Resources

This section is designed to help current (or soon-to-be) special needs families that are:

• struggling to determine if they should get their child tested
• next steps once that decision has been made
• early post-diagnosis, seeking the best therapy plan for their child
• battling private insurance or trouble acquiring/applying for TEFRA
• IEP hurdles
• becoming your child’s strongest advocate

Please keep in mind that while some things are nationwide programs, services or terms, many things are state-wide. I will give you everything I have learned from South Carolina, but I strongly encourage anyone looking for more specific information to check this link (putting in your state): https://www.autismspeaks.org/resource-guide

Additionally, reach out to your local Autism Foundation, join local Facebook Autism groups, etc. They are a wealth of state (and even county) level information.

Here are some terms that will help:

• ASD- stands for “Autism Spectrum Disorder”. The term “Asperger’s” (which just meant “high functioning” or a less severe form of autism) has officially been struck from the medical field now. Every single child or adult with a diagnosis is just “ASD” and they fall at various levels on spectrum.
  
  
• SPD- stands for Sensory Processing Disorder (formerly known as Sensory integration dysfunction). This is a neurological condition where the brain has trouble receiving and responding to information that comes in through the senses. The sensory information gets “mixed up” in their brain like a traffic jam and their responses are inappropriate for the setting or situation. *On its own, it difficult to diagnosis this, and it often goes untreated and makes the child appear just be a brat or unreasonable/undisciplined. **This is commonly found in ASD children as well. If you think your child might possibly suffering from this, I would highly recommend you read the book, The Out of Sync Child.
  
  
• O.T.- stands for Occupational Therapy. It helps work on cognitive, motor, physical and social skills. From the Austim focus, it helps with playing skills, self-care, eating, and sensory issues. If a child suffers from gagging on food constantly, sensitive to being touched, won’t brush teeth, etc, that’s where an Occupational Therapist would help a great deal.
  
  
• S.T.- stands for Speech Therapy. This would be conducted by a speech pathologist and focus specifically on the childs language and communication. This is the easiest therapy to find, mostly covered and will help tremendously. Once a child with ASD is able to communicate better, it helps tackle the issues at a more rapid pace. MOST all public elementary schools offer ST. There are 2 types: receptive (understanding what is said to the child) and expressive (difficulty putting their words together, limited vocabulary).
  
  
• ABA Therapy- stands for Applied Behavioral Analysis. This is BY FAR the most difficult of the therapies. This is a method of therapy that changes or improves specific behaviors in a child. The goal is to increase helpful behaviors and decrease destructive behaviors that hinder communication and learning. Additionally it teaches skills that will give the child independence and improve attention, focus, social skills, memory and academics. Its driven by very strict rules/principles so that the child can learn to adapt their behavior. Its extremely intense, normally done in-home, and depending on the severity of the ASD, sees rapid results. Its also the most expensive therapy and the least covered by insurance. Most public schools will also have ABA offered with testing results, but its very different from private ABA. This combines OT and ST in it as well. If you can only do 1 for either finances, time constraints, etc, DO ABA. 
• BabyNet- an inter-agency early intervention system for infants and toddlers (up to 3) with developmental delays. This would fall under your state’s DHHS department and may be called something different. Basically this is the first step in getting your child screened for delays or a diagnosis. This is a federal tax-payer funded program, so it does not cost! For us, we didn’t use the BN step, since Jude was only 3 months from turning 3, they were completely unresponsive (this is very common!) They know your child isn’t going to qualify for their services soon, so they put no effort or urgency into taking the next steps. I would strongly recommend if you child is 2.5 or older you skip BN all together and start with Child Find (see below).
  
  
• Child Find- this is basically BabyNet for anyone ages 3-21. This is part of the federal law called IDEA. If your child is home-schooled or in private school this service is still available to you. This will be facilitated through your local public school system and is also tax-payer funded, so its at no cost to you. They will conduct a series of evaluations to help determine the developmental delay. **Import to note– they CANNOT diagnosis a child–even if the data they produce may clearly show the issues, you will still have to make an appointment with developmental pediatrics to get actual documentation and diagnosis paperwork (get this referral from your PCP or pediatrician).  The CF step isn’t necessarily “fast” (about 2 months) but its very thorough. They will also write your child’s first IEP (see below).
• IEP- stands for Individual education plan. This is a legal document that serves as a map for your child’s needs, goals, and instructions to the school to set the child up to succeed. This can range from extra testing time required, to receiving a # of hours of speech, to length of time on a bus. If its in the IEP, the public or charter school MUST follow it (this is not applicable to private schools). This is nearly the #1 issue that families with special needs children struggle with on a constant and never-ending basis. We have not had much trouble in this area as Jude is still very young and we’re extremely pleased with his current school, but I read countless and never-ending complaints from other moms and shocking accounts of the total disregard of the IEP and their child. If you are struggling in this area please engage a family advocate immediately and take them with you to the IEP review meetings. Unfortunately this seems to be an area where you only get traction the louder you yell. 
  
  
• PIC- stands for Preschool Intervention Class. Jude is currently in a PIC and it has been tremendous for him. A PIC is normally capped at a small number of students and contains either only special needs students or (like in SC) they are allowed to have 2 mainstream kids in the class as well to provide a peer mix. This is only until they turn 5. As in the the case with Jude’s class, they typically receive PT, OT and ABA “type” activities all day long. Its intense. If you feel your child needs this–PUSH FOR IT–they will typically not just offer the PIC on their own. Ask to observe, and while you don’t want to be annoying or make the teacher feel you’re intruding, go back and observe often. 3-5 years old is the single most crucial time for intervention for your child; if they’re in a PIC, they’re spending up to 8 hours a day there, you better keep a very close pulse on the classroom and the teacher. I’ll be honest, Jude’s PIC teacher and I did not start off on the best footing, and I called for several meetings and made many frustrated phone calls to the principal. Once you communicate effectively on defining your roles you will be better off. I felt that she was overstepping on roles that were mine as his mother, and vice versa. I’m happy to report that we are great now, I truly can’t thank her enough for the changes she has brought about in Jude and am already dreading when he moves out of PIC.  
  
  
• TEFRA (occasionally referred to as Katie Beckett Law). This is the state-funded insurance for disabled children (basically a division of Medicaid but only for special needs children from birth-18 years). This is not based on the parent’s income, but rather the “income” or assets of the child. The must cover all medically necessary expenses for these children. Sounds great right? HA! Getting TEFRA (depending on your state) is a very frustrating process and (in SC) is running about a 6-9 month waiting period to get your approval. There are 2 pieces of the TEFRA decision: disability and vocational rehab. Both pieces together determine your acceptance and approval. Disability is who sends the home visit examiner to your house to ensure the child exists and is in fact disabled in some way. Then, voc rehab pulls everything from your medical records, notes, etc and makes their determination and this is the piece that takes so long. We applied in January and our home visit was early February, so I was excited–don’t be.. That’s the fast piece. The VR piece is what takes months and months of waiting. I will be writing an entire blog post on my TEFRA approval adventure, so you can read more about how I handled ours.