HELP! When parents don’t know what to do…

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.

14 thoughts on “HELP! When parents don’t know what to do…

  1. Depending on the school, teachers can be a wonderful resource. Both of my kids have learning disabilities which were not noted at the French immersion school where they started their education. This might have been because the first years of French immersion focuses on developing spoken language skills, putting less emphasis on written work.

    When we moved and were unable to get the kids into French immersion, the kids were entered into the regular program and their teachers noticed problems within days, literally. We paid to have them assessed professionally and used those assessments to leverage for IEPs and resource availability.

    Even to this point, the schools don’t want dedicate resources to them since neither is failing. If either started to fail, resources might be dedicated. Otherwise, too bad, so sad.

    To my eyes, there’s a huge difference between flourishing and not failing. For those with learning disabilities, the school system rewards failure and ignores success.

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  2. Depending on the school, teachers can be a wonderful resource. Both of my kids have learning disabilities which were not noted at the French immersion school where they started their education. This might have been because the first years of French immersion focuses on developing spoken language skills, putting less emphasis on written work.

    When we moved and were unable to get the kids into French immersion, the kids were entered into the regular program and their teachers noticed problems within days, literally. We paid to have them assessed professionally and used those assessments to leverage for IEPs and resource availability.

    Even to this point, the schools don’t want dedicate resources to them since neither is failing. If either started to fail, resources might be dedicated. Otherwise, too bad, so sad.

    To my eyes, there’s a huge difference between flourishing and not failing. For those with learning disabilities, the school system rewards failure and ignores success.

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  3. Good points Mac. I wondered how they were doing. You might try private tutoring — either with a high school student who is a peer or through the local LDA chapter — who should know some good ones. Some retired teachers do such tutoring for about $25.00 an hour (my husband does some of that for example.) If you can afford it, it’s worth every penny to, as you say, reward success.

    Your right though, special education resources are usually only provided for the students who are failing. In fairness to the board, there are only so many dollars to go around and those who need the help the most usually get it.

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  4. Good points Mac. I wondered how they were doing. You might try private tutoring — either with a high school student who is a peer or through the local LDA chapter — who should know some good ones. Some retired teachers do such tutoring for about $25.00 an hour (my husband does some of that for example.) If you can afford it, it’s worth every penny to, as you say, reward success.

    Your right though, special education resources are usually only provided for the students who are failing. In fairness to the board, there are only so many dollars to go around and those who need the help the most usually get it.

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  5. Excellent post Sandy!

    I have a daughter with Aspergers and it was a very long ordeal in obtaining a definitive diagnosis. Overall, the medical system was very helpful, gradually testing and ruling various things out before moving on to the next possibility. But it is very stressful for parents. A support group made the world of difference for my wife; being able to talk to other parents that really do understand what you are going through eliminated a sense of isolation.

    The education system is by far the most difficult obstacle to deal with, at least in my own experience. (BTW, this is not meant to bash all educators, but there are some I have encountered that I wonder why they chose the profession; there are also those that are more than you could ever hope for!) I understand the limited resources and funds available to deal with a wide variety of issues…….but it was very disheartening to spend an entire school year working with the teaching staff (in conjunction with various outside agencies) to educate / inform them, only to endure the same battles the next year, and the next, and so on. At times, it is vital to be very firm / forceful and not let certain people in the system trample all over you. The buck does not stop at the school principal; you can and should bring concerns higher up the food chain to achieve results when necessary. But in all cases, it is vital to maintain a record of meetings, issues, calls, etc. in order to be taken seriously.

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  6. Excellent post Sandy!

    I have a daughter with Aspergers and it was a very long ordeal in obtaining a definitive diagnosis. Overall, the medical system was very helpful, gradually testing and ruling various things out before moving on to the next possibility. But it is very stressful for parents. A support group made the world of difference for my wife; being able to talk to other parents that really do understand what you are going through eliminated a sense of isolation.

    The education system is by far the most difficult obstacle to deal with, at least in my own experience. (BTW, this is not meant to bash all educators, but there are some I have encountered that I wonder why they chose the profession; there are also those that are more than you could ever hope for!) I understand the limited resources and funds available to deal with a wide variety of issues…….but it was very disheartening to spend an entire school year working with the teaching staff (in conjunction with various outside agencies) to educate / inform them, only to endure the same battles the next year, and the next, and so on. At times, it is vital to be very firm / forceful and not let certain people in the system trample all over you. The buck does not stop at the school principal; you can and should bring concerns higher up the food chain to achieve results when necessary. But in all cases, it is vital to maintain a record of meetings, issues, calls, etc. in order to be taken seriously.

    Like

  7. Northern Ontario Tory — What you just wrote is exactly what parents needs to hear. It’s also why I didn’t include “educators” or anyone in the education system” as people to talk to and listen to. While I am sure many teachers or special education consultants would be helpful, they have a conflict of interest. Their first duty is to the system and what programs and/or resources are available.

    I didn’t include other special needs associations, apart from the Learning Disability Association, because each group has its own procedures and LDA can refer a parent to another group if that is necessary, e.g., the Association for Community Living (which also helps with tourettes and prader willi syndrome).

    But, I haven’t come across a parent yet that didn’t experience the initial panic and fear, then the isolation and frustration.

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  8. Northern Ontario Tory — What you just wrote is exactly what parents needs to hear. It’s also why I didn’t include “educators” or anyone in the education system” as people to talk to and listen to. While I am sure many teachers or special education consultants would be helpful, they have a conflict of interest. Their first duty is to the system and what programs and/or resources are available.

    I didn’t include other special needs associations, apart from the Learning Disability Association, because each group has its own procedures and LDA can refer a parent to another group if that is necessary, e.g., the Association for Community Living (which also helps with tourettes and prader willi syndrome).

    But, I haven’t come across a parent yet that didn’t experience the initial panic and fear, then the isolation and frustration.

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  9. Great post. Another suggestion is to look for a smaller private school. In Kamloops we have a Catholic and a Christian school. Many students, including my own, switched out of the public system into one of them even though we are not religious.

    The smaller classes and the structure make a huge difference. Not to mention that the teachers are not union and are there for assistance from 8am to 4:30 or later.

    We found the tuition was quite reasonable and less than we would have had to pay for tutors.

    My older daughter has sensory integration problems and she flourished and my younger daughter was quite bright and she loved it as well.

    The up side was also the religious teaching that they were exposed to.

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  10. Great post. Another suggestion is to look for a smaller private school. In Kamloops we have a Catholic and a Christian school. Many students, including my own, switched out of the public system into one of them even though we are not religious.

    The smaller classes and the structure make a huge difference. Not to mention that the teachers are not union and are there for assistance from 8am to 4:30 or later.

    We found the tuition was quite reasonable and less than we would have had to pay for tutors.

    My older daughter has sensory integration problems and she flourished and my younger daughter was quite bright and she loved it as well.

    The up side was also the religious teaching that they were exposed to.

    Like

  11. Thanks sor. I don’t know why I didn’t include the notion of private schools because that is essentially what we had to do with our son. As I recall, we had to take out a second mortgage at the time, but in hindsight, it was the best decision we could have made at the time.

    I will add that to my list tomorrow as part of paying your own way if you have to –re testing and treatment.

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  12. Thanks sor. I don’t know why I didn’t include the notion of private schools because that is essentially what we had to do with our son. As I recall, we had to take out a second mortgage at the time, but in hindsight, it was the best decision we could have made at the time.

    I will add that to my list tomorrow as part of paying your own way if you have to –re testing and treatment.

    Like

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