Saturday, July 22, 2017

Advocating for Your Child with Special Needs in a Way That Promotes Self-Advocacy

Advocating for Your Child with Special Needs in a Way That Promotes Self-Advocacy As the mom of a now-adult special-needs kid, I’ve been thinking a lot about what we did that helped, what I wish we hadn’t wasted time and money on (there will always be a lot in that category, so don’t beat yourself up!), and what I think was most important. That last category, in particular, has changed since I was actually “in the trenches.” From this vantage point, I now realize that one of the most important things, a quality without which nothing moves forward, is emotional resilience. By that, I mean the ability to take in struggles and failures, wrestle with them, get back up, and move on. I mean the incredible strength of spirit it takes to be acutely, constantly aware your own inadequacies, or what the world sees as such, and still believe that you are worthy and capable of reaching for your dreams. I recently asked my son CJ what he thought had helped the most with this, and his answers surprised me. In my last blog post, I discussed the importance of getting into your child’s world as much as possible. Today, I’d like to talk about advocacy. Parents of kids with special needs know that advocating is forever part of the territory. You’re the hub that holds your child’s world together—explaining his needs to teachers, family members, other caregivers. It’s ongoing, it’s exhausting, and it sometimes makes you want to scream, “Can’t you people deal with a little variation?!” And eventually, you probably need to step back and let your child fight his own battles. When and how to do that varies, but I believe that is one of the most important steps toward empowering your child to navigate the world. We never actually sat down with our son and said, “This is how you talk to people about your issues; this is how you handle these kinds of situations.” But we did discuss his issues with him in a very matter-of-fact, “this is just how your brain works” kind of way. He surprised us more than once by distilling those conversations beautifully. I once spent an hour overexplaining my son’s issues to a homeschool group facilitator, only to have CJ later explain himself more effectively and in a fraction of the time. I would get caught up in the neurological details, which—according to my son—made people want to run screaming from the room. (Note to other brain research geeks: Almost no one is as interested in that as you are.) Despite my tendency to overdo things, however, he did learn something from my approach. I didn’t realize how much he had overheard me advocating for him, and the tone I set (if not the content) seemed to help him find his voice. “You were always just clear and firm—not apologetic, not hostile, not defensive. And when you explained why I needed this or that, you made it sound like ‘Look, it’s not a big deal, but this just is how he works and this is just what he needs.’ You showed me the right note to hit when I talked to teachers myself.” Whew! I now believe that advocating for a child is more important, on more levels, than I realized at the time. It isn’t just a matter of telling a teacher what techniques will or won’t work. It’s a message about who your child is, how he needs to be treated, and what’s going on for him as a human being, not just a little learning machine. How you see your child and his challenges translates powerfully to others. Ultimately, you are trying to create this message in his world: You are seen, you are understood, you are accepted. Therefore: You are safe. All children (indeed, all humans) need this, but I would argue that children with special needs require it more because they experience it so rarely. How we present them, and how we teach them to present themselves, is crucial to their self-identity. Friendship Circle - Written on June 6, 2017 by: Marijke Jones,

Sunday, May 7, 2017

Help Your Child Imrpove Self-Control and Practice Self-Modulation

To modulate, according to Dictionary.com, is “to regulate or adjust, soften, tone down, to alter or adapt.” Applying that, self-modulation means being self-aware enough to regulate/adjust/alter/adapt one’s behavior choices to better fit a situation. This is a valuable lifelong skill—and one that many children with disabilities struggle with. Self-modulation feeds independence. To encourage it, let your child practice decision-making.  I encourage you to offer this opportunity to your child in spite of possible risks and fears. Your child gets to (and needs to) practice responsibility using intrinsic motivation to feel empowered. The following are some ways I’ve worked on this with my son. You may be able to use these same ideas, or adapt them to the particular situations and interests of your child. Using Time Wisely (Redirecting from Stalling) On school mornings, we often struggle with getting out of the house on time. I want my son to take his vitamins and eat his breakfast. He wants to win the power struggle, and therefore he dawdles. My nagging doesn’t help him move faster. Perhaps you have this dynamic at your house. So I give him a choice: “Want to eat here at the table or in the car?” He knows from experience that as soon as he clicks his seat belt, he will have a small towel and a bowl of healthy food on his lap as we drive. He has to eat it all before he gets anything else to eat, and I don’t let him talk me out of it. Happily, he hates that bowl on his lap in the car. But having a choice makes him feel empowered. He chooses to self-regulate and almost always redirects himself to take a bite at the table. As you fade your prompts, ask “Are you hungry?” or say, “If you are done eating, please put your bowl in the fridge.” These redirect questions can also work for things like brushing teeth or tying shoes. Ask, “Do you want to brush your teeth in the bathroom or in the car?” or “Do you want to tie your shoes here or in the car?” If you have a preference, phrase the question to bias your child toward what you want. Showing Responsibility by Appropriate Behavior In restaurants, let your child order her own food and do her own negotiating. As an example, I take a carful of my son’s neurotypical friends to Chick-fil-a every Friday after school. Each child does his own ordering, and I let my son pay the tab with his youth debit card. Paying for things he cares about is meaningful to him. When we go to restaurants together, another way we work on responsibility is that I let him choose two books to take in. We then do reading aloud until the food arrives. My son prefers that I read and he listens, so we work out a compromise. I read one page, and he reads the next one. It has created some very nice family moments. Checking in and checking out at therapy or a doctor’s office is now my son’s job. He gets practice waiting in line, conversing face-to-face, and using an appropriate tone of voice. It is also his job to carry the school “excuse” note into the school office. Use backward chaining, with practice, and soon your child will have the entire process mastered. That involves letting your child do the final step in an activity, and then the one before that, and the one before that, until he is doing the whole thing himself. Choosing Appropriate Language Our children know how to push our buttons. My son can get a mischievous look in his eyes and start talking nonsense and using bathroom words. This often occurs when we are reading. To redirect him, I tell him at that time it is his turn to read. When he resists, I give him a choice of “read or listen.” If I can remove my side of the power struggle, even for a moment, that works as an effective reset. If you find a need to withdraw yourself from a power struggle as a reset or redirect when you’re in the public eye, I have found that something as simple as dropping a napkin on the floor and reaching down to get it works. I have also have picked up a menu and asked him what he wants to eat. A break in the action gives kids the time they need to transition out of unproductive behavior. Personal Space (Hands to Yourself) When you visit a museum or other places requiring “hands off,” let your child choose two books from home to carry, one for each hand. Keep a box of books in the car, as I do, so they are always available. Give your child a choice of carrying two books or keep hands in pockets. It gives me a sense of peace as a parent, as carrying books is what a regular kid would do. These and other everyday situations give your child opportunities to practice modulation in the real world. If you struggle with what an appropriate choice looks like, my litmus test is “What would a typical child do?” Article from Friendship Circle. Written by Gayle Fissher

Sunday, March 19, 2017

5 Special Education Terms Parents Need to Know

FAPE … LRE … IDEA … I confess: my children’s IEPs read like they were written in a foreign language. It took me a while to figure out what I was even reading, let along what it all meant. But special education law and your children’s documents should always be understandable. To that end, let me share a list of five must-know acronyms and terms (or groups of terms) that every parent of a child with learning differences or other special needs should know. Knowing how to speak the language of special education helps you as a parent make effective requests. It also lets the school team know that you are an educated parent advocate–which is just what your child needs. 1. IDEA = Individuals with Disabilities Education Act IDEA (with all its subsequent modifications) is the federal law that gives children with disabilities the same right to an appropriate education as children without special needs. Parents should know that IDEA is not just about test scores. IDEA has three stated purposes: • readying students to pursue their education after high school • preparing students for employment • helping students learn to live independently, to the extent possible. Federal law lists thirteen classifications under which children can qualify for special education. While the program known as Early Intervention provides services to children ages 0-three, public school districts are charged with providing special education and related services to students from age three through 21 (in some cases) whose disabilities necessitate it in order to make progress. Another key provision of IDEA is that parents are vital participants in decision-making for their children. This means that parents have a right not only to share information and voice concerns, but also to decide as part of a team along with teachers and/or other professionals what programs and services are appropriate for the child. 2. FAPE = Free Appropriate Public Education IDEA states that children with special needs are entitled to a “free, appropriate public education”. Free means at no cost to the parent—including the cost of transportation if needed to take a child to a school other than the child’s home school in order to place the child in an appropriate program. Appropriate is a critical term that parents need to understand. A program is considered “appropriate” for a child when the child in that program makes meaningful gains. “Meaningful,” in turn, means that the child is benefiting from the program, not regressing or stagnating. An “appropriate” program is not necessarily the best program. Also, progress is determined not by report cards but by measuring the child’s achievement versus his or her potential using standardized tests. 3. IEP = Individualized Education Program An IEP is the written document that the school, in conjunction with a student’s parents, creates in order to describe the special education program for the child. Parents should know that the IEP grows out of the child’s needs. If the school does not have in place the program or services that the team believes the child needs, IDEA charges the IEP team with finding that program or creating it. The IEP should set goals for the child for one year, but the team should revise it throughout the year, as needed, to ensure that the child’s program is appropriate. If parents are concerned about their child’s progress, it is completely appropriate for them to request a meeting of the IEP team to address those concerns. IDEA gives parents the right to do so. 4. LRE = Least Restrictive Environment Educating children in the “least restrictive environment” is part of IDEA’s mandate. What this means is that schools must educate students, to the extent possible, close to home and with their non-disabled peers. Parents need to know that LRE is not the same location for every child. The IEP team needs to consider the child’s unique profile. An environment cannot be the LRE for a child if the child fails to make meaningful progress in that environment. Special education attorneys often speak of finding the so-called “sweet spot”—that placement in which students are in an environment that is not unnecessarily restrictive, but also is tailored enough so that the student receives the supports that he or she needs to make meaningful progress. 5. OTs, PTs, SLPs = Occupational Therapists, Physical Therapists, Speech-Language Pathologists This set of acronyms represents three of the most common related services that children with special needs have as part of their IEPs, and the folks who provide them. The school provides these so-called related services to children, most often during the child’s school day. Parents should know that schools are required to assess students in all areas of suspected disability. Parents may ask for their child to evaluated for OT, PT, and speech therapy, but also in other areas if they have concerns. Physical therapists will help your child with gross motor skills, like walking, running, and jumping. Occupational therapists will help with fine motor skills, like writing,, coloring, and cutting, and may also address sensory-integration issues. Speech-language pathologists help children with producing the sounds of speech, using language to express themselves, and processing the language they hear. Schools have provided psychiatric evaluations, functional behavioral assessments, and assistive technology evaluations, to name a few. Parents can also bring private evaluations to the school districts. IDEA requires school IEP teams to consider this information. Parents should take heart in the fact that education is more than academics, and special education is not just for students with poor grades or who are failing in school. Education is a broad concept that encompasses emotional, social, and behavioral challenges that may interfere with a students ability to function in school. Students’ IEP programs have included supports for such emotional, behavioral, social, and other concerns. In addition to OTs, PTs, and SLPs, parents should know that behaviorists and school psychologists are two additional types of professionals who can play an important role in helping children whose disabilities affect their ability to function in school. … and lots more There are, of course, many many other acronyms and technical terms that may be thrown around by professionals in IEP meetings and the reams of paperwork that go along with them. Yet to work effectively to meet each child’s needs, all members of the team need to be able to speak the same language. Sp don’t hesitate to ask for clarification of a term or any other procedure, program or policy. Federal law makes you, the parent, a vital part of your child’s IEP team. Find a source of strength in you to be that confident mom or dad at the IEP table, unafraid to ask any question that helps you get the information you need. Because no one cares like you. You are your child’s best advocate, and your child needs you. For longer lists of special education terms, visit these online resources: • “Glossary of Special Education and Legal Terms” from Wrightslaw • “Disability Terms and Definitions” from Council for Exceptional Children • “Terms in Special Education” from Do2Learm • “IEP Terms to Know” from Understood.org • “Glossary” from The Iris Center Article from Friendship Circle and written by Greer Gurland - a Harvard Law School graduate and a mother of children with special needs, is the author of the 2016 multiple award winning How To Advocate Successfully for Your Child: What Every Parent Should Know About Special Education Law available in English and Spanish

Sunday, January 29, 2017

The Supreme Court Case Every Parent of a Child with a Disability Should Be Following

Legal experts predict that the US Supreme Court will take a major step towards advancing the legal rights of children who have special needs when the justices decide the case of Endrew F. v Douglas. The Court heard oral arguments last week in the case and is expected to provide a decision by the summer. The decision, in this case, could impact several million children and define what a free appropriate public education entitles them to. For the second time since 1975, when Congress passed the Individuals with Disabilities Education Act (IDEA), the Supreme Court is expected to define and further clarify the legal mandate of the IDEA. The IDEA states that school districts that receive public funding are required to provide each student who has a disability with a free appropriate public education (FAPE). The only previous Supreme Court case to define the term FAPE was Board of Education v Rowley 458 U.S.176 (1982). An Earlier Ruling on FAPE From the perspective of some parents and special education attorneys and advocates, the Rowley holding did not provide adequate legal protections. In addition, there has been disagreement between lower court federal judges concerning the application of the Rowley decision; therefore, the meaning of the term FAPE varies according to location. In Board of Education v Rowley, the Supreme Court stated that the purpose of the IDEA is to provide “access to a free public education” and that there are two definitions of FAPE. First, a child receives FAPE when the educational instruction is “specially designed to meet [his] unique needs … supported by such services as are necessary to permit the child ‘to benefit’ from the instruction.” The second definition of FAPE is an “individualized educational program … reasonably calculated to enable the child to receive educational benefits.” The determination of whether or not FAPE is being provided is relative to the expectations for each child, based on the child’s developmental needs. The justices wrote in Rowley that “the benefits obtainable by children at one end of the spectrum will differ dramatically from those obtainable by children at the other end… We do not attempt today to establish any one test for determining the adequacy of educational benefits conferred upon all children…” The case limits the obligations of school districts in their education of students who have special needs. The opinion states explicitly that states are not required to “maximize the potential of handicapped children” or to “guarantee any particular level of education.” Setting a Standard for Special Education Circuit Courts have interpreted the decision in Rowley with varying results; there is no uniform standard in the meaning of FAPE. The case of Endrew F. will provide an important opportunity for parents and advocates to gain further insight into the Court’s understanding of the IDEA. The case of Endrew F. v Douglas County School District involves a seventeen-year-old male, Endrew, who has autism. When he was in fifth grade, Endrew’s parents felt that he was not making adequate progress towards his social-emotional goals. Endrew, known as ‘Drew,’ was banging his head on the floor, removing his clothes, and bolting from school. Drew’s parents withdrew him from public school and placed him in a school that specialized in treating children who had autism. He started to make progress immediately, and his parents sued the school district for reimbursement of the $70,000 annual tuition. The federal judges ruled that because the school was providing “some educational benefit,” the parents were not entitled to reimbursement. Defining “Free Appropriate Public Education” The case before the Supreme Court is based on the meaning of FAPE. At the oral arguments, three lawyers presented varying interpretations. On the Scotus blog, reporter Amy Howe describes the positions, gives the responses of the justices, and provides commentary of the likely outcome. According to this report, the justices seemed to reject the proposal advanced by the school district’s lawyer, namely that even with minimal progress, a “non-trivial benefit” at school satisfies FAPE. The lawyer representing the family modified his argument at the oral argument in order to address the justices’ concerns about cost and the need for a national standard. His new proposal had two alternatives, according to the Scotus blog post: “A student’s IEP should generally ‘be tailored to achieve a general educational curriculum at grade level’; if that is not possible, the IEP should use alternative benchmarks that are ‘the highest possible achievable by the student.’” The lawyer for the Justice Department stated that the IDEA required “significant educational progress in light of the child’s circumstances.” The Scotus blog report states that this is the standard most likely to be assumed by the Court because it follows legal precedent most closely. The Scotus post also states that the federal government’s suggestion “comes from the Department of Education, which – as Breyer noted – has expertise in issues related to education and the IDEA.” Parents should pay attention to the decision in this vital case. It is expected to provide a long-awaited definition to the crucial phrase “free appropriate public education.” By: Rachael Wurtman Friendship Circle

Monday, March 21, 2016

When Your Child Turns 18: A Guide to Special Needs Guardianship

When someone turns 18, they become an adult and are expected to make the right to make decisions about their medical treatment, finances and life.
In order to make these decisions binding (in a legal sense), the person should be competent to understand the decision being made and the consequences of that decision.

What is Guardianship?

Guardianship is a legal proceeding in which someone (usually a family member) asks the court to find that a person is unable to manage his or her affairs effectively because of a disability. A guardian steps in the shoes of the person with a disability and makes the decisions for them.
The process to set up a guardianship can be long and expensive and is not a decision to be taken lightly. This article presents five things to think about when considering whether to seek guardianship for your child once he or she turns 18.
There are different types of guardianship depending on the person’s needs. Generally, there is a guardian of the person and guardian of the property and one person can serve as both.
A guardian of the person can make decisions about a person’s healthcare, housing, food, clothing, and other subjects that affect the person.
A guardian of the property makes decisions about a person’s money, income, property, public benefits and other financial matters.

1. Will your child need a guardian?

Appointment of a guardian is a serious issue. Guardians are appointed by the court and it can be difficult, costly, and time consuming to establish and maintain a guardianship.
Because the guardian makes all the decisions as ordered by the court, the individual under the guardianship loses a great deal of independence. He or she will no longer have the authority to make decisions about his or her personal life or property because that authority has been delegated to the guardian.
In general, a guardian should be appointed only if there are no less restrictive alternatives. A diagnosis of a mental illness or intellectual disability does not automatically mean that a person lacks the capacity to make decisions.

2. Alternatives to guardianship

Below is a list of some general alternatives to guardianship. These alternatives can be used alone or in whatever combination is necessary to support the person to live as independently as possible. Ideally, these choices will begin to be discussed as you, your child, and your child’s teachers and providers begin to discuss the transition plan from school.

Special needs trusts

A Special Needs Trusts can be very helpful for an adult with special needs. For more information about this topic check out my previous post: The Pros and Cons of a Special Needs Trust

Family guidance

If a family member is available to provide advice and help and individual with special needs make a decision voluntarily there may be no need for a guardianship. However, if the person is too easily influenced, there is a potential for that person to be taken advantage of and guardianship may be appropriate.

Assistive or Supported living services

If there are only a few areas where the person needs assistance, there may be programs, providers, or professionals who can assist with just those tasks. For example, if transportation is an issue, there are services available to take the person to and from medical appointments. There are various levels of services available to meet varying levels of need. Usually a case manager can help coordinate services for the person.

Durable power of attorney

If the person has periods where he would be considered competent, he can enter into a power of attorney which names one particular person to make certain types of decisions on his behalf.

Financial Representative 

Representative payees or joint ownership of bank accounts to help the person manage his or her finances.

3. Who should be named as guardian?

States usually have a preference for persons to be named guardian. For children with disabilities who turn 18, the preference is usually for the parents, or if parents are not available, an adult sibling or other adult family member. If no family members are able to serve as guardian, then a close friend. And if no friends are available, then the court can appoint a professional guardian.
Guardians are subject to court supervision, which provides a powerful tool to prevent the guardian from mishandling the person’s finances or taking advantage of them. Sometimes, especially with professional guardians, the guardian must post a bond (a special type of insurance that protects the person’s estate from mishandling).
In some cases, guardians can be reimbursed for their expenses and paid for their services from the assets of the person they are taking care of. Generally payments are made only to professional guardians, but a family member who has been appointed as guardian may, depending on state law, also seek compensation by making a request to the court.
When a guardian can no longer serve, the guardianship itself does not end. Rather, a new guardian is appointed by the court. In the case with a parent of a child with a disability, as the parent ages, he or she may no longer be able to care for their child. The guardian should consider who would replace him should he no longer be able to serve.

4. Obtaining guardianship through the court

A guardian is appointed by the court upon petition by an interested person. The petition contains all the basic facts including the petitioner’s relationship to the person to be under guardianship and a brief description of the disability and how it affects the person’s ability to make decisions. The petition should also include the reasons why the court should appoint a guardian. This may generally include an affidavit or certification from a doctor attesting to a person’s level of functioning.
There will be a hearing before a judge. The petitioner must present evidence of the need for guardianship. The petitioner usually must prove: that the person lacks sufficient understanding or capacity to make responsible decisions; that this lack of capacity is caused by a disability; and that no less restrictive alternatives are available.The petitioner must also show that the proposed guardian is fit to be appointed, is capable of carrying out the responsibilities of a guardian, and that no one of higher priority (for example a parent) is available.
Generally, for the hearing, two attorneys are involved (one representing the person asking the court to appoint a guardian and one representing the best interests of the person to be cared for. Witnesses such as the person’s doctor or other providers or friends or family may be called to provide information on the person’s level of functioning.
Anyone, including the person who is to be under the guardianship, can object to the appointment of a guardian in general, or to a specific choice that the guardian makes. There are different processes through different courts but generally, any objections involve a hearing and filing papers with the court.

5. Determining competency

To obtain a guardianship, a judge must determine that the person does not have the capacity to care for him or herself in some way. Determining capacity is important because the degree to which a person is capable of making an informed decision relates to which decisions he or she can make. Capacity is a fluid concept depending on the person, the circumstances, and the decision to be made. A person can be competent to make some decisions, but not others.
Usually, an affidavit, a statement written under oath, from a medical doctor attesting to the person’s level of functioning, decision-making ability, prognosis and diagnosis must be used to support a claim that a guardianship is necessary. However, depending on the state law, more evidence, like an evaluation by a psychologist, school performance records, prior medical records or testimony from the person and his or her support network may be necessary to establish the need for a guardian.
The standards differ from state to state so it is important to check the law where you live. In general, there must be clear and convincing evidence that a person lacks understanding to make or communicate decisions or is unable to manage his property and affairs effectively due to disability.

6. What are the powers and duties of a guardian?

The court will outline the powers and duties given to the guardian and those powers and duties will be only those necessary to provide for the demonstrated need of the person with a disability (i.e., for a specific type of decision, or of the person, of the property, or both).
There are some instances where the guardian must ask special permission from the court like in the case of a life-threatening medical treatment or changes in where the person will live (i.e., selling property or moving the person to a facility or group home).
The guardian usually must file a regular (usually annual) report with the court. The report allows the court to supervise the guardian’s actions, to verify the person’s needs are being met, and to question whether the guardianship should be modified or terminated. In the case of finances, the guardian must provide a record of everything done with the property under the guardianship order.
If a guardian fails to perform the duties of that position appropriately, she may be removed or subject to other court sanctions.

In Conclusion

It is important to keep in mind that laws governing guardianship can vary from state to state. The information in this article is general and not intended to present the rules for any particular state. Prior to seeking guardianship in your state, be sure to check the applicable laws or consult with an attorney specializing in guardianship issues.

By Melissa Stuart: Friendship Circle

Monday, November 9, 2015

When You Feel Guilty for Not Being a 'Superhero' Special Needs Parent

Parental guilt time. The other day I unwittingly sent my 7-year-old autistic son to school with the beginnings of a stomach flu. I am fortunate in that he is verbal and did tell me his tummy hurt when we arrived at the drop-off gate that morning. But when I pressed for details, he struggled to indicate he had to use the bathroom. OK, this was doable. I hurried him through the gate, explained the situation to the classroom aide and off he went just as the bell was sounding the beginning of the school day.
                                                                                                     
In my mind, the problem was solved, so I didn’t give it a second thought. A short time later when the school nurse called to report he’d vomited all over the science lab, the guilt came rushing in. He’d obviously been feeling worse than simply needing a potty break but was incapable of telling me. Instead, he soldiered through his daily schedule as best he could until, well, he couldn’t. How had I missed this? I’m certainly no stranger to playing detective and trying to decipher things he says. I couldn’t help but feel I totally blew it in the mommy department.
While my son has made some amazing strides in the ability to express himself verbally, his autism makes it challenging for him to describe the depth of what or how he’s feeling. Even just initiating communication in general has been, and continues to be, an uphill climb. Considering that, I guess I’m lucky he was able to tell me about his tummy ache that day in the first place. But as usual, my tendency to torture myself with the clarity of 20/20 hindsight rears its ugly head: I should have taken a moment to pause and observe him more closely and perhaps then I would have picked up on the fact it was more than just him needing to use the bathroom. Shoulda, coulda, woulda. In the midst of the morning rush to get to school, I took him at his (limited) word.
Before I beat myself up too much, I must remember these moments of guilt and frustration serve as my reality checks. They do not define the bigger picture. As much as I’d like to, I will never — nor will any parent — be some kind of all-knowing, mind-reading superhero. When it comes right down to it, we’re all winging it as best we can, special needs parent or not. We will inevitably make mistakes along the way. That’s just life.
                                                                                                      
The fact of the matter is, while the nuances of verbal communication remain elusive, my son is improving. His progress from a completely nonverbal 3-year-old to where he is now still utterly boggles my mind. Slowly but surely, he’s gaining skills and coping techniques to help navigate a world, which often makes little sense to him.
When you’re the parent of a child with autism, it’s so very easy to put this tremendous pressure on yourself to be some kind of caregiver extraordinaire. We transform into these hyper-vigilant mama and papa bears who become incredibly hard on ourselves, even in the face of an honest snafu. But — and believe me, I know this is easier said than done — we must resolve to take a step back and give ourselves permission to be human. It’s OK to take a breath, it’s OK to not be able to think 1,000 steps ahead to avoid the unavoidable, it’s OK to be wrong sometimes. It’s also overwhelming and stressful but not insurmountable.
So until the my son reaches a point of being able to elaborate on his own, I’ll listen to what he says but also pause and remind myself to look — really look — at him for some inkling of any deeper meaning that might be bubbling just below the surface. However, on the flip side, often there are no hidden details to what he’s telling me. And somewhere in the middle lies my challenge to discern the difference. In the meantime, I’ll try and forgive myself for the mistakes I know I’ll make.
And when I have remembered to take that step back and breathe a moment, I’m struck by the larger perspective that keeps me ultimately grounded. Even with the challenges my son and I encounter as we navigate these uncharted waters, there is not a day that goes by I’m not truly thankful he is in my life — autism and all. That’s what matters. That’s my reality check. And so it goes.
 
By Erin Kirschner