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6 Responses to “Parent Ideas Forum”
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Barb Kelly says:
I regularly visit a forum dedicated to offering advice to parents of children with autism.
My son has been diagnosed with high-functioning autism which is similar to Asperger Syndrome.
Children who present at the higher end of the autistic spectrum often have specific difficulties in fitting in with standard schooling regimes because their symptoms and behaviors are not as outstanding as those of children who are more profoundly affected.
Often these children go through years of misery and stress from just trying to fit in to the “normal” flow of life in class. Many are so stressed-out at days end, that when they arrive back to the safety of home, they tend to let it all out – making life a merry-go-round of frustration and anger.
Much of this is poured out by parents who visit the forum. They tell tales of tussles with teachers and school authorities. Others lament just how unhappy their children are. Some stories of parents and children being treated downright unfairly just make my blood boil.
I usually jump on the forum and try to offer some sense of empowerment to those who feel so downtrodden and overwhelmed by a system that is hard enough to navigate even when your children don’t have specific behavioral or sensory difficulties.
Most parents take a little heart from the advice I have to offer – but as we all know, sometimes it’s a huge step to actually realize that you do have the power to change things for your children and offer them some peace and respite from trying to be just like everyone else. -
Grandma Linda says:
Barb,
Thanks for sharing this from the perspective of a special needs child. You’re right, navigating the system can be a bear, even when you don’t throw additional hurdles into the mix.
When you offer advice, is it specifically what you’ve found to be true from homeschooling with your own child (emphasis on homeschooling), or is it more generic (you can get through this), or more specific (when “this” happened I tried “that” with my son and it seemed to work, outside the context of homeschooling)?
I guess it could be more simply put, the carrot or the stick?
Thanks so much for getting this conversation off the ground!!
Grandma Linda -
Hi Linda,
The times when I feel most compelled to offer “the carrot” of homeschooling are when parents (usually moms) come on to the forum desperately seeking a solution to their child’s inability to cope with school.
Children at the high end of the autistic spectrum, because they appear so close to normal, have many challenges trying to fit the mold. Many have sensory issues and also have other challenges related to the way they perceive things. Many of these children spend most of the day just trying to hold it together, and some of them don’t manage very well at all.
To get to your question – some of the parents actually mention homeschooling as an option, and in that case I would try and relate our experience, pointing out the positives for a child on the spectrum.
Other times, if the parent is not specifically thinking of homeschooling, I would just relate my experience of homeschooling in trying to find the best situation for my son.
I’m also mindful that school is the “only” way of thinking for many parents, and in that case I would offer some practical advice for dealing with their present situation.
Most parents are very keen to have their child diagnosed so that they have access to early intervention programs and also an aid for their child during the early years of grade school. Diagnosis of high-functioning and Aspergers children is really a bit of a hit and miss affair depending on the expertise and perception of the professionals that you happen to come into contact with – many children attend school undiagnosed, although the teachers quite often can pick it.
Interestingly, my son’s formal diagnosis has very little bearing on anything because of the fact he is homeschooled, and we tailor everything to his needs. However, if a child is attending a school, I believe a diagnosis is essential.
So in answer to your main question,my emphasis is definitely on homeschooling as a viable solution to take the pressure off the child and the parent.
Lastly, I have lost count of the number of times that people have remarked how “happy” is my son’s disposition. He does have his moments, but on the whole he is a happy child. I often compare his demeanor with those of the stressed out children I hear about on the forum. I’m convinced that the freedom he experiences has enhanced his enjoyment of life. -
You know, Barb, every time I hear you talk about how happy your son is – and, truth be told, why shouldn’t he be! – I’m just so grateful he has you as mom!
What I hear you saying is that, as with me, it depends on the circumstances of the parent seeking advice and, in large part, very often it’s the economy that ultimately precludes full homeschooling for the family.
This is certainly a problem bigger than homeschool advocacy (or is it?). But it does point to learning simple/frugal living as a part of the equation for a sizeable number of families to be able to consider it seriously. Time to pump up that section of the site! Thank you, and would love to hear what other readers have to say!! -
Terri Willingham says:
“Most parents are very keen to have their child diagnosed so that they have access to early intervention programs and also an aid for their child during the early years of grade school. …Interestingly, my son’s formal diagnosis has very little bearing on anything because of the fact he is homeschooled, and we tailor everything to his needs. However, if a child is attending a school, I believe a diagnosis is essential.”
Because my daughter was homeschooled all her life, we didn’t even realize she had Asperger’s until she was in her teens. Besides the fact that Asperger’s often presents differently in girls, and while we knew she was a little “quirky”, it simply wasn’t an issue when she was younger. However, it did become a factor at home, as the Asperger’s began to manifest itself in ways that made her unhappy and frustrated as she became older, and confused her younger brother and sister, so we sought a diagnosis, to find out what was going on in her life and in ours, when she was about 13.
She was misdiagnosed as “depressed,” initially, which we dismissed as incorrect after evaluating it a bit. A second diagnosis, a year later, headed us in the right direction, and with the help of the Center for Autism and Related Disabilities (CARD) http://www.card.ufl.edu/, we got a formal diagnosis of Asperger’s Syndrome when she was about 17.
She’s apparently very high functioning- driving, going to college, self-employed with a craft she’s talented in and that appears to be lucrative, and even with a small network of friends (!) in special interest group to which she belongs — amazing things, for someone with Asperger’s, and I believe due in large part to having been home in her formative years and not having to deal with the frustrations of public school life.
While a diagnosis wouldn’t have been particularly useful in her early years, on our daughter’s journey to adulthood (she’s 21 now) the diagnosis has proven valuable both in working her way through college and in helping her and others understand how to create work-arounds as she strives to become a successful, independent adult. CARD has also been an invaluable advocate when she’s hit bureacratic roadblocks, at no cost to our family.
I think homeschooling can provide a vital foundation for a child with Asperger’s, but I think it’s only one part of the picture. After watching my daughter, and knowing other families dealing with similar issues, I’d say two other very valuable components would be having formal advocacy, and, if at all possible, a special interest support network for whatever a child with Asperger’s is interested in.
I wish my daughter could always enjoy the freedom she’s enjoyed at home. But she wants to live independently, and that brings the price of frustration for her sometimes, so I can only hope her early years of freedom, coupled with our ongoing support and the advocacy of CARD and others who want to help her succeed, all add up to happy, independent, and successful life.
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Suki Wessling says:
I wrote an article about some local parents of kids with special needs who were charging their school district with intentionally withholding services to get the parents to leave the district. The hope was they’d get so exasperated that they’d go to a private school or homeschool. But the fact is, most parents (with or without kids with special needs) are completely unprepared to homeschool their kids. Where I am in California, it’s pretty hard to live without two incomes. And parents are told when their kids are born, they’ll get the services they need. I am working on a new article about our local special education support services organization, and their director told me that she believes that the solution is to fully fund special ed so that it stops sucking money from the general ed budget. Then, she says, ALL kids can get a free and appropriate education.
Link to this page
This is an area that is near and dear to my heart. Years before becoming a mother, I was an attorney working in education policy, alternative education, and special education. What I saw from the policy side of education was that although many well-intentioned adults wanted to improve education for all children, including those with special needs, the barrier to change was the system itself. Public education, as an institution, is often not well equipped to offer individualized education. It simply isn’t part of what the institution is about.
As fate would have it, my oldest son, adopted from Ukraine at age 33 months, has special needs. I remember thinking, “OK, I’ll advocate and fight and get him what he needs. After all, I’m a lawyer, I know the system, and heck, I even know the players!”
Boy, was I wrong. The law presumptively favors school districts. That’s the way IDEA was written. In far too many schools across the nation, there is a “wait and see” approach in those early grades. It’s an interesting dynamic: On one hand, we push literacy in kindergarten so that all children are reading when they enter first grade. Yet for kids who still cannot recognize letters in second grade because of learning disabilities, we are told, “Wait and see. Maybe he’ll get it this year.”
The road was indeed bumpy and oftentimes sad, as I watched my spunky, spirited boy turn into an angry, deflated shell of his former self. I decided that time was of the essence, as a “wait and see” approach seemed to be based more on the convenience of adults and school district budgets than the needs of my child.
Homeschooling restored his spirit. The smiles returned. He learned to value his strengths. And although once told by a school official he’d never learn to read so why bother, he learned to read “his way.” Often, that meant hanging upside down off the couch. I will admit, it is not always easy, but as his parents, we absolutely have his best interests in mind. We can build an educational environment in which he CAN be successful. We can teach him the skills he will need to navigate society as an adult, without the bullying, harassment, and negative self-esteem which came packaged with public school and special education.
It still leaves me wondering this: if special education were ever fully funded (and not at the dismal 17% offered by the federal government), would it make a difference for children like my son? What would that education look like in a public school? Would we ever see a public school that allows him to dig holes in the dirt and ride his bike BEFORE sitting down to write a paragraph? Would we ever see a public school that actually reminded him to chew gum, as it helps him focus? Would we ever see a public school that looked closely at his learning styles in every subject and then created lessons tailored to his unique interests and needs?
It seems to me that regardless of how special education changes in the future, education is still an institution. And so I wonder, can an institution ever meet the needs of children in the way a family can? Comparing apples and oranges comes to mind.