Advocating for Your Child with Special Needs (By Anshu Basnyat, LCPC)

    Many students across the United States will start their new school year next week. It is a time of full of excitement to meet new teachers, make new friends, and learn new things! While this may also be true for parents with children who have special needs, but it is also intertwined with feelings of fear and anxiety about what the new school year will bring for their children.  This is doubly true for me since I now have two children with special needs.

    My regular, blog readers know that I have a three year old daughter who was born a micro preemie with many health complications. She is also hard of hearing and has been wearing hearing aids since she was one year old.  Well now, my seven years old son was diagnosed as being deaf in his left ear over the summer. Advocating is not a new thing for us. However, advocating for a second grader looks quite different than for a toddler.

    One or more accommodations in the classroom will be necessary for children with special needs. An example may be of what educators call “preferential seating,” which my son will undoubtedly need in the classroom.  This is not a big deal for my toddler daughter because the class sizes are smaller and more staff is available in the classroom to assist with whatever is necessary.  However, preferential seating will be a challenge to implement for my son.  On paper, preferential seating seems like an easy accommodation to make after you figure out the location of the seating (left front for my son). Practically, this is much harder to implement and this is why: a dynamic and effective teacher is constantly moving around the classroom!

    Advocating for the accommodations and making sure they will be implemented will be challenging, but the most significant difference when advocating for a toddler versus a school-age child is the support system that is available.  With the very young, there is a team of professionals who are working with you in your home, school, and in the community to guide you along your child’s development. For our daughter, this meant we had the support and expertise of the speech and language therapists, special education teachers, ASL teachers,occupational therapists, physical therapists, audiologists, just to name a few.  Once they reach school-age, the parent is pretty much on their own to get the advocacy ball rolling and staying afloat along the way.  The parent has to be the driving force and the child’s strongest advocate.  There will be high points and there will be low points along this journey. Below are strategies to keep in mind when advocating for your child with special needs.  I will use my son’s hearing problem as an example to illustrate the points.

7 Strategies When Advocating for Your Child

1. Take referrals seriously.  There are a number of ways a concern about your child’s development can be raised. For our son, he was the one who initially raised the issue and soon after he failed his hearing screen at school. The school nurse sent a referral note and we immediately contacted the appropriate professionals. We could have easily ignored the note and gone about our business, especially considering that he had been doing extremely well academically. Instead, we took the referral seriously.

2. Identify the special needs.  Once a referral is made, there will be a series of tests or evaluations that need to take place in order to properly diagnose a special need.  The nurse sending a referral note that he failed the hearing screen for his left ear is not enough.  I say this because the identification process is time consuming, tiring, and frustrating.  It will become so easy to give up and not follow-through with subsequent recommendations.  You might even have to seek second opinions if things do not sound right to you.  Without completing this identification process, you cannot move forward in the advocacy.

3. Gather pertinent documents. As a trained clinician, we have this mantra we follow that says “if it’s not written, it didn’t happen.”  Make a file for your child’s medical record of all the referrals, test results, and recommendations.  If possible, have electronic copies of them which will come in handy later on in the advocacy process. Organizational skills will come in handy at this point.

4. Contact the school principal in writing.  After you’ve gathered all of the pertinent information from the professionals, you are now ready to contact the principal.  The correspondence should be in writing and you should include the medical documentation (this is why the electronic copy becomes convenient). This will speed up the process and you will have a "paper" trail to refer back to.

Also, keep in mind that timing is important.  This is just my opinion, but I do feel that sometimes contacting the principal too early may not necessarily work in your favor.  For example, if you contact the school too early, let’s say early in the summer, you might not get the response you want right away. Moreover, if the timing is off you might actually risk getting the attention you deserve.  In other words, sometimes “the early bird does not always get the worm.”  For my son, I had all of the documents ready about a month ago, but it did not feel like the right time to contact the principal then.  Even though my super-organized, early bird husband insisted I do.

This week was back to school for staff so I figured this is a good time to shoot an email to the principal. Sure enough, in less than an hour the assistant principal calls me to address of my concerns and schedule a meeting to discuss what kind of accommodations would be warranted for our son.  Of course I did not gloat about this to my husband! 

5. Be prepared for the meeting with the school.  Make sure you and your partner discuss the talking points in advance and write them down.  Those meetings can easily get sidetracked and become emotionally charged so it is crucial you have a visual reminder to keep you on track.  You want to be able to identify the special need and ask for concrete accommodations.  Advance research will be key. Also, take at least two copies of the documents you emailed earlier for convenience, just in case they do not have them at hand. 

6. Advocacy does not have to be adversarial.  Really, you can effectively advocate for your child without having to get into an emotionally charged battle! Keep in mind that the teachers and  the staff also want what is best for your child.  If you are not convinced then consider how the school would look in terms of reputation if their students do not perform well.  Working within the system is a much better and effective approach than working against them.  This will create a much better working relationship with the school and at the end of the day will benefit your child.  However, again worth mentioning that, we as the parents, have to be the best and strongest advocates for our kids.

7. Teach your child self-advocacy.  We have talked with our son about self-advocacy and what that means. However, we also explain to him whenever we advocate for him so he can learn from our examples not only to self-advocate, but also to be proud of whom he is no matter what challenges he may encounter.  The look on his face was priceless when I told him that his assistant principal had called!