When do you really need a special needs coach or advocate?
Almost anyone dealing with the needs of a disabled child would probably benefit from the assistance of a special needs coach; if only to have someone to listen when you are frustrated, someone to provide some guidance when you are overwhelmed, or someone to coach you through feelings of despair.
But, there are particular situations where having a special needs coach is important for you, for your child and for your family. This newsletter will discuss some of the situations and why you will want to find a special needs coach to help you address these particular situations.
Often people tell me they’d really like the services of a special needs coach, but their budget is simply too tight to accommodate it. These individuals need to remember that an investment in prevention can reap huge profits in terms of avoiding stress, aggravation and thousands of dollars in subsequently attorney’s fees trying to remedy situations that could have been avoided. If you have a special needs child, visit your budget and find areas you can cut expense, so you can access this important resource when needed. In terms of the budget cutting, here are some ideas to consider:
· Contact your local energy company and ask them to come to do an energy audit and give you specific information on how to lower your energy bills.
· If your child receives social security. Contact your local phone company and advise them you want to change your phone line to a Lifeline – which can provide phone service for as little as $3.50 per month.
· If your child is under five years of age, contact your local health department to find out about eligibility for WIC
· Call the local churches in your area to find out if any participate in the SHARE program which permits families to purchase food at significantly discounted rated.
· Consider replacing paid child care with volunteer college students in psychology or special education who may be able to receive college credit for their experience working with your child.
· Contact your mortgage holder to restructure your mortgage for a lower interest rate over 40 years. This gives you flexibility in your budget. When you have the extra funds, pay what you would have been paying for you 25 year mortgage and the extra will be deducted directly off the principal and shorten your terms. When you can’t spare the money, pay the lower rate.
· Consider getting a credit card that offers a good reward – such as free gas cards – for points earned. Then, charge all of your regular monthly bills to this one card and pay it off at the end of the month. This makes for simplified record keeping, a good credit record and gives you free gas every month.
· Consider carpooling to and from work, to and from school, as well as to and from kids’ activities.
· Check into your State’s Health insurance program for disabled children. Sometimes it is worthwhile to take your children off your wok plan and put them on the State’s plan because of lower premiums and lower deductible and co pays.
· If you have a lot of credit card debt, see if you can consolidate it all with one credit card company with a low interest rate. NEVER, however, consolidate it with a second mortgage or home equity loan. Your home is your primary financial investment and should always be protected.
So, now that you have given yourself some financial leeway, does that mean you should run out and hire a special needs coach? Not necessarily. It does mean, however, that if a situation arises that necessitates doing so; you will have some savings in the bank and some flexibility in your budget. Here are some of the situations where it is probably beneficial to hire a special needs coach to assist your family.
When you and your spouse can’t agree on how to deal cope
The divorce rate among parents of disabled children is the highest in the country. Financial and emotional stress, lack of respite, lack of understanding on the part of family members, friends and neighbors, conflict with the school district and an inability to agree on how to cope with all of this are major factors contributing to this problem. The fact is disabilities can take as big a toll on the caregivers as they do upon the disabled. Unfortunately, unless a couple has extremely good problem solving skills and learns how to work as a team to access other sources of support, they become isolated from the broader community and then from one another. A special needs coach can help you get back on the same team and learn to reign in sources of support that you may have been unaware of or those that have drifted away (friends, co-workers, family members) due to a lack of understanding of the problem, the long term nature of your child’s needs, and lack of knowledge about what they can specifically do to help.
While the divorce rate is around 20 percent for families of most disabled children, it has dropped to only 8 percent for families of Down’s syndrome Children. This is because these parents generally receive realistic advice regarding what they can and cannot expect from their children, as well as to the “Down Syndrome Advantage” which refers to the personality and behavior of most children with the syndrome; which is generally compliant and presents fewer problems in practical behavior management than other disabled children. Additionally, schools are better equipped to deal with Down Syndrome Children than they are those who manifest behavioral problems, and thus, parents of Down syndrome children have less conflict with the school district. Another factor is that parents of children with Down syndrome are often older, more educated and married before having children so they generally have a better financial and social support base.
For most parents of disabled, however, there are high levels of marital discord between the partners with feelings of low self-esteem, helplessness, resentment over the excessive demands on time, and the financial burden all strain the marital relationship. Through coaching sessions, a special needs coach can help a couple grieve the loss of the normal child they hoped for and gain an understanding of what they might realistically expect for and of their child. The coach can help both parents find positive ways to attach to and enjoy their special needs child, develop strategies to share the added work and responsibility along with strategies for self-nurturing, learn how to make the important job of educational advocacy an efficient routine, learn how to explore alternatives together and make a joint commitment to a plan of action. One of the advantages of internet coaching sessions for the parents of special needs children is the convenience: there is no need to get a sitter, you don’t have to drive anywhere, and you don’t need to take time off from work. Just schedule your appointment and log on to your computer at the appointed time to speak chat with the coach from the comfort of home in the evening after the children are in bed.
When your emotion is driving your interactions with the school district
If you feel like you are talking to a brick wall or if you feel yourself becoming more and more frustrated because school staff do not take your opinions seriously, it is time to seek out the assistance of a coach. The fact is that while parents are not necessarily experts in education or special education, they are experts in their own children. When you are dealing with a school system that does not respect your assessment of your child’s needs and strengths, it is highly unlikely that you will obtain an IEP that is reasonably calculated to insure that your child make meaningful progress on your own. Remember, when you are hurt, angry or upset you cannot present your child’s case objectively or effectively, thus, it is time to hire a special needs advocate.
When you feel your child is being bullied or harassed
The research is clear that the effects of bullying and harassment upon a child’s level of self-confidence and self-esteem can be long term. Moreover, your child will not learn well when worried about when they will be teased or pushed or shoved. So, if your child is experiencing any form of bullying or harassment by peers, older children or educational staff you need to take immediate action. Talking to the teacher or the principal is insufficient. This is the time to call your special needs coach and to make certain both that your child receives immediate protection and that the root of the problem is addressed. Unfortunately, if you try to address this on your own, you are likely to be dismissed as an overprotective parent. This is why it is important to have someone who can speak with authority about both the effects of bullying and the school’s obligation to protect your child.
When you feel your child is being discriminated against
Your child might be experiencing discrimination by being separated from non disabled peers at lunch. Or perhaps because your child rides a special needs bus they are always picked up later than non disabled peers or sent home earlier. It may be that accommodations are not made for your child to go on the same field trips as non disabled peers; or your child may be excluded from participation in recess because there isn’t an aid available to provide assistance. It may be that your child is excluded from the gifted and talented class because of a specific learning disability in mathematics, or you may discover that your child has been omitted from computer classes because there are no touch screen’s or joysticks which your child can manipulate. It may even be that the teacher doesn’t reward your child with “lunch with the teacher” for good behavior like the other students because your child is incapable of meeting the same behavioral standards as typically developing children. If these or any of a myriad of other acts of discrimination are being perpetuated against your child, it is time call your special needs coach and ask them to arrange an emergency IEP meeting to address the issue. Your coach will guide you through the type of documentation you need to maintain, as well as the right places and ways to complain. The coach will also be the one to confront school staff and demand a resolution so that you, who have to work with these people long term, don’t have to play the heavy.
When you feel your child is developing school phobia
When you begin to notice that your child has a headache or stomach ache or is oversleeping on school days, but not on weekends. When they go to the nurse’s office and ask to be sent home sick; but, seem fine after an hour, it is time to recognize the fact that something is wrong in your child’s school environment. One of the best ways to determine what is stressing your child and creating this avoidance is to have a special needs coach, accompany you to your child’s school unexpectantly. Then, advise the principal that your coach wants to observe your child right now to see how they are functioning in school since they are resistant to attending each day. Do this two or three times, once your special needs coach has a good idea of what is going on, then call for an emergency IEP meeting so your coach can present their observations and a proposed behavioral intervention plan with positive behavioral supports to alleviate the issues causing your child to avoid school. You’d be surprised what you learn in such observations. In my own child’s case, I discovered that the reading teacher was telling children if they didn’t pass the FCAT everyone would call them retarded. That was sufficient to worry my little one so much that she cried for hours each morning before school. In another case, I discovered that even when I was physically present conducting an observation a special education teacher was physically abusive towards an autistic child to the point of hurting him. Needless to say, in the first case, I had the principal and guidance counselor give some training to the teacher and in the latter we developed an appropriate behavior intervention plan with positive behavioral supports and insured the child was not returned to that teacher’s class for the next year as the school had originally planned had intended.
When you disagree with the school district’s evaluations
This is one of the most important times to tap into the expertise of a special needs coach. Frequently parents know they disagree with the school district’s evaluations, but they lack the background to point out the specific inadequacies of the evaluations and to formulate precisely what they need an independent educational evaluation to include. It may cost you a few hundred dollars to have a special needs coach compose this letter of objections and desired resolutions for you, but it will save you a tremendous amount of time and aggravation in obtaining appropriate evaluations.
When you disagree with the school district’s placement
When you know in your heart that the placement your child is in is not appropriate, it is time to get help. Districts traditionally move to one of two extremes, they want to isolate and segregate special needs children to the point that they are stigmatized and socialization suffers, or in the name of “inclusion” they place your child in an alleged “least restrictive environment” that lacks the supports and environmental structure your child needs to succeed. When you protest either placement, parents are often offered another placement that is even more ludicrous than the first. The fact is if the district doesn’t have what your child needs they have few choices: create it, tuition your child to another public school that does have what your child needs, or cover the cost of a private school that can meet your child’s needs. Persuading districts to do what is necessary, however, can require a soft voice and a big stick, and this is where your special needs coach comes in.
When you feel your child has undiagnosed disabilities that the school is not addressing.
Many parents of special needs children wait too long to get help. Partly this is because they have trouble accepting that their child is disabled and the extent to which that impacts on their child’s life and their own. Partly, it is because they believe they should be able to cope on their own. Partly, it is because parents naively trust doctors to know what is best for their children (though physician are trained to treat illnesses not to deal with quality of life and educational issues), and partly because parents make the mistake of assuming that anyone who has chosen to work as an educator likes children and will have their child’s best interest at heart. This is simply not the case; if it were there would have never been a need for congress to write the All Children’s Handicap Act and to mandate that school districts admit and educate disabled children. It can’t be stressed enough that the time to get the help of a special needs coach is as soon as you become aware that your child has a problem. The earlier the coach helps you communicate to the district that you are educated parents who know your child’s rights, the more likely that your child will receive what he or she is legally entitled to and the less valuable educational time that will be lost. You need coaching from day one to help you learn about the laws and to master the skills of effective advocacy which you will need until your child either graduate high school or ages out of the system at age 21. Don’t delay, act now to seek out a professional you feel comfortable with as a resource person to call upon throughout your child’s educational career whenever the need arises.
If your child is in danger of being arrested or suspended or expelled for a crime related to a manifestation of their disability
Many schools have created a school to prison pipeline and don’t hesitate to call the police when your child acts in an unacceptable manner; even if the behavior is clearly a manifestation of the disability. The fact is even if you need an attorney to deal with the legal charges, you need a special needs coach to assist you in getting a manifestation determination meetings so that placement can be re-evaluated, a behavioral intervention plan can be developed or adjusted, positive behavioral supports can be implemented and community based instruction in decision making skills can be incorporated to your child’s IEP so that your attorney will have something to present to the judge showing that this was a function of a disability and that you are taking constructive action to address it. Moreover, you’ll need your special needs coach to make it clear to the district that calling the police and getting your child into the legal system will not relieve them of their responsibility to educate your child. You will need someone consisitent, calm, cool and collected to remind them that if they feel the need to suspend to expel your child, then your child’s placement is inappropriate and an emergency IEP team meeting needs to be convened to develop a more appropriate IEP with a placement where your child can be supported and can learn skills necessary to functioning independently as a contributing member of society upon completion of their public education. This might mean placement in a special needs day school or even a residential program; but, whatever it means, your special needs coach will help you develop and present a well-reasoned program.
If your child has been in a serious accident that caused a mild traumatic brain injury
Following traumatic brain injury children may have many deficits that they did not have prior to the incident; and deficits that were previously present may be greatly exacerbated. Frequently children with ADHD fall victim to motor vehicle accidents because the same distractibility and impulsivity that contribute to problems in other areas of life make them poor drivers. Unfortunately, when they return to school staff too often lacks the knowledge on how to address their new deficits, and tends to classify the new issues as a function of motivation, temper or emotional ; when they may be direct sequalae of the mild TBI. In this case, you need someone who understands TBI to attend IEP team meetings and educate staff. Your child will need interventions specifically designed to address the acquired deficits associated with their TBI and your child’s teacher’s will need to learn about these acquire deficits and appropriate interventions. Your special needs coach can assist both you and the district staff through this process.
If you are going through a divorce, adoption, death in the family that is being manifest in your child’s behavior at school
Any major stressor can have an impact on the physical or mental health of a child; that they may not be equipped to communicate and discuss; this can be even truer for special needs children who have deficits in coping skills and expression. If you are having a difficult time dealing with a major life transition or stressor, your child probably is also. Moreover, you are likely to be less patient with your child due to your own level of stress. This is why this is a good point in time to have a few coaching sessions to improve you own coping skills and it may even be a good time to ask if your child would like a couple of coaching sessions. Internet sessions are particular attractive to children who have grown up with the internet and to those will deficits in social skills and communication. It is a tool they are familiar with and it permits them to “talk about” their feelings without having to deal with someone face to face.
The school says your child’s grades are too good for him to qualify for special education
This is a tactic that schools often employ to avoid providing needed services. The reality is they are responsible for addressing not only your child’s academic weaknesses, but also their weaknesses in communication, social skills, life skills, employability skills, coping skills and physical skills. However, when your child is performing academically at grade level (often because of outside tutoring, related services or help from parents), schools frequently turn a blind eye to these other needs for which the law holds them responsible. The fact is, at this point you may need the assistance of a special needs coach to assert your right to have observations performed at home and in the community to identify these other needs which should be addressed by the school district.
Different professionals all seem to be telling you different things
This is where a special needs coach with background and training in neuropsychology, psychology, and special education can be particularly helpful. The coach can review all the records from different professionals and help you integrate them, prioritize their recommendations, and determine which recommendations are most feasible for your family to implement. A coach can help you translate the “jargon” of various disciplines into common language and weigh the pros and cons of various options to develop the plan that will be most beneficial to your particular family in supporting your special needs child.
You are going through a major change in financial status and can no longer afford to maintain supplemental or related services we were providing due to the inadequacy of the school’s program
If your special needs child has been holding on in school because you have been using private insurance or your family’s funds to provide speech therapy, occupational therapy, physical therapy , tutoring or homework assistance and it is taking a financial or emotional toll on your family, it is time to ask a special needs coach for assistance. The school is responsible to provide a sufficient frequency and intensity of services to meet your child’s needs in order to close the gap between your child and his or her age cohorts in all significant domains (academic, social, behavioral, coping skills, communication, employability, life skills) to the point that they prepare your child to function as a self-sufficient adult and contributing member of society. If you have to supplement the services provided by the district the district is not meeting its responsibility and they need to be held accountable to stand up and do the job you, a taxpayer, are paying them to do. Your special needs coach will help you prepare your arguments, gather your documentation and present your information effectively. If the district doesn’t cooperate your coach can guide you in filing federal and state complaints or assist you with mediation and in the preparation for due process.
You are getting divorced and need some help negotiate who will be responsible for what with your special needs child
Divorce is usually contentious when there are minor children involved and more so when there are children with special needs. All too often, Dad leaves and pays a court ordered amount of child support that doesn’t begin to meet the financial requirements of a special needs child. Of course, you can battle it out in court with attorneys and exhaust what limited resources the family has to begin with. Or you can try to negotiate a reasonable plan with the help of a special needs coach to fairly and manageable distribute the financial and care giving responsibility associated with having a special needs child. Once an agreement has been reached, then you can approach an attorney jointly and ask for it to be formalized and filed legally; probably with considerably less hostility and expense that would have otherwise been involved.
But, we really don’t have any extra money
Should you save up and wait until I absolutely need help to pay for a special needs coach? No! An ounce of prevention in special education is worth thousands and thousands of dollars and many stressful hours trying to rectify a bad situation. Contact a special needs coach as soon as you realize your child is not receiving what they should be receiving from the school. The earlier you intervene the less time your child will struggle with a denial of a free and appropriate public education (FAPE).
What should you want to look for in a coach?
1. Someone with a Ph.D. in psychology, neuropsychology, or special education with a thorough knowledge of both normal and abnormal child development, tests and measurements, IDEA and NCLB
2. Someone with five or more years experience dealing with school systems
3. Someone with good solid references from other parents
4. Someone who will teach you the skills of self-advocacy
5. Someone with coaching or counseling training and experience
6. Someone who can remain calm and polite while at the same time remaining steadfast
Presented as a community service by
Susan L. Crum, B.S., M.S., Ph.D.
Special Needs Coach
Voice and Fax: 863-471-0281