There is a time in the life of many parents when they know there is something wrong or not quite right with their child. At first they might ignore the problems — such as when their child acts out more than other children their age or is unable to share or play — thinking they are worrying for nothing. But, intuitively, they know something is not right.
It is when they are at that point of recognizing there might be a problem when they feel lost and very alone because they have no idea who to see and where to find help.
I have been in that situation and know the frustration and loneliness. I use the term loneliness on purpose because parents (and I include both the mother and the father in this description) are far too often told by well-meaning relatives and friends to simply love the child and stop worrying because “they’ll outgrow it” whatever “it” is.
Well, all too often, our children don’t outgrow their physiological, development and/or behavioural difficulties. The good news is, of course, that most parents do find help, eventually.
However, “eventually” is sometimes not fast enough. The purpose of this article is to encourage parents to become their child’s advocate immediately and never, just never relinquish that advocacy to anyone else — including the medical or school systems.
Here is a list of some of the things a parent can do, with links wherever possible. No one way is right for everyone, but at least this list is a place to start. And, parents need to remember to be doing more than one thing at one time. In other words, you can make an appointment with a specialized pediatrician AND be visiting the Learning Disability Association in your district at the same time.
Oh, and one more thing. There is no perfect solution to every problem. Compromise and some kind of help is better than none. So, parents need to be prepared to try whatever is available — while waiting for other treatment or curriculum options.
(1.) Visit your family doctor or pediatrician.
He or she can rule out disease, infection and/or any genetic or other physiological abnormalities. He or she can also prescribe medication as a last resort if that is necessary. However, if the physician simply tells you not to worry, be firm. Have the specifics at your finger tips. Don’t take no or wait for an answer. For example, if a infant or toddler is not developing according to regular guidelines, keep a record and share that information — such as when a baby sits, rolls over, crawls (if at all), stands and speaks. Or does the toddler scream or shake their hands at the least bit of provocation? In other words, be prepared and expect answers.
(2.) If your child is school-aged, visit his or her school.
This section was added after posting. As both Mac and Northern Ontario said in comments, sometimes a classroom teacher and/or a school resource teacher can offer helpful advice. When that happens, everyone can benefit. However, since the school system has a different agenda and is under financial constraints, parents need to be aware that there may be a conflict of interest. And, frankly, parents who are really good at advocating for their child or children are sometimes seen in a negative light by school administrators. That said, parents should always remember that it really doesn’t matter what the principal thinks as long as their child is getting the help they need. Of course, politics enters into this dynamic as well. There is an old saying “you can get more with honey than vinegar.” That certainly applies in this situation. While these comments are more likely to relate to public and Catholic schools, more will be said in item (5.) regarding looking at the option of a private school — where a parent/teacher partnership made be better.
(3.) Visit the local Learning Disability Association or a related organization.
This is key. I was involved with the Niagara area LDA for many years, both as a parent and as a professional. While they don’t make specific recommendations, they have lists of the types of resources and professionals a parent may need. And, often they will make a referral. I can’t stress this option enough. Make an appointment. What parents will learn will help immensely. Here is a link to my feature page on a wide range of such parent “Special Education” resources.
(4.) Act on physician and LDA recommendations.
Never feel embarrassed or pushy. This is your child we are talking about. Too often pre-schools and regular schools will give parents that impression. Ignore them. Be polite but firm. Have all your facts at your finger tips. Do not blame. Just insist on the help your child needs. Remember, that in ten or twenty years you will still be helping your child and those educators will be retired and have long forgotten about you. In other words, think long term.
(5.) Pay for private testing/treatment/schools if necessary.
If your physician or school system has your child on a waiting list for testing or specialized treatment, find out the name of a registered psychologist who does private testing and/or a behavioural therapist who offers private ABA (applied behavioural analysis treatment for severe autism spectrum disorders). And, even if you have to pay with post-dated cheques or have to borrow money, if at all humanly possible don’t wait. Or, if that option is just not possible, visit the various social services groups to see if they can help — like the Lions, Kiwanis, Rotary, and so on. It can take years, valuable time wasted, if you put all your eggs in one basket. The school systems do what they can with the money they have available, but they can’t be all things to all people. So, parents need to be their own advocate. Some major medical plans through employment also pay a portion of private testing and treatment — as long as there has been a referral from a physician. Lastly, as sor said in a comment, consider a private school.
(6.) Join a parent or disability support group.
Join a parent support group of some kind, be it for learning disabilities, autism, attention deficit, cerebral palsy or Tourette’s. Talk to other parents. Find out what they are doing. Tell them what you are doing. Be involved. Be known. If possible, be a spokesperson for a group. Share your experiences with other parents at meetings or even conferences. Word of mouth (and now the blogosphere) is one of the main ways for parents to find out what they need or can do.
(7.) Read and become knowledgeable.
There are lots of books and articles available on line. Also I mentioned above, parents can begin the process by checking out all the links on the “Special Ed Links” on my header bar.
(8) Don’t wait on anyone else.
Waiting! One of the most frustrating things for parents who are trying to find out what may be wrong with their child, or what can be done to help them, is the waiting. Sometimes there is no other option but to wait. Whatever the case, take other steps that you can do. Always remember you are your child’s advocate. So, while waiting, get started on item 6. above by gathering together all the necessary information you need to move ahead — test results, special education programs that might be available, where ABA therapy is being offered, and so on.
Notes: (1) This list is for information only and is certainly not diagnositic or definitive. In other words, it is just my opinion. As such, I would like to invite parents and professionals to leave a comment or e-mail me with other items that I can add to the list in order to help parents when they don’t know what to do.
(2) I have one caution however. Sometimes parents are preyed upon by so-called professionals who say this method or that method will work — for a price. And, sometimes parents are so desperate for help, they will try anything. Many of those situations can be avoided with proper research and being part of a parent support group — to talk things over. And, as Northern Ontario Tory wrote in a comment, keep detailed records of all the meetings and school conferences attended, who were there, what was said and what was promised.