My 4 year old daughter was recently diagnosed with Pervasive Developmental Disorder, sometimes called PDD or PDD-NOS (not otherwise specified.) You guys know that I mention Little Girl a lot on illistyle and a TON on my instagram (which you can see some of on my side bar, over there —>), but I have not talked about our journey getting her diagnosed. But before I do you might be wondering:
What is PDD-NOS?
PDD, or Pervasive Developmental Disorder is one of the three Autism Spectrum Disorders, along with Autism and Aspergers. It can also be called A-typical Autism. It doesn’t quite meet the criteria for typical Autism in all areas with some areas of development being more or less severe than typical Autism or the symptoms may show up later than expected.
Signs and Symptoms
PDD-NOS can look a lot like Autism or Aspergers with symptoms including communication difficulties, social behavior issues, lack of eye contact, skill development delays in some areas while excelling in others, difficulty with changes in routine, unusual play, and repetitive body movements and/or behavior patterns.
Our Journey to Diagnosis
In my daughter’s case her symptoms showed at around two years and were very typical in many areas. She had social behavior issues which looked like social anxiety, she lacked eye contact, her gross and fine motor skills were far behind, she had difficulty with changes to routine and would throw intense tantrums that included biting herself out of frustration, she would watch one movie repetitively for months on end. She also had some physical responses that seemed a-typical, she did not cry when she received vaccinations but having her hair brushed was as if she was being tortured, she was constantly in motion and seeking the thrill of her body moving and bumping into objects, and though she loved to make loud noises she could not stand the sound of the blow dryer or the toilet flushing and was constantly asking others to “Be quiet” because normal speaking volume was “hurting her ears.” She did not exhibit any language delay or difficulty, in fact she has always been advanced in her speech and even speaks two languages.
As her mother I knew that her behavior was a sign that she was struggling. I could see how difficult social interactions were with other children and how she struggled to deal with transitions. I knew that her behavior was pointing to something larger going on, but I did not know what. And as a mother all I wanted to do was to help my daughter and to do that I needed to understand what was going on with her.
Then I saw this pin on pinterest. I know that sounds weird… that our journey to diagnosis started on pinterest, but I believe that was God’s provision for us. At the time we were living on the small island of Roatan, Honduras. There is very little medical care on the island and behavioral health is almost non-existent. So I believe God provided for us through this post from Melissa Taylor of Imagination Soup about her daughter’s anxiety and Sensory Processing Disorder. I first read that post 50 weeks ago. It has taken almost 1 year to get my daughter the help she needs.
After reading Melissa’s daughter’s story, I began reading all I could about Sensory Processing Disorder. I did a lot of reading on how to help her sensory issues, such as the touch, movement, and hearing issues I mentioned earlier. My daughter fit many of the criteria, but it did not seem to cover every symptom I was seeing in her at the time – such as the lack of eye contact and difficulty with transitions during daily routine. In all my reading I found many strategies and therapy procedures that worked for my daughter that we did at home. During the six months while we were still in Roatan and I was working alone with my daughter she went from scoring 100% in many areas of this checklist found at Sesory-Processing-Disorder.com to scoring 50-60% in those same areas. But as a parent who is not a trained professional I could only help so much. I knew that my daughter needed more help than I could provide on my own. I just did not know how to get her the help she needed.
We moved back to the US in December and in March we were able to get health insurance through my husband’s new job. I started our journey navigating the US health care system by meeting with our daughter’s pediatrician. She saw first hand our daughter’s symptoms as my daughter screamed and tore off the paper gown they had asked her to wear because “it was itchy.” Our doctor requested approval for occupational therapy for motor skill development, speech therapy for her social interactions, and applied behavioral therapy for her life skills. Our insurance turned us over to their behavioral health arm, which sadly, was a complete waste of time. That arm of the insurance was completely unhelpful. They would not render any of the pediatrician-recommended therapies without an official diagnosis. After weeks of talking and working with them I finally asked point blank, “What type of doctor do I need to take my daughter to in order to get a diagnosis?” and the insurance agent replied, “I don’t actually know.” I knew right then I had to find another route.
I asked family and friends, contacted the local school district, googled community programs, and asked anyone and everyone I thought might be able to assist in finding us help. I went through many channels. I requested a neurological assessment through my pediatrician’s office and by God’s grace the insurance granted the request. There are only two Pediatric Neurologists in our area and we waited over 45 days for an appointment, but it was worth it. I completed a questionnaire, the doctor spent time with me, and spent time with my daughter. Then he told me “your daughter has PDD.”
My reaction to the Diagnosis
When the doctor was done he told me that my daughter had “PDD.” I instantly started crying. I had never heard of PDD and that unknown acronym scared me more than if he had said “Autism” because at least then I would have understood what was going on with my baby. I had no idea what I was dealing with when he said “PDD”. I think the doctor was a little shocked by my reaction.He instantly said, “No, that’s a good thing.” He explained that PDD looked like Aspergers or Autism but he felt that with about a year of Occupational therapy, Speech therapy, and Behavioral therapy as well as traditional preschool, community activities such as gymnastics, and structured play dates that my daughter would be fine within 1 year. I was still in a bit of shock. I still did not get it. But the Neurologist reassured me that with a little extra help from the therapies everything would be fine soon. A frien,d whose daughter had been diagnosed Autistic and then later rediagnosed as PDD-NOS,
.explained it as “the catch all” diagnosis for when doctors are not quite sure what is going on but it is not full Aspergers or Autism. It makes sense that such a varied and complex neurological issue would require a “catch all” for children like my daughter who exhibit some but not all of the issues associated with Autism Spectrum Disorders.
What Life looks like Today
We are now doing Occupational Therapy (OT) 1 hr/week, and looking for a speech and ABA therapist for a soon to be total of 10 hours of therapies per week, Preschool is starting soon, playdates, Sunday school, and more work at home as per the instructions of the therapists. We have not put her into any sports yet as we do not want to overwhelm her by introducing everything all at once. Plus, let’s be honest… this is overwhelming for mama too. Each day we see baby step improvements as she learns new skills like looking people in the eye when speaking to them, or waving hello and good-bye. Each step is a step in the right direction. (Below is a photo of Little Girl in Occupational Therapy or OT, learning how to use scissors.)
If you and your child are experiencing a similar story, below are some resources that may be helpful:
Regional Center – Help for children 0-36 month
Local Occupational or Behavioral therapists or therapy centers – many can point you in the right direction
School Districts – Help with educational assessment and help within the school system
Pediatric Neurologist – able to determine if children are on the Autism Spectrum
I hope and pray that our story can help one person to find the resources and help they need for their child. It may feel like it, but please know, you are not alone.
After my daughter’s diagnosis and entry into therapy we began to see many improvements, slowly. But our biggest leap forward came with the elimination of diary and gluten from her diet in May 2013. When we decided to try eliminating gluten and dairy my husband was beginning the first of four weeks working away from home. So mama went this on her own. But it was so worth it. Within 3 weeks I saw a huge improvement. But as my daughter’s primamry care-giver (being with her everyday) I was not sure if this was such a big improvement as I thought… would anyone else notice? 4 weeks after being Gluten-Free and Dairy-Free my husband came home. He was in shock. He said “She is a new child.” And she was. The melt-downs, difficulty with transitions, and general over-emotional side of my daughter’s personality was gone. She was now an even-keeled little girl. Obviously she was still only 4 so we dealt with tired tantrums and typical preschool-aged emotions, but the exaggerated emotion we had seen was all but gone. We have continued with a GF and DF diet for almost 2 years now. There have been a few instances were a friend, relative, or caregiver have unknowingly given my daughter gluten… and we all see the effects within hours. This usually comes in the form of what I call my little girl becoming “a PMSing 13 year old girl” – tears, emotional mood swings moment to moment, and the inability for her to calm down even when she mentally realizes that her emotions are in control and hse does not want to be out of control (much like a 13 year old girl experiencing PMS.) I know many people believe that GF is a fad and that non-celiac patients are simply experiencing a placebo effect, but my daughter is anecdotal proof for me that a GF diet works for children who have behavioral issues like hers.
Shortly after publishing this article in August of 2013 we received other news that helped us understand our daughter’s situation more fully. When this article was being written our daughter was in the process of being observed by the local school district for an IEP (individual Education Plan) which determines which services a child with special needs is eligible for. 4 professionals (2 child behavior specialists, an occupational therapist, and a special education teacher) observed my daughter over the course of 3 months: at her preschool, on the playground, and through individual testing. In the end they determined that my daughter had been misdiagnosed. They presented my husband and I with a 45 page document detailing her testing scores and their determination. The determined that my daughter was highly intelligent and was also suffering from culture shock. We moved from Roatan, Honduras to the US in December of 2013. It never crossed my mind that she might be experiencing culture-shock… we had moved “home”… but the US was not the home she knew, or the culture she knew, it was familiar to my husband and I but not to her. They reasoned that perhaps the behavioral issues we had seen while in Roatan was dietary issues (the Gluten) exaggerating normal 3 year behavior and that the additional stress of the culture shock upon moving back to the US caused her to become very introverted while she figured out life in the US. They suggested we give it a few months, as we had seen significant improvement with the Gluten-Free diet, and that more time in the US would enable her to “come out of her shell.” Sure enough, that is exactly what happened. Today my daughter is happy, healthy, and well-adjusted
*I am not a doctor or medical professional. This post is not intended to diagnose or treat any condition. Please consult medical professionals before pursuing any course of treatment. All opinions are 100% my own.