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Fears and Raising Children with Special Needs

October 26, 2011 in Featured, From Julia by Julia Roberts

When we are sharing here on Support for Special Needs about the unique challenges of raising kids that have differences there’s always someone to offer a different perspective. In doing so they make you think about how grateful you are there is someone who truly understands.

We all have different perspectives (obviously) on what to focus on, what motivates us to keep going each day (when the day kicks us in the teeth) and in what way we present our stories (public or private, positive or negative). We all have fears. Some of us share our fears; some have them but are afraid to share them.

During my son’s battle with kidney failure, a botched surgery, kidney transplant, and subsequent frightening depression I had many fears for his safety, for his general well-being, for his life. I didn’t voice my fears about him dying very often and I tried to shut them away during the period of time he was suffering but it was an underlying tone for me. My husband wasn’t able to voice it, think about it, or hear me talk about it either. It was a hard time to have those fears.

Some fears that I and other community members have…

  • -          Financial security, for us now and our children in the future. Keeping insurance, hitting maximums before our kids are 5 or 10 and the many out-of-pocket costs of taking care of kids with special needs. Many of us are  discussing  special needs trusts before our kids are five.
    -          Independence into adulthood. We want our kids to have as much independence as they are able to gain. We worry for their safety and happiness.
    -          Bullying. We worry our kids that their developmental, physical or mental challenges will be the target of bullies. For me, this started at kindergarten and continues…
    -          Change. For some of our kids change can be extremely difficult to navigate. Early on we learn that they don’t like natural transitions in the world and we grow to fear it because adjustments are difficult. For parents, sometimes change means a progression in a disease symptom, medication, treatment, or arrangement. Sometimes we fear it. Greatly.
    -          Acceptance. Tied to bullying of course, but acceptance is huge worry for many of us. We want our kids to grow up being able to experience typical things everyone wants to enjoy…friendships, inclusion in social events, feeling welcome in new  groups of people, sleepovers. Acceptance.
    -          Education. We want what is our child’s right. Reasonable access to education. We want a compassionate education team, we want services that will help them, appropriate classroom settings and people to treat us parents/caregivers as part of the team. We want everyone to help our kids reach their potential. Period.
    -          Abandonment. Sadly, the acceptance item on this list extends even to people who love us. Our kids aren’t “perfect” and some come with a lot of management; behavior issues and plans, problems with eating, dressing, toileting and speaking. We want the people who love us to try to understand that we’re doing our best and we don’t want you to abandon us because it gets rough. It gets rough a lot.
    -          Relationships. Fearing change in relationships because of the relentless needs. Along with that I fear losing myself. Period.

Community member, Michelle Howard said, “I hate the word fear. It has too much power over people.” While fear can permeate my subconscious it doesn’t rule my life. For me and most of the parents of special needs kids I have contact with letting fear rule us would mean that we have to pull energy from the job of managing the special needs our kids have and our time is too precious.

I’ve learned to live with fear. It’s something the forces me to grasp my reality and it’s sometimes what propels me to seek out and appreciate the joys.

Originally published in January 2011

Supporting your Sensory Child through Spring Break

March 14, 2011 in Featured, Insider Insight by Carolyn Dalgliesh

For “Sensory” kids – those with anxiety disorder, sensory integration dysfunction, learning challenges, ADD/ADHD, obsessive/compulsive disorder, high- functioning autism, Asperger’s syndrome, or other sensory challenges – this can be a time for year filled with uncomfortable experiences like changes in routines, lots of people visiting, and travel to unfamiliar places full of unfamiliar faces. As a professional home organizer and the parent of a sensory and a typical child, I know the importance of coming up with a few simple ways to provide extra support during the holidays to help your “sensory” child and the whole family enjoy the season. Pick the one or two things that are the hardest for your “sensory” child and create extra support to target those challenges.

Preparing for Changes in Routines

Preparing our “sensory” child for what is coming is a one way to support them in their day-to-day experiences all year round. This is especially true this time of year when there are frequent changes in their regular schedule. Create a visual support whenever possible before the change is coming. Explain in pictures and/or words the new schedule making sure to highlight what they have done before successfully or people that will see that they enjoy. Make sure to include a few options of what can be done when your child is overwhelmed or needs an break.

Visits and Interactions with New People

Spontaneous visits can happen very frequently this time of year. Try to set the expectation of more visits and social interactions. For younger “sensory” kids, try making a story about “People we see during the spring break and the holidays”. You can also talk about the social expectations of these visits in the book – saying “hi” and introducing yourself to the visitor. For older “sensory” kids, make a laminated sheet that explains what you expect them to do socially with visitors, how long they need to stay and “visit” and when they can go do their own thing.

Make Travel Easier

Again, preparation ahead of time is key to making holiday travel easy on yourself, your family and your “sensory” child. Give your “sensory” child a visual of where you are going via online sites, pictures of the family home you will be staying and the people you will be seeing. For younger sensory kids, make a trip book that explains what will happen during your travels. During your visit, set-up a space for your child that is their “escape and regulate” spot. It can hold the toys or things that are calming and relaxing for your “sensory” child.

Creating Routines during Vacation Week

The lack of regular structure during the holiday vacation time can also be a challenge for most “sensory” kids. Create a special calendar for vacation week and write in a loose schedule of what is happening. Have a list to the side of the calendar that will give your “sensory” child options of what you might do when during your free time. Be sure to write in the things that will hard for your child so the expectation is set and they will be prepared to be successful.

Take some of the stress out of the holidays for you, your family and your “sensory” child. Create a few simple supports to prepare them for new routines, to set expectations for frequent visitors and more social interactions, and to make holiday travel successful. Happy Holidays!

Carolyn Dalgliesh is the owner of Simple Organizing Strategies and Systems for Sensory Kids. She can be reached at Carolyn@simpleorganizingstrategies.com or (401)413-2811.

 

Supporting Young Adults With Learning Disabilities

February 28, 2011 in Featured, Insider Insight by Admin Dawn

Americans have been positively affected by the American with Disabilities Act (ADA), which mandates that certain services and assistance be given to people with disabilities. As effective as this law is, there are still many loopholes that fail to provide all the necessary support persons with disabilities need.  Special needs services provided by caring needs assistant providers can bridge the gap and provide people needing assistance with daily life issues a reliable resource. An adult with special needs wanting to live independently can face many obstacles. Being able to secure the help to make independent living a reality is a integral component of making an adult with special needs become self sufficient.

What Services Are Provided

Special needs support comes in various forms and can be delivered in such a way as to empower the special needs adult.  Wanting to have the skills to maintain their lives and live alone or with a roommate requires special needs adults to seek out resources and special needs providers. From securing a job for special needs adults to help with renting an apartment, managing their finances and staying on a budget, cooking healthy meals and other social skills the special needs assistant will provide the support needed.

Securing Employment

Most adults whether special needs or not need to have employment to support their lifestyle. For special needs adults procuring employment can present unique challenges.  Having someone that will walk with the special needs adult through the job seeking process, assist in completing the job application and help prepare for the job interview is paramount in becoming independent. Special needs assistants are trained and experienced in providing this support to those who need assistance.

Managing Finances and Staying on a Budget

Once the job is secured and the apartment or living space is a reality the special needs adults will have to maintain their lifestyle and special attention needs to be given to how to manage money and live within budget constraints.  In addition to paying rent or mortgage, the special needs individual will have to learn how to manage utility bills, buy food and clothing and set aside some funds to have fun.  Special needs counselors and providers will assist in integrating these life skills into the day to day management of independent living.

Special needs support is often provided by Life Coaches in an academic program especially designed to prepare young adults with special needs to live alone.  These same services can be tailored to the special needs adult on a one to one basis by a special needs assistant within your community. These individuals will not only provide all the services mentioned above but will also address local issues such as transportation navigation, involvement in community activities, and the preparation of healthy meals.  The personal connection with the “life skills coach” will build confidence in the adult with special needs and enable them to effectively maintain their independent living choices.

Barbara Richardson owns Elements Services: Special Needs Support Services provided at the home of young adults with various disabilities in the Chicago-area. Barbara offers Life skills/Coaching which includes Budgeting, Career supports and Social support. You can become a fan of Elements Services on Facebook here.

 

Adjustments in Special Needs

February 23, 2011 in Featured, From Julia by Julia Roberts

We’ve recently been trying to figure out what we’ll do with our son for 6th grade. Well, that’s not exactly true, we’ve been thinking about it for about a year. Sixth grade is still month away but with private schools needing to know by April 1ish we needed to start looking in January.

We have a good option for our public school. It’s large though. The director of special ed is a lovely woman who came to our elementary school to meet with us and discuss our son’s IEP/needs. She didn’t see any reason why they couldn’t serve him there. We also visited a private school (to the tune of $22,500/year) that is for students with learning differences. My son had a lot of anxiety over our discussions and it manifested itself in self hatred talk and thoughts of harming himself. It was with 100% certainty that I knew the root of the anxiety.

Anxiety is a tricky thing in our world. With delays, mental health issues and the fine balance of keeping things from exploding at any given time I thought it’d be good for get him over to the middle school to see what it was like. He was  resistant to going to a private school away from kids he’d know but after visiting the large school he’s open to another school choice. When we left the building he said, “No, it’s too confusing.” When I told him one of the schools we are looking at has just 8 kids in the 6th grade he smiled and said, “Yeah, I’d like a small class like that.”

He obviously needed to see it to adjust his thinking he had to go to the school where most of his friends will go. I still think he could but I’m not sure he’d flourish. He’d survive it but not without unique challenges of being different in a school of 400+ 6th graders. We’re still searching and I’m sure we’ll come up with something because we just will.

We’re a resourceful bunch, special needs parents are, aren’t we?

We have a world of adjustments we make from the second we hear of an issue/diagnosis to selecting where we’ll live to making decisions of what to push for and let go of with educators, friends and family. We’re constantly making adjustments. I know when you have kids you know you’ll have adjustments. Add in the special needs factor and it just makes things more complicated.

I am not sure when I realized my life would be about making adjustments about everything…including a style of parenting that isn’t necessarily 2nd nature, maybe a year into learning about the kids recessive polycystic kidney disease. When things are stable and moving along I forget the amount of adjustments we have to make nearly everyday. Adjustments have become so much a part of what I do, it hits me when we have a big adjustment.

Like middle school. Middle School + Special Needs = ADJUSTMENT. In a big way. I’m not ready for it but with special needs we don’t really have time to get ready, do we?

What’s your latest adjustment relating to special needs?

Joy through special needs

January 27, 2011 in Featured, From Julia by Julia Roberts

The week my daughter was born I had a lot of sadness. I also had greater joy because I was celebrating her birth! A welcomed and loved addition or our little family, I sent an email to friends the day after we got home from the hospital. I said something about welcoming our beautiful daughter into the world. I mentioned her amazing eyes, her long finger and toes and I said how happy we were she joined our family. In the second paragraph I told everyone who loved us about her failing kidneys and said we were sad about that but we needed for people to celebrate her life.

I think, without knowing it, I set up how I wanted to embrace the joys of this new life of parenting kids with special needs before the sadness.

Is the sadness still there? Yes. But are the joys I have sweeter? Probably.

When we asked the community to share their joys I realized that there was a similar theme. We all shared in the miraculous joys of daily mundane (not to us) events like walking and eating. We have and continue to celebrate the milestones our children with special needs. We particularly like typical events like siblings who play and learn from each other, when our kids make friends and when they laugh and smile.

We like to see our children thrive and have pride. Milestones come in many forms. One mom said she got to witness her son learn how to open his eyes – fused since birth – and thought, “Who else gets that privilege?” One mom said, “I once heard that when you have a child with special needs, you don’t just celebrate milestones, you celebrate “inchstones.”

Five or more years ago that I realized I do love to witness the little things (milestones especially) and I was (am) probably even smug about that fact. I reason that my challenges should at least afford me the opportunity to have something over my friends who have children with typical development. I probably should feel bad but I do not.

You know what? I watch my daughter jump up in the air about 4 inches on both feet. That alone probably does not seem that spectacular but it took her nearly 3 years of trying. Therapy. Falling. Frustration. Laughing. When my son, who struggles with confidence, is even a little bit proud of himself, even just a tad, I feel joy. Immense joy.

I’m not afraid to admit the struggles we face make the joys in our life sweeter; sweeter than those of you with typical families.

Release The Guilt & Just…Rest

December 2, 2010 in Inspiration by Michelle Howard

Michelle Howard and her son

Michelle Howard and her son

His hands were clammy and sweaty. He was also a little jittery.

Otherwise, CJ seemed just fine. After all, he was always a bit shaky so off to school he went.

Later in the day, the school nurse called with her concerns of CJ’s physical demeanor.

Could it be his blood sugar? His thyroid? Was it neurological?

According to the nurse, he’d been quite jittery for the past two weeks. “TWO WEEKS?? Really? How could I not have seen this? “

Because of the cerebral palsy, he’s always shaky but I had not noticed an uptick.

Fast forward to that evening and CJ is not eating, not drinking, not playing nor sleeping. I rushed him to the ER and by that evening he was seizing something fierce.

What Kind of Mother Am I?

Moms are expected to know what’s going on with their children at all times. So, why didn’t I (super mom or so I thought) pick up on CJ’s increased jitteriness?

At first I felt really guilty but experiences like these have taught me. Sometimes I miss things. Does that make me a bad mom? No. It makes me human.

The reason the nurse picked up on CJ’s increased shakiness is because she doesn’t see him every day. She’s able to notice the slightest change much easier. I can accept that and thank God, there are others in our limited circle that has the ability to notice when something’s just not right.

Give Yourself a Break

There will be times when circumstances will flow out of your control. Your child may experience a health crisis and you’re not there. You may not receive the response you desired from a medical professional or educational authority.

The obvious reaction is to feel guilt or fear. You may even question if you could have done more. Sometimes you could have and sometimes not. That’s not the point.

Either way, allowing a negative emotion like guilt to rest within you does nothing to help the situation. It also doesn’t help you to prepare for future trials and challenges. So, give yourself a break for simply being human.

Rest is Good

After CJ’s grand mal seizure (apparently the increased jitteriness was paving the way), he was exhausted and so was I. We both slept.

Taking time out to rest after a health crisis is extremely helpful – physically and mentally.

So, the moral of the story is just because you’re a caregiver, doesn’t mean you will always make the best choices for your child. You are human so release the guilt, forgive yourself and just…Rest.

About the Author: Michelle Howard Smith helps other caregivers to find ways to prevent and relieve stress through her blog, Stress Relief for Caregivers. She’s also created the Stress Less Recipe, a compilation of tips and advice to help caregivers keep it all together.

Assessments In the Driver’s Seat

November 3, 2010 in Ask the Special Ed Lawyer, Insider Insight by dianaglick

The most important thing to remember about assessments is that they not only determine eligibility — they also drive placement and services.

A good and appropriate initial assessment can be used by the IEP team to determine whether a child is eligible for special education. My prior articles have described the requirements for eligibility, in short: a qualifying disability and a showing that the disability interferes with a student’s ability to access his or her education. However, that initial assessment will also set the stage for the placement and services offered by the district. While the eligibility category (such as autism, specific learning disability, or a speech/language impairment) will signal the main interventions to be provided, an IEP should include services necessary to address all of your child’s areas of need.

For example, if a child is eligible for special education as a student with Other Health Impairment because of a diagnosis of ADHD, he should receive services designed specifically to address the challenges arising from attention deficit. However, it is possible that in the scope of the assessment, the evaluator also identifies some problems with social/emotional functioning, such as withdrawal, anxiety or depression. These issues should be addressed as well, usually by an initial offer of school-based counseling, or a social skills groups for students.

When Assessments Steer You Wrong

Clearly, when an assessment is used to conclude that a child is not eligible for special education or not eligible under a certain category that you may be seeking, this can be a frustrating setback in your advocacy efforts. However, the worst assessments are the ones that provide absolutely no useful information about a child. Even if you disagree with a particular recommendation or conclusion that the district may have drawn from an assessment, the data itself can still be very helpful in understanding your child’s educational strengths and deficits.

Some of the more common issues that that arise with assessments are when the district fails to use an appropriate testing instrument, fails to properly score a test, or fails to administer or conduct any testing in an area that is a known issue with the child. To expand upon the example above with the child who suffers from ADHD, if that child’s teachers have noted troubling behaviors in the classroom that they believe could be emotionally-based, or if his parents are raising concerns about his mental health status, this would be considered an additional area of suspected disability. When his triennial re-evaluation rolls around, the district should absolutely include some kind of assessment to address these concerns.

Federal law sets forth several requirements for evaluations, including that they be conducted at least every three years, but not more than once per year unless agreed upon by the IEP team. A full assessment should include a variety of testing instruments and tools, so as not to rely on a single measurement of a child’s ability. In addition, standardized tests should be administered in accordance with the publisher’s instructions by knowledgeable and qualified personnel, should be given in the language of the student and should not be racially or culturally discriminatory. One key requirement is that the child must be assessed in all areas of suspected disability.

Getting Back on Track

A major part of my practice involves helping parents navigate a situation in which their child has not been appropriately assessed. The law allows parents to obtain an independent educational evaluation (IEE) at public expense when they disagree with a district assessment. A key point to note: there generally must be an assessment with which to disagree. While there are exceptions to every rule, if the district simply fails to assess and you take them to court, they will likely be given an opportunity to conduct an evaluation before having to pay for a private one.

If you request an independent educational evaluation, federal regulations provide the district with two choices: they can either agree to your request or they can file for due process to establish that their assessment was appropriate. In most cases, the district will determine that it is more cost-effective to pay for an independent assessment than to incur the expense of a due process hearing against the parents. However, it is important to know that the district may file for due process in response to a request for an IEE.

Many times, a district will deny the parents the requested IEE, but fail to bring due process. In this situation, parents often seek out a private assessment themselves and then request that the district reimburse them. They may have to file for due process against the district in order to obtain this reimbursement.

If the district agrees to fund an IEE, parents should be given the opportunity to negotiate with them regarding the independent professional who will conduct the evaluation. It is important to go with an assessor who is truly independent of both the parents and the district so that all sides feel they are getting an objective opinion. Ask other parents in your community for references in order to identify the good assessors in your area.

Once an independent assessment has been conducted, the district should convene an IEP meeting to consider the results of that assessment. If the independent assessor draws different conclusions than the district, this may strengthen the parents’ argument for a particular category of eligibility, a particular placement or additional or different services. Parents may use the independent assessment in a due process hearing against the district to establish that the district’s assessment was inappropriate or that the child has been denied services because of the district’s failure to identify his or her needs.

While trying to obtain an appropriate assessment of your child can be a frustrating experience, the law has built in a mechanism for a second opinion, which in most cases I recommend pursuing. Having more information about the student’s strengths and deficits leads to better team decision-making, better educational planning and better outcomes for the child.

Meet Chuck, riding Shotgun on the Coffee Klatch Team

October 19, 2010 in Around the Web, Resources by Admin Dawn

Can you introduce yourself and let us know your involvement in the special needs community?

My name is Chuck Walley and I am the Sunday evening and Wednesday evening co-moderator of The Coffee Klatch. These duties include riding shotgun with Marianne while she conducts here interviews and I sometimes conduct them myself. Occasionally, Marianne hands the keys to me and I moderate where my experience lends itself to the topic.

My roles in the special needs community consist, primarily, of advocating for my 15 year-old son, who was diagnosed with Asperger’s Syndrome.

How did you get involved in The Coffee Klatch? Do you have a specific role there?

I began using Twitter in the spring of last year and I quickly crossed paths with Autism advocates, one of them being Elyse. Her blogs about her sons described my son to the T so we formed a Tweeting relationship. Elyse led me to The Coffee Klatch, where I quickly found many kindred spirits.

What are your goals in your work at TCK? What do you hope people get out of it?

My goal is to evangelize The Coffee Klatch to as many people as possible. We have an outstanding network of experts, advocates and cheerleaders available to anyone for the asking.

Conversely, I hope to make lifelong contacts and friendship with the wonderful people involved with this network. The resiliency, drive and passion exhibited by these parents, experts, teachers and therapists continually inspires and amazes me.

How has being part of TCK changed your personal life? Do you have an anecdote to share about that?

INSPIRATION. My son has Asperger’s Syndrome and raising him is fraught with challenges. However, the parents I’ve met through The Coffee Klatch continue to inspire, guide and challenge me.

During a “fathers only” session we were discussing what we’ve learned from fathering children with special needs. One father wrote, and I’m paraphrasing, “Being the parent of a child with special needs requires you to set aside your fear and embarrassment and step up to learn and better yourself for your child.”

Is there a particular show you’d really like to call our attention to? Why was that one you want to make sure your readers don’t miss?

It is the very “fathers only” chat – it was powerful and inspirational. Fathers today are breaking down barriers and we are not afraid to talk about the issues we face on a day to day basis.

Kevin Michael Connolly: Staring Back

September 1, 2010 in Future Glimpse by Admin Dawn

Kevin Michael Connolly is a world-traveler, a scholar, a photographer an author and a world-class athlete. He was also born without legs. We spoke with Kevin about the ways his parents inspired him, how athletics helped his confidence and why he doesn’t consider himself an inspiration.

Double Take turns the tables on people who are looking at you. As a child, how did you come to terms with the staring? Was it a process? How did your parents help you handle it?

I would say that I was reasonably fortunate that I grew up in small town, and after my first few years around the community, the staring subsided as the novelty died off. Even as a small child, I enjoyed being the center of attention – and with how normally my parents treated me growing up, I never really came to understand that being stared at could be a “bad thing.” It wasn’t even until I was out of the country and on my own that I began to realize the level of frustration that it could sometimes cause.

In the third chapter of the book, my Mom introduces a very simple game to me called “What If”, in which she posed a series of hypothetical scenarios, and it was my job to try and figure out what to do in any given situation. I think it was this early exercise that helped with my problem solving skills, as well as my ability to deal with the stares later on in life.

You were a silver medalist in the 2007 Winter X-Games. How did your athleticism growing up contribute to your self-esteem?

I also received a bronze in this year’s X Games! I think that just like anyone growing up, athleticism allowed me to find something that I was good at outside of school and team sports. I think that everyone – especially at a young age – needs to have at least one thing they feel they are good at. It’s what helps you define yourself at a young age – and I think it was that early sense of personal definition that helped give me a confidence in my teenage years.

You mention (in other interviews) your frustration with being pegged as “an inspiration” or “heroic” because of your physical challenges. How does this perception from others hinder you? How have you learned to separate how others see you from how you see yourself?

Yeah, I’ve really made an effort to make that separation, and I think that through the writing and publishing of Double Take, I have largely come to terms with that distinction. I think they main issue that I take with the “heroic” and “inspirational” labels is that it sometimes comes across as another, slightly more positive way, of calling someone disabled. Having been born without legs, I’ve never known any sense of contrast or ‘loss’, and as a result it feels like a bit of a misnomer to labeled as an inspiration for simply existing. One thing I talk about in the book is this idea that the dualism of “disabled” and “abled” doesn’t really exist. Instead, I believe that it is more of a fluid, moment-to-moment spectrum that is largely dependent on our ability to carry out an action at any given time.

For instance – when I’m carrying my board and camera up a big flight of stairs in Ukraine, I could be considered disabled because I’m less able than those around me to complete the given activity. However, when I’m passing those same people a minute later on my skateboard – thus performing more efficiently than they – is it really fair to leave on such a label. I think that any static labels – whether its ‘disabled’, ‘inspirational’, or ‘heroic’ – are really for me. I prefer the more practical – ‘no legs.’ Simple, practical, and no false expectations!

People have a tendency, too, to infantalize both children and adults who have a visible or apparent disability. How can parents help their children to confront this and challenge it?

My Dad would probably say “make sure to give ‘em a kick in the ass” and I don’t know if I would disagree. I think that the best thing my parents did from a very young age was challenge me both physically and intellectually. Between my Dad’s hiking trips and wrestling matches, and my Mom’s games of causality – I was forced to grapple with, and compensate for many of my physical shortcomings from a young age. My parents were always present in my life, but very adamant that I figure things out for myself. Whether it was hopping onto a countertop or hiking my way through a forest – my folks always thought it would be best if I figured it out. I think that sort of a self-sufficiency is probably the most important thing to drill into someone at a young age. That, and being proud of your independence – so that when someone questions it, you can give them a kick in the ass.

You can see more of Kevin’s work at his flickr page. You can also read his blog and follow him on twitter. We’ll leave you with one of the videos from his YouTube channel showing you what it’s like to get through a crowded city on his skateboard.


Five Benefits of Growing Up With an Autistic Sibling

August 19, 2010 in Special Needs News by Admin Dawn

Every sibling relationship is unique, but having an autistic child in a family can impact the entire family dynamic. While much attention is paid to the challenges and difficulties faced by parents and siblings of autistic children, growing up with an autistic sibling also offers many advantages and hidden treasures that can help shape an individual’s life and character.

via Five Benefits of Growing Up With an Autistic Sibling – Century City News.

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