So if you are like me, you know deep in your Mama gut when something isn’t quite right with your child way before others do. Whether you are ready to accept it or not, you have concerns. I know some people can be in complete denial, compartmentalize or stuff their worries, but this was not me. I felt there was something wrong but had no clue how to get answers or to find her the help that I couldn’t deny she needed. I had gone to our family doctor in the past and expressed my concerns about her not meeting the verbal and fine motor milestones during her well child checks. I am not faulting him necessarily because, to be completely honest, most physicians have little to no clue about sensory integration issues and how the can reek havoc in a child’s life. They may have heard the name but are not really sure what it looks like in a patient. I also feel some grace is needed for those pediatricians and family doctors that are the gate keepers so to speak to weed out the overly cautious parents. There is a fine line between someone who is over-reacting to their child’s quirks and someone who honestly needs it, and I understand that. That being said, we switched doctors because ours left the practice, and our new doctor took my concerns very seriously. It may have helped my plight a little because I was hysterically sobbing when I went in to meet with him. Those who know me, or have read my previous posts, know that this is just who I am. We were in crisis mode and I needed help and I had no idea where to go other than her doctor. I knew that Ellie’s behaviors were inhibiting her and our family’s daily function. So her doctor referred us to a therapy clinic.
Ellie’s initial referral was for speech therapy at a therapy clinic. A speech therapist goes through a list of questions for the parents to answer about family history, hospitalizations, birth information and a laundry list of other things to get to know all about your child. The more info they learn, the better equipped they are to make a decision about your child’s needs. No matter what the initial referral is for, speech, occupational therapy or physical therapy, the therapist uses games, toys and other fun ways to gain the info they need to make a decision on your child’s future treatment.
At Ellie’s first evaluation she spent the majority of the time hiding under the table or running from one wall of the room to the next bouncing off of them like a pinball. It did not go well as far as I was concerned. She got to see some of Ellie’s worst behavior so I thought surely I was finally going to get the help Ellie needed. At the end of the evaluation they said that she was displaying normal behavior for a child her age and that she was just under the line for getting help for speech. WHAT???? How could that be right? I had seen her with her peers and she was socially behind at the very least. Her fine motor was behind for her age according to her teachers and this therapist said she was fine. I left there so discouraged, when going in I finally had hope that we were finally on the right path. So now what?
After a failed evaluation I reached out to a play therapist who was in the same building. I had no idea if this would help but at this point I was willing to try anything. She had a three month wait list. I was put on her cancellation list and was willing to show up with little to no notice. We finally got an appointment to see her and after a couple months I expressed my concern with the fine motor issues and her other behaviors. She recommended that I have her evaluated again by a different Occupational Therapist specializing in Sensory. I gladly agreed and we went to the evaluation still hopeful for him to see what I was seeing. Once again she was a pinball bouncing from wall to wall and throwing herself on this padded table in the room. Except this time he saw it and he knew exactly what was going on with Ellie. Praise God! Someone knew how to help her. The reason I went in to the details of the steps we went through to get help is that I want you to know that there is help out there for your child and sometimes it takes several failed attempts to get to the right people to help them. In the end, I am extremely grateful we ended up with the occupational therapist we did. The struggle to get to him was worth it. The key was finding an OT that was trained in sensory.
My goal is to try to help you streamline your walk through this process. I hope that this info will help you to figure out what to do if you decide your child may need help. To gather this info I reached out to Ellie’s team of therapists for help.
Tips From Ellie’s Team of Professionals
I gathered this information from Ellie’s Occupational Therapist and Behavior Consultant. Hopefully this will help you figure out what to do if you decide your child may need help.
Go to your pediatrician and ask for a referral to a sensory-based Occupational Therapy Clinic. Other common referrals to ask for depending on your child’s issues: Speech, Physical Therapy or a Play Therapist. Sometimes you will get lucky and your doctor will just give you a referral. Other times they may have you fill out questionnaire.
My tips for filling out the questionnaire:
They may have you fill out a questionnaire to weed out those who don’t need it. Be brutally honest. If you are unsure lean toward the answer that seems worse. I am NOT saying lie. But, for instance, my questionnaire asked if your child could draw a circle. Ellie had never really drawn one. Could she? Who knows? But what I did know is she seemed behind her peers on writing and drawing. So, I chose to answer no. Just be critical of your child’s abilities. Hopefully after this, your doctor will send over the referral to a therapy group in your area. The referral is the only way to get that initial appointment for an evaluation. In my opinion, I would rather have a qualified therapist weed her out rather than my pediatrician who sees her for 15 minutes at a time.
Getting the Right Referral For Sensory Needs
If you suspect a sensory issue you need to do a bit of research. Typically your pediatrician will have a relationship established with a clinic they like. That clinic may or may not have therapist with the specialized training your kid is going to need. Believe me, I had to figure this out the hard way. It may benefit you to call around and ask some questions.
Here’s what you want to ask:
- Are any of your OT’s specifically trained in Sensory Integration? If they have been trained by the STAR Institute (Dr. Lucy Miller) or University of Southern California (Dr. Aryes) you know they are highly qualified. An OT who receives continued training, goes to conferences, workshops and/or is being mentored by an expert should do fine. (Sensory can be tricky, your financial investment in therapy will pay off if you have a qualified therapist.)
- Do they have the SipT certifcation? This means that they are certified to give the Sensory Integration and Praxis Test and pretty much lets you know they are well trained.
- Does the Therapist who is doing the evaluation and the Therapist who will be doing the weekly therapy both have sensory specific training? You want to listen carefully here to make sure the person evaluating is qualified to look for sensory issues that affect every day skills (like transitioning from one activity to another), and that the OTR (Occupational Therapy Assistant knows how to work with your type of child.
Step 2– Evaluation
- Private Therapy
- Every school system offers free evaluations and services for kids 3 years old and up (if they qualify.) Each district has several programs and therapy options for kids in need. Many Pediatricians do not know this! If your 2.5 year old is having trouble forming words, is not talking or had words and regressed, you will probably benefit from an evaluation. If your child is showing low to moderate function signs of Autism, you may benefit from an evaluation.
To request an evaluation from the School District:
For Speech issues only: Call the Elementary School you are zoned for and ask to speak with the Speech Pathologist. Tell her what is going on and he/she will walk you through the process
For behavior concerns, major motor skill delays (can’t dress themselves) or Medical Conditions such as Down Syndrome, Autism (or concerns of), or Cerebral Palsy, call your district’s central office and ask for the Special Education Department. Tell the Coordinator that you would like an evaluation. He/She will ask you what symptoms you are noticing and be brutally honest. Regression of words, will not socialize with other kids, has difficulty transitioning to another activity.
My advice on the school system:
All this being said, I don’t want to knock the school system process, but kids with SPD like Ellie, fall through the cracks a lot of the time because they are high functioning enough to not get services. They can also make you feel crazy for assuming your child needs help. Keep in mind that the school system gives services based on the child’s learning needs. If they don’t feel that their “disability” or “learning differences” inhibit their ability to learn, they will not provide services. This is where getting another diagnosis helps. If not, you may be in for a fight to try to get your child the help they need. Your child may not qualify for inclusion Pre-K or PPCD. PPCD is a preschool program for children with disabilities. But don’t give up if you disagree with their recommendations. If the school system doesn’t qualify you it doesn’t mean your child doesn’t need help. It just means you will have to go to a private clinic for a little while until your child gets back on track, which is the way we had to go.
If your child is already in school and you suspect they need help start with the school counselor and express your concerns. They will go to the teacher and administration to discuss the next steps for you and your child.
Step 3– Behavioral Consultant
If all of this is overwhelming to you, you may want to consider hiring a Behavior Consultant. For us, it is an amazing piece of this confusing puzzle that has made a huge difference. If you are in Texas, Behavioral Health Consulting is an amazing way to get guidance through not only this process, but with how to help your child at home. This has been a huge blessing to us. I have been able to learn so many ways to help Ellie at school, home and how to navigate this whole process. Marisa Rodriguez our consultant and owner of BHC. She works with parents and children in many states. She also helps advocate for your child at school for ARD meetings or any other meeting regarding your child’s behavior. She is an excellent resource for all things regarding sensory and problematic behavior in children.
I hope that some of this is helpful for those people who, like me, had no clue on where to start. Feel free to contact me with any questions on this topic and I will do my best to answer them.