluated. At least we will know exactly where we stand and get him the assistance he deserves to reach his fullest potential.
I was able to observe the assessment in a separate room. It was so difficult trying to see your son through the eyes of someone else. It was difficult to put the "mommy hat" aside as I observed big kid's responses (or lack thereof) to questions that are common to the "typical" person. My head raced with thoughts of "will he ever catch up?" "How will he function as an adult?" "Will he ever be able to become independent?" At the same time, I'm "smacking my own hand" by telling myself "this is only temporary" "He will receive the therapies he will need to become a grown independent man, who will someday get married and maybe have a family of his own".
Deep breath....SIGH.
Next steps:
We now wait for the therapists to consult the Behavior Therapist and she will contact us for a Parent Conference at which time she will give us her recommendations. In the interim, I will continue to research programs and schools that would be of benefit for big kid. And learn to BREATHE.
1 Corinthians 10:13
"No temptation has seized you except what is common to man. And God is faithful; he will not let you be tempted beyond what you can bear. But when you are tempted, he will also provide a way out so that you can stand up under it."
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