My goal here is to not only validate your experiences, but to give you some information so that you can make informed decisions based on accurate information and not on what you are being told by the "gatekeepers" at your child's school (reference the photo above...OK, you know where this is going).
I find it very disappointing that few, if any, national organizations and leaders in the field of learning disabilities and special education address the experiences of parents who get into the "special education blender". In my 20 years of private practice and years teaching and working as a school psychologist in the public schools, I have seen a persistent pattern. With that said, It's time for you to know what you don't know. If no light is shown on the situation, nothing will change for teachers or students.
Before we begin, let me tell you that I will be addressing special education assessments, eligibility, the IEP meeting and goals and objectives, placement and services in future posts. So, stay tuned. It's best to read these posts in order.
First things first. It is at this time of the year that schools begin receiving requests for assessment. There is also a tsunami of referrals in the spring. A special education referral, you say? Um, what is that and what should I expect? So glad you asked...here's what my parents report to me and what I have witnessed for myself once a parent brings their concerns to school administrators:
- "Mrs. Smith, I appreciate your concern, but Sam's test scores have to be 2-3 years behind in achievement before we can test him." NOT!!!
- "Oh, Mrs. Smith. Clearly, you do not understand. We have to hold a Student Study Team Meeting (Student Success Team Meeting or whatever your "flavor" is at your school) and we have to follow their recommendations and implement interventions before we can test Sam. " NOT!!!
- "We usually deal with these kinds of emotional and behavioral problems by having Sally see the school psychologist for 10 minutes a week before we start all of that testing." NOT!!!
There is NOTHING in the federal law that indicates your child has to be "behind" by any specific guidelines and you do not have to wait for endless meetings to take place or interventions to be implemented. You do not have to wait for your child's difficulties to worsen before there is a "tipping point" for action. I strongly recommend that you consider the interventions that are suggested in order to give your child support while the assessment is underway. Refusing to consider support is frowned upon should you get into a fair hearing dispute with the district.
Note that the "gatekeepers" will appear confident in their approach and use terms such as "district policy" and "my discretion". Don't let a rogue administrator intimidate you or distract you from your mission.
(Q) Well, WHAT do I do?
(A) Write a simple, straightforward letter indicating that you are requesting a special education assessment because you feel that your child has special needs. You do not have to explain or defend yourself.
Oh, make no mistake about it, you will be questioned. Be firm in your resolve...have some responses at the ready about your observations. Start keeping notes and perhaps work samples. Attach them to your request in order to emphasize your point.
- Sam has trouble with tests.
- Sam does not seem to understand basic math concepts.
- Sam has trouble with spelling (Oh, but spelling is not a special education eligibility...but he may be dyslexic..well, we don't recognize dyslexia...it's just a reading problem..OK, fine, test him for reading problems).
- "You are the educational experts. I observe him struggling in a number of ways and I am coming to you for support."
Getting stonewalled anyway? Bypass the school level (you'll become very popular at this point) and move onto the district level. Contact the district's special education director and report, in a rational and reasonable fashion, that you are having difficulty and you feel that there is a "better way to handle this than to hire an advocate or an attorney". Give them a chance to help you.
You may end up needing an advocate. An online resource is the Council of Parent Advocates and Attorneys (COPAA). They have a section where you can type in your zip code and they'll list professionals who are members. It's up to you to determine which one is a "good fit".
Here are the FAQs...
- Do I really have to put my child through this process?
- I don't want him labeled. Will this follow him forever?
- My mother says he'll be in classes with "THOSE" children?
- I am afraid if I start this, I will lose control. What are my rights?
Let's take the easy ones first:
Labeling: The only thing in the world that everything has is a name. Everything has a name. We use labels because it represents the agreement that we are all talking about the same thing. We use certain terminology for the subject at hand. Vocabulary about cars is very different than the vocabulary about dentistry. Check your pulse on this. If this is truly your issue as a parent, get some support for it. You have every right to be anxious, but you don't have the right to be paralyzed. It's not you sitting in that chair day after day fearing shame and humiliation. Let's call it what it is and have at the solution. Be brave...it doesn't mean you have to like it. It means you have to take action. Anxiety and pain prompt action...
Students' records are destroyed once they graduate. I know this because when I try to get records for students coming to me for documenting their need for accommodations in college once they have graduated from high school, the districts tell me that they no longer have the records. TIP: Under the Buckley Amendment, (Family Educational Rights and Privacy Act of 1974), you have the right to examine and challenge your child's educational records while they are attending public school.
Placement: Right now, at this stage of the process, placement is not a consideration. You have a "say" in your child's placement and if you feel that it is not appropriate, you can visit other programs to determine where your child's needs will be met.
Rights: This is the reason for the angst of many a school administrator. When you sign the assessment plan which legally is to take place within 15 days of making your assessment request, you should be given a booklet of rights. For heaven's sake, read it...read it...read it. You have rights and the district has rights. Learn about them. There are many resources online to answer questions. Educate yourself. Go online and download the Special Education Rights and Responsibilities publication I referenced in the post entitled, "If I robbed a 7-11..." (that got your attention, didn't it?).
Do I really have to do this? This is the tough conversation. When I interview parents to determine if we will make a good team for their child and if I am in the right profession (versus a language specialist or autism specialist) to address their child's needs, I spend at least an hour asking them "hot topic" questions. Many of these questions draw looks of serious concern, but I have found that the child's history is the key to the present challenges.
Before I go into "my" questions, I want to state, up front, that you are not to overly interpret the content of these questions as an indictment that your child is destined to have trouble. These are the questions I ask within the context of the reason for Mom and Dad coming to my office in the first place. Certain "conditions", "events" and "behaviors" are known to be associated with developmental disorders (learning disabilities, ADHD, language processing disorders, motor disorders, autistic spectrum disorders) as well as behavioral and social-emotional disorders. The questions are intended to prompt you to be observant, to avoid having your concerns be 'dismissed' and to keep you from grieving over not having acted sooner. It is extremely painful for me to hear parents say, "I wish I had known this earlier". My questions should encourage you to have your own questions answered.
- Have these issues been longstanding?
- Has your child demonstrated 'immaturity', difficulty complying with age-appropriate requests?
- Did your child achieve language or locomotor skills later than anticipated?
- Was your child premature? If so, how many weeks and how much did she weigh?
- Did your child experience fetal distress?
- Was your labor protracted (especially long?). Was there talk about a C-section because of the well-being of your child?
- During delivery, were there complications? Did your baby breathe right away? "Pink up" right away? Cry loud and long right away? Was your baby blue at birth? Cord wrapped around his neck? What were the APGAR scores? (google this to learn of Dr. Virginia Apgar and her research and experiences).
- Is your child a multiple? Twins and triplet births can be related to the concept of "discordant" where one infant does not make the rapid gains in development seen in other other infant (s).
- Did you attempt a vaginal birth after a previous C-section (VBAC) and had difficulty delivering your child?
- Did your child have colic or sleep-related difficulties?
- Did your child crawl before walking?
- Is your child noticeably "different" from his siblings? If so, how is he different? Sit down, think about "what" is concerning you about him.
2. Does your child have a history of chronic ear infections?
- Chronic middle ear infections (otitis media) make a person vulnerable to language processing and auditory processing disorders.
- If your child had chronic ear infections, there is a likelihood that they also experienced "subclinical" ear infections that did not rise not the level of discomfort that prompted treatment. However, fluid in the middle ear interferes with the accurate acquisition of sounds (phonemes) which, in turn, impact reading and spelling.
3. Does your child have an articulation disorder?
- In my experience, too many parent were told that their children would "outgrow" the difficulties with pronunciation. Don't believe this. Even if your child improves their pronunciation without intervention, during the interim, they are likely to have developed reading and writing problems. Why? Because if you cannot make the sound correctly, you will "write what you hear". Phonemic competence (correct sound-symbol association) is critical to reading and writing.
4. Did your child have intense and frequent tantrums during the preschool years?
- In general, is your child simply more difficult to parent than expected? If the tantrums are frequent, severe and last much longer than is reasonable (child doesn't seem to run out of steam), their behavior may be related to sensory integration issues (the physical environment is intolerable) or they may have an unexplained level of persistent anger or defiance associated with childhood onset bipolar disorder. Before going the route of a diagnosable emotional disorder, it's important to explore any physical issue such as chronic gut distress that may trigger these episodes.
- I had a client who had been diagnosed with bipolar disorder as well as a number of other disorders (ADHD, oppositional defiant...blah, blah, blah) and had been through several residential treatment centers. Her family was exhausted, traumatized and hopeless. I was suspicious that her aggression was related to "something" organic which turned out to be polycystic ovarian syndrome. Her aggression "impressed" me as being particularly "male" in nature and an assessment by an endocrinologist confirmed the "why" behind the failure of the many psychiatric medications she had taken over the course of many years. She had a physiological and not a psychological disorder. At times, you can judge a book by its cover...
5. Did/does your child struggle with learning basic concepts such as sequencing, the alphabet, counting, the days of the week?
- If you have worked intensely on these skills and the gains were lost days later, your child is likely to need intensive and specialized intervention to address the underlying cognitive, language or attentional deficits. Do not allow yourself to be convinced that they will "get better over time". This has not been my experience. The "basics" are the basics because they are just that...the most rudimentary elements of a concept or task. If your child is struggling to master the alphabet, at what point will they learn how to read? Common sense is your best guide.
6. Has tutoring support or other interventions helped?
- I feel that tutoring or educational therapy is a "home remedy" and is a prudent first step. Most students do not require a comprehensive assessment or individual/intensive learning programs in order to make progress. If tutoring, educational therapy, language therapy, occupational therapy or other services are not generating progress, it's time to find out the reason for the lack of expected progress.
7. How socially competent is your child?
- Is your child invited to birthday parties, sleepovers, or other age-appropriate social events? Does he even want to be invited?
- Has the teacher noticed that he has pals at school to play with at recess or eat lunch with and is he invited to join group projects or does she have to assign him to a group?
- How do other children react to her when she approaches them?
- Do other children seek out your child or does their engagement have to be initiated by an adult?
- Is your child empathic, manipulative, domineering, non-compliant or too emotionally reactive?
It is not always the case that children with social avoidance are autistic. They can be socially anxious (social anxiety disorder), have language processing disorders (particularly painful for girls who are "all talk") or have ADHD whereby they just don't take in the salient features of the social landscape. They might be depressed or come from environments that are unstable and unpredictable and have few emotional resources left over to cope with both the academic and the social demands of the school setting. They may be physically ill with immune disorders, thyroid conditions or other organic ailments that merit pursuing.
8. What kinds of comments, especially the "off the record" comments have teachers made to you? What kind of grades have their earned and how robust do their standardized test scores look?
- I put much more "stock" in teachers' comments than I do grades or test results. If teachers are concerned, there may be those unwritten "rules" about how far they can go to help your child. Listen carefully to what they say and if they ask you to keep it confidential, do so. There's only so much even they can do before they are "spoken to" about their actions. Remember, this is a bureaucracy and the herd needs to run together for survival.
Exhausted yet? Well, this is just the beginning of the process as we quickly conceptualize "what"we think might be going on. I present a provisional assessment plan to parents at that time. If parents endorse enough of these "issues" or "conditions" discussed above, then an assessment is warranted. The educational system keeps marching forward and it does not remediate student's deficits. The best I can hope for is that kids are kept afloat and not emotionally traumatized before we can get an intelligent plan in place.
Even if your child is in a non-public school for students with learning or behavioral difficulties, the appropriate grade level curriculum has to be presented to them. Oh, this just makes so much sense...right...if your child is reading at the 3rd grade level and is in the 6th grade, she will be presented with 6th grade curricular materials. Makes no sense to me whatsoever. It's no wonder that I recommend that students undergo intensive, individualized and immediate intervention (My 4 I's) before they can even attend a specialized non-public school. There's just no opportunity for them to "fill in the blanks" in their Swiss-cheese reading, math and writing skills or to enhance their "learning to learn" skills.
Once your child enters middle school, it's all about the mountain of homework and surviving one day to the next. Grueling. From a developmental perspective, they don't want help, especially from you, Mom and Dad. It's their biology's way of achieving independence and heaven forbid that they are "different"...makes this whole remediation process a real struggle, so get busy in elementary school. There's no such thing as "too early" to begin to address their learning and emotional needs.
Now that you know what you previously didn't know, you've got a lot of plans to make.