Category: Special Needs

LEARNING DISABILITIES: COLLEGE ADMISSION TIPS

by Mandee Adler

Almost every accredited university provides support services for students with learning disabilities. These services vary in quality and extent from school to school.  For students with disabilities, it is imperative to find the school that is the best ‘fit’ in providing programs, policies, procedures, and facilities that meet your needs.

Below are some tips on choosing a school that suits your needs and goals — and what you need to do to make them choose you.

Review Your Needs

Sit down with a knowledgeable adult or counselor and review your needs. The goal is to better understand how your disability will influence your college choices. Questions to answer include:

  • How does my disability affect how I learn?
  • What are my academic strengths?
  • How do I learn best?
  • What strategies do I need to help me learn?
  • What facilities may I need?

Once you have these questions answered, the next move is to begin building a college list.

Investigate and Choose Schools

Students with disabilities should follow the same steps for choosing and applying to a school as any other student.  Preliminary research can be accomplished via internet searches, visiting colleges websites, checking out college guides, going on college visits, attending college fairs, and asking around.   Make a list of all the schools that interest you.

Then make a separate list of what your college must have to accommodate your needs.

For each of the schools you are interested in, contact its disability services office to determine if the college has the services and accommodations that can meet your specific requirements. Most colleges have an office that provides services to students with disabilities, or a person who coordinates these services.  Once you contact the office and get your questions answered, put a check next to each school on your list that can accommodate your needs.

Questions for the disability services office may include:

  • Are basic skills, study skills, time management, or organizing classes offered? Are they available for credit? Can they be counted as hours toward full-time status? What is the cost?
  • Is there a support group for students with disabilities?
  • Is there adaptive technology available?
  • How many disability specialists work with the program full time and part time?
  • Does the school offer specialized academic advising for students with disabilities?

Make sure to visit each school’s website for college disability services to get an idea of eligibility requirements, resources, services and accommodations, documentation required, available academic support and policies.

Make Yourself a Strong Candidate for Admissions

Do this by succeeding to the best of your abilities!

It is important to know that a school cannot deny your admission because of your condition if you meet the basic requirements for admission, including application deadlines, grade point averages, and college entrance exam scores. In fact, you don’t even need to tell a school you have a disability on your application, unless you want an academic adjustment.

What you must do is keep your grades up and become involved in extracurricular activities—just like any other student. Disabled or not, students must meet school standards for admission.

To Tell or Not to Tell

Whether you should reveal your disability early in the admissions process is up to you. The best filter may be: Will it hurt my chances?” or “Is it helpful to know?”

Disclosure early in the process is often recommended for applicants who need to provide context. For example, a student with disabilities may need to explain why a standardized test score appears low when compared with outstanding grades. However, applicants with strong grades and test scores should think twice before disclosing any learning issues, especially if there were no academic repercussions or if they are no longer relevant.

The Application

If you decide to disclose your disability, you can either describe your disability in a letter to the appropriate school personnel and keep a copy of the letter, or call attention to your disability in your main essay. If you choose to disclose your disability in your main essay, the essay must be positive and show how you can succeed. Do not try to write an essay designed to make an admissions officer feel sorry for you; this doesn’t work.

Testing Adjustments

Students with disabilities can receive special accommodations on standardized tests including the SAT, ACT, SAT Subject Tests, AP Exams and PSAT/NMSQT. As a student with a disability, you can request accommodations when you schedule your exams.

Be prepared to send copies of your psycho-evaluation, testing records, and any other assessments of your disabilities directly to the school or testing agency.

Stay positive

The college admissions process can be daunting for any student, but it can be entirely manageable if you start early and take it step by step.  The more information you have, the more “educated” your decision can be.

FOR MORE INFORMATION

International College Counselors is an independent college admissions company that helps students in the U.S. and all over the world find, apply to, and gain acceptance into the college of their dreams. The college counselors are dedicated to helping students and their families successfully navigate the college admission process. For more information on International College Counselors or to contact an expert college counselor, please visit www.internationalcollegecounselors.com or call 954 414-9986.

Medicaid Waiver Programs – Learn!

by Jane Kaufman

There is this thing down here in Florida, not sure if it’s everywhere so I hope I don’t sound ignorant. It’s called the medwaiver list and it’s something you need to get your child with a disability on so they can get some government funding. Literally speaking: Medicaid Waiver Programs allow recipients to ‘waive’ institutionalization and instead choose to direct services to assist them to live in the community. It is administered through the Agency for Persons with Disabilities (APD). I have avoided doing this for a long time because there is a waiting list of thousands and no real money has been devoted to it yet. I have felt guilty about not doing this and I was somewhat pleased to learn that many of my “autism mommies” have not done this either. There is coordination of paperwork and an intake meeting that involves bringing your child. I once went to a meeting about doing this years ago but somehow I felt it wasn’t worth my time. A close friend of ours and terrific advocate recently called me out on this. He let me know it was not ok to avoid the list or not get your kid signed up. So I faced it, went to the website downloaded the application and sent it in.

Not long after I received a letter stating that I had to schedule my intake meeting, bring a long list of documentation and Bryan. Ok, I can do this, no big deal. I was feeling proud of myself and grateful to our friend for giving me the nudge I needed. I don’t typically even need a nudge for anything, but it was one of those risk/reward assessments I do in my head so it got pushed down in priority.

Bryan and I went to the intake meeting last week. We had a 9am appointment and often Bryan is anxious if he doesn’t know what to expect. However, alone time with Mommy on a weekday morning, without a doctor’s appointment is warmly accepted by Bryan and so he was calm and delicious on the drive to Fort Lauderdale. We were taken right away and we sat with the Human Services Counselor, a very nice woman, in her tiny cluttered office. She went through all of our papers and let us know what was needed as far as follow up paperwork. Then…… she decided to ask Bryan a bunch of questions. Not one or two questions, but many, about 10. Here is the kicker, he answered them all calmly and correctly. Now, maybe for your kid this is easy, but not for Bryan. The questions were not complex, “what is your birthday”, “what is your address, phone number, etc.”. These questions were questions that all teenagers should be able to answer, and I was confident when sitting there that Bryan did in fact know the answers. The issue really is more about whether or not he would be forthcoming with the information, if the speaker would ask the questions slowly and clearly enough for him to understand and how many questions would he tolerate before he screamed or said “no more”.

Bryan has a saturation point where he will no longer stay tuned in and when you reach it, trust me, you will know. But on this day, for this woman, who in essence was somewhat gauging his disability, he answered questions easily, correctly and confidently. He is often very soft spoken when answering questions, although quite loud most other times, and for this interview his tone, voice level, were appropriate. At the end she said to me, “he was so well behaved”. Now, the real true mother in me was beaming with pride. I have taken him to dozens of these types of things, interviews, psychologists, speech therapists, etc. where he has not answered or provided an answer that was completely inappropriate. But, the inner comedienne, the inner autism advocate mom in me, was saying NOW you answer everything right? Now, when it’s ok to be “disabled” or where some modicum of judgment by this woman might put your paper on one pile (needs lots of aid) vs. another (pretty good, don’t worry about him) and now you have to be sooooo awesome. It’s just irony and of course the real mom snapped back and felt proud.

We walked out, and as always, Bryan put his arm around me and said “I did a great job with the lady”. We got into the car and I took him to school. During the ride Bryan was somewhat quiet. I wanted to ask him some things but he is rarely quiet so I try to leave it alone. I took him to the front door of school and signed him in. I watched him walk away and thought to myself how far we have come, how he senses from me when something is important or when we are doing something for his benefit. He knows that if Mommy takes off work to take him to an appointment it means it’s important. He also knows time together on a Tuesday morning is special, just like him.

Autismautism awarenessautism spectrum disorderchildrendisabilitiesfriendshipmother,observationsparentingPDDsiblingsspecial needssportssummer campUncategorized

Selecting Guardians and Trustees for Special Needs Children

by Elizabeth Camp

Your will and trust documents may represent your best-laid plans for your special needs dependent. But such documents are only as good as the people you trust to administer them. By selecting suitable stewards for that financial blueprint, you can help ensure that those plans do not go astray.

Here are some guidelines that may help you when you designate your trustees and guardians.

  • Select your stand-ins with care. Your trustees will fulfill the roles of guide and protector when you can no longer do so. You should assure yourself that the people you select are willing, prepared and able to seek the kind of outcomes you would have sought had you been there.
  • Appoint fiduciaries for your dependent’s valuable assets. A financial guardian should not only act to protect your dependent’s financial assets, but should be prepared to do so according to the highest standards of prudence and forethought.
  • Prepare to confront the unpredictable future. No one can really foretell what twists and turns may sway a person’s life years or decades into the future. Many parents improvise virtually every day to balance the demands on their families and themselves and to meet the needs of all their dependents. You will be selecting agents who will continue to do so in your stead.

The Jack or Jill of All Trades

As the architect of your plan, you have broad discretion in selecting the individuals who will act in your stead. You may choose people you know well: a business associate you’ve worked with closely or a relative in whom you have strong faith, such as a sibling or spouse. You can also select a professional practitioner whose skills might be especially useful to your purposes, such as a lawyer or accountant. Or you can designate a bank or trust company to act as a corporate trustee. Each option presents a unique balance of benefits and concerns.

Whoever you do choose, keep in mind that the person acting as trustee or guardian for a special needs dependent may be called upon to wear many hats in different circumstances. As your surrogate, a trustee or guardian can be expected to weigh in on the medical, educational and psychosocial issues affecting your special needs child. He or she may also confront the legal, tax, investment and administrative questions inherent in managing both trust resources and the day-to-day affairs of someone who may not be able to do so for him or herself. The ideal surrogate will able to bring specialized expertise to these circumstances and should also be able to deliver that expertise loyally, decisively and impartially.

Insourcing or Outsourcing: Weighing the Differences

The closest source of potential trustees and guardians is your family and friends. A personal confidant or relative may already have a well-established relationship with your intended beneficiaries and a detailed knowledge of the unique circumstances in your bequest. That familiarity can provide the context needed to interpret your wishes in your absence most effectively. It can also lay the groundwork for a strong long-term relationship between the trustee and the beneficiaries. However, someone chosen solely on the strength of personal relationships and intimate knowledge may lack the training or skills needed to act impartially and efficiently in the face of duress or emotional entanglement. What’s more, a friend or relative acting as a trustee might have a conflict of interest or be unable to devote sufficient time to the duties of trusteeship, and these potential deficiencies may not become readily apparent for some time.

You should also consider tapping into existing relationships with licensed advisory professionals such as lawyers and accountants. A professional practitioner who has had significant involvement in your family’s affairs may offer many of the same advantages as a personal associate, such as direct acquaintance with beneficiaries and historical knowledge of unusual situations and special needs. Such advisors may also have the professional distance needed to remain dispassionate under difficult circumstances. However, like a lay trustee, an individual professional’s tenure may be subject to the vicissitudes of his or her life and may ultimately be unavailable at some critical future juncture.

Outsourcing to a Corporate Trustee

A bank or trust institution can act as a corporate trustee. As such, it can provide a high level of impartiality and detachment as well as ready access to specialized technical, tax and legal expertise. An institutional trustee can also offer a high level of continuity and stability, since its ability to serve is generally not dependent upon any single individual. However, an institution cannot maintain the same level of intimate knowledge as a family insider about your intentions or your beneficiaries’ needs.

You should keep in mind that different types of trustees may be subject to different rules, insurance and licensing requirements. Lawyers, for example, must meet the terms of their state bar association licenses when they act as trustees. Banks may be subject to regulatory audits and documentation procedures. Also, professional trustees are often held to the highest fiduciary standards under the “prudent investor” principle. Simply put, that means that trust assets would have to be managed according to the best practices of the asset management profession, with special attention to appropriate risk management and diversification.

Other Considerations for Trustees and Guardians

Here are some additional thoughts that might apply to your circumstances:

  • Family members may not always be eligible to serve as a trustee. Although federal law creates a specific framework for special needs trusts, appointment of trust and guardianship officials generally is regulated by state law. Each of the 50 states has its own rules. For example, some states allow anyone to function as a trustee. Some require that the trustee be bondable. Some states allow family members to act as trustees for any assets, others only for assets that are not already owned by the beneficiary. (Assets owned by a beneficiary may include proceeds from lawsuits, insurance policies and inheritances already received; trusts that contain these assets are commonly called self-settled or first-party trusts.)
  • Guardianship and trusteeship should be seen as separate roles. Guardians and trustees have very different perspectives on the life and needs of the beneficiary and also have different responsibilities for elements of the beneficiary’s well-being. The person in the role of guardian may derive some benefit from potential trust expenditures. The person in the trustee role is responsible for vetting trust expenditures. Putting one person in both roles creates a heightened potential for conflict of interest and self-dealing.
  • You can create checks and balances using co-trustees and trust protectors. When you design a trust you can split the duties of the trustee so that different people have to monitor each other be take important actions jointly. For example, you can put spending policies in the hands of a family member closely attuned to the needs of your beneficiary, but actual fiscal control in the hands of a professional more sensitive to issues of financial management and the intricacies of benefit law. You can also assign someone the role of “trust protector,” whose function would be to monitor and audit the activities of the trustee. A designated trust protector generally has authority to hire or fire a trustee for cause, if needed.

Ultimately, your choice of trust officials will have great influence on whether your trust arrangements achieve your long-term goals for your special needs dependent. Let me help you sort through all of the competing considerations and find the path best suited for your needs.

Morgan Stanley Smith Barney LLC (“Morgan Stanley”), its affiliates, Morgan Stanley Financial Advisors and Private Wealth Advisors do not provide tax or legal advice.  This material was not intended or written to be used, and it cannot be used, for the purpose of avoiding tax penalties that may be imposed on the taxpayer. Individuals should consult their tax advisor for matters involving taxation and tax planning and their attorney for matters involving trust and estate planning and other legal matters.

 

If you’d like to learn more, please contact Elizabeth Camp at htttp://www.morganstanleyfa.com/camp

 

Article by McGraw Hill and provided courtesy of Morgan Stanley Financial Advisor.

 

The author(s) are not employees of Morgan Stanley Smith Barney LLC (“MSSB”). The opinions expressed by the authors are solely their own and do not necessarily reflect those of MSSB.  The information and data in the article or publication has been obtained from sources outside of MSSB and MSSB makes no representations or guarantees as to the accuracy or completeness of information or data from sources outside of MSSB. Neither the information provided nor any opinion expressed constitutes a solicitation by MSSB with respect to the purchase or sale of any security, investment, strategy or product that may be mentioned.

 

Morgan Stanley Financial Advisor(s) engaged Life Meisters to feature this article.

 

Elizabeth Camp may only transact business in states where she is registered or excluded or exempted from registration http://www.morganstanleyfa.com/camp. Transacting business, follow-up and individualized responses involving either effecting or attempting to effect transactions in securities, or the rendering of personalized investment advice for compensation, will not be made to persons in states where Elizabeth Camp is not registered or excluded or exempt from registration.

 

Investments and services offered through Morgan Stanley Smith Barney LLC, member SIPC.

 

CRC 579823 [2/13]

 

 

Focusing the Lens

by Jane Kaufman

Unless you live in a place where there is no media, you know it is Breast Cancer Awareness Month. There are pink ribbons and items everywhere and for those of us that are over a certain age, it reminds us to go get a Mammogram and not be complacent about our health. (Just so you know mine is scheduled for November 5). But to me, the interesting thing about this month is that it’s not my month. My month is April. What do I mean by that? My month is Autism Awareness Month which is April. World Autism Awareness Day is April 2 and we light it up blue that day. Our ribbons are a medium blue. So seeing all of the pink out now I am reminded that each of us has a cause that is near to our hearts; either we know someone afflicted by a disease, disorder, or condition, or we are sensitive to those we care about and their concerns.

Raising a child with autism is not in any way like having breast cancer. However, humanity itself allows us the flexibility, the mental space, to care for others even though we have no true sense of what they are going through. We have the ability to empathize, sympathize and offer solace. I work with several women who have survived breast cancer. I am amazed by their resilience and tenderness. I am also amazed how these women often reach out to me to help me when I’m feeling down about autism. So you see, overcoming something or learning how to cope is not one dimensional.

Learning to deal with the unimaginable, the unknown, and the unforeseeable may be a secret club, but it’s not exclusive to your plight.  I also notice the reciprocity of support, will you support my breast cancer event and I’ll support your autism event?  There is a symbiotic effect that is both necessary and comforting.

I had a friend who passed away a few years ago from cancer, not breast cancer per se, but cancer of the lymph system. He and I had grown up together and although we were not in each other’s lives on a daily basis we had an awareness of each other’s lives. About a year after Bryan was diagnosed with autism and he was diagnosed with cancer we spoke for the first time. There was an undercurrent to our conversation, an unspoken, did you ever think things would work out like this for us? So during this month of breast cancer awareness I am going to focus on just the awareness part; the awareness of others and their concerns and reminding myself to adjust my lens away from the myopic setting.

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Are you smarter than a fifth grader?

by Jane Kaufman

 

I’m beginning to wonder if I am. Jason is in 5th grade. Now don’t get me wrong, I can do all of the math, science, etc. I am not concerned if I am smarter than him in 5th grade academics, but not sure I am smarter than him in life. So all of the challenges you face as a parent of a kid on the spectrum are incredibly taxing and can wear you down mentally and physically. But, the typical kid, with his savvy, his sarcasm, and his ability to push your buttons …  well, this requires a different kind of parenting.

If your child is a mirror image of you (or me in this case) let’s just say I’m totally screwed. This kid has the ability to demonstrate down to the specific breath every bad quality that I have modeled for him. He gestures, sighs, gets frustrated EXACTLY the way I do. If it wasn’t so dead on, so pathetic to watch, I would laugh or congratulate him on a great impression. He uses expressions to “negotiate” over homework that he hears between Earl and me and I cringe the whole time. So I think to myself, hmm, I have to outsmart this kid. I need to be one step ahead of him in the power struggle they call growing up. There are so many issues here.

I need to get him to do his homework and take pride in his work. These concepts seem to be mutually exclusive yet shouldn’t be. I always cared about my homework, Earl always tells him how he didn’t and regrets it. Nope you cannot impart experience to your kid, we all know it doesn’t work that way. I need to change up the strategy clearly, from threat of punishment to incentive. Easier said than done.

He knows how to play me. He knows where the bodies are buried. Last year he let me know that he needs more attention from me at night and clearly attention equals doing homework together. I am seriously happy to comply. I feel if I spend time with him to show him that  homework is important to me, he will try harder. Um, not so much, apparently. Instead, it’s become his time to test me.He is so easily distracted and he knows that frustrates me. FOCUS!!!! There is a subliminal how much mommy time is available and how long before I can frustrate her thing going on here? How can I monopolize her time away from Bryan who seems to get all of the attention I want?

I know he does not intentionally set out to do this; he is a good-natured, sweet kid. When we read together he holds my hand or snuggles up to me. He tells me he loves me every morning when I drop him off and gives me a warm, sincere kiss and hug goodbye. However, five minutes into reading he says he’s bored. We signed up to do the Reading Promise which is 100 days in a row of a parent reading to a child. The school talked about how you will bond with your kid and how they will want you to go on way past the required time. I even took the book we are reading together on my business trip last week to so I could read to him over Skype. Nope, he is not interested. He sets a timer, we are required to read for 11 minutes (one minute per year for kid’s age) and even before the time is up he says he’s bored. Damn cuz, that’s just cold. However, he would like me to spend hours watching him play Minecraft or Sims.

So what’s my point? Well on the one hand, I guess I am just experiencing behavior and challenges I have not had with Bryan, due to autism and his inability to communicate in a way that will manipulate me and guilt me like Jason can. It is a revelation in a lot of ways. However, as most of my parenting experiences go, it makes me think about Bryan and his need for attention too. It is easier to put him off since he really won’t complain about it. He is efficient, comes home opens his books and does his work. Autism, at least for Bryan, means you follow rules and homework is done when you come home. You gotta love it!!

Last night on the Daily Show (which I love, not just for Jon Stewart who I think is so awesome but I also loved John Oliver all summer) Jon Stewart had on David Mitchell who translated a book by a 13 year old Japanese boy with autism. To listen to David and Jon exchange thoughts about autism and autisms as David said, (I love that by the way) I was touched by the sincerity in which Jon Stewart expressed interest in autism. I know he has been involved in many fundraisers (another reason why I geek out over him). I was also reminded, through their discussion about the boy in the book’s awareness that his autism stressed out his family, that Bryan needs reassurance that spending time with him is valuable too and that he is not a burden, he is a joy. Probably a good idea to watch the Bar Mitzvah video with him again.

everythingisathing | October 4, 2013 | Tags: Autismbehaviorparentingschoolspecial needssupport| Categories: anxietyAutismbehavioral concernscampdisabilitiesfamilyFrustrationHumorkids,motherparentingpsychologypubertyspecial needsstereotypessupportUncategorized | URL:http://wp.me/p1Ax2u-r3

Puberty in autism…

by Jane Kaufman

So here’s the thing, puberty sucks. Bryan has been showing signs of puberty for a long time so it’s not as if any of this is new or shocking, but I guess since he can communicate better and because he is more aware, we were able to coast just a bit. I know saying puberty sucks is not a revelation to anyone with a teenager but there are unexpected things coming from Bryan. I have to say, for the first time in a long time, I’m really not sure how to properly address these things. He says a lot of things now to be provocative, to get our attention, or just because he can. I think I was romanticizing him in my head and his behavior while he was gone for the summer, that he might come back more in control and more articulate and more forthcoming with language. That is an autism rookie mistake and I am learning my lesson. I always need to remind myself, hey Jane you dumb shit, he still has autism. Damn it sucks.He is also overly emotional at times. There are a whole bunch of things that he is saying that are making us cookoo for cocoa puffs. For example, and these are direct quotes:

  • I don’t say f@#$%^&ck.
  • Casey is dying, it’s funny. (Casey was our 14 year old cat we had to put down in June).
  • Blue Clues are for babies.
  • You’re mad at me. It’s funny.
  • Son of a bitch.
  • Show me your mad face, happy face, frustrated face, etc. (this all stems from Snow White and the 7 dwarfs).

While Earl and I curse at times, we try to let the boys know that they shouldn’t or when it is or is not allowed. When Bryan does this he starts this inappropriate laughing and can’t get out of his own way. It is maddening. Another thing that is driving us nuts is that he likes to watch what we call “baby shows”. These include the Wiggles, Blues Clues, and Barney. I didn’t like these when he was little and I sure as hell don’t want to hear them now. I suppose there are two schools of thought with respect to watching these shows. On the one hand, what’s the harm? They are innocent and soothing. On the other hand he is 13.5 years old and that is waaaaay inappropriate from a language, learning, peer interaction level. Earl and I are in the latter camp so when we tell him we don’t watch baby shows, he says “the Wiggles are for babies.” “I don’t watch the Wiggles” and again with the hysterical laughter. Now all of this, I am sure you are thinking, is not a big deal. But somehow it is because he says these things 1000x per day and his day starts somewhere between 4 and 5 am. It sucks that at this time of the morning (I use the term “morning” loosely) screaming, “hi mom, I love you” . This alone can make you go insane. The juxtaposition between something as sweet as I love you from your kid, when so many kids are nonverbal, set against the fact that he is screaming this at 5 am is unreal.

Whose idea of a life is this? Geez!! And don’t tell me, “can’t he just….. stay in his room, read a book, watch tv, make something to eat?” Yes he can, right after he wakes us up. I always think he is going to start sleeping later but he never does. I thought teenagers were supposed to sleep until 11am every day and you had to drag them out of bed for school? The only ones dragging around here are Earl and me. I don’t know if it’s because I’m getting older or because it was a quiet summer but I am seriously exhausted all of the time now. So while we don’t have a lot of the bad behaviors we had before, we have new fun and exciting ones to deal with and they are challenging.

everythingisathing | September 27, 2013 | Tags: Autism, behavior, parenting, school, special needs, support | Categories: anxiety, Autism, behavioral concerns, camp, disabilities, family, Frustration, Humor, kids, mother, parenting, psychology, puberty, special needs, stereotypes, support, Uncategorized | URL: http://wp.me/p1Ax2u-r3

I dream about Annie’s Pizza

by Jane Kaufman

 

Bryan is now at a point where you can ask questions and get some real answers. I know that sounds nuts because he is 13 1/2 years old but that’s autism for you.  When he was little if you asked him a question, he would repeat the question, which is called echolalia. People told us not to be too worried about this because, like most things, there is good news and bad news about this. Bad news, he’s not answering the question, he’s just repeating it. Good news, he knows a response is required. At the point we were told this information any good news felt like the brass ring so we latched onto it. As time went on, not so brassy that ring, you know? Over time he stopped repeating the question, but didn’t give a real answer. SOOOOOO frustrating. It’s all in there, you can tell from how he behaves, what he does, and what he wants. But, the exchange, the conversation, it’s that thing that is always just beyond our reach. Having a conversation with your child is one of the greatest gifts, the gems they come up with are truly “priceless”. When Bryan does have a 2 or 3 sentence exchange I am often in my head afterward, smiling in my heart that progress has been made. Such a small thing, but enormous at the same time.  It’s funny about questions, some are easier to answer than others. He seems to be able to come up with an answer for the who or the where, but the why and how, well those are the really difficult ones. Anything that requires an inference or reasoning linked to language seems to get jumbled somewhere between what he knows and what he says. He often speaks in present tense even though he knows something already happened. As I have mentioned in the last blog, he is struggling with teenage and puberty issues. He is really saying inappropriate things and misbehaving.  What’s great about this is it’s typical behavior, what’s bad about it is typical teenage  behavior. He even is eating like a teenager. The boy absolutely loves to eat. He is an eating machine from the minute he wakes up until bed. He tries to sneak food when we are not looking and is always asking for more. He lost weight at camp and grew taller so he looks great. He will gain the weight back with ease because he seriously is nonstop. Like most autism “things” it’s ironic since so many kids with autism have food issues, either related to sensory issues or to digestive issues. Fortunately for him and us, he has neither. He is fairly open to trying new foods, and really likes a lot of varied things for a kid. At his age I ate hamburgers or hamburgers. So last night I was putting him to bed and I got under the covers with him like I do most nights. I don’t stay with him more than about 10 minutes, but I like to have this closure with him at the end of the day, just to make sure he feels connected to me. I said to him, “what are you going to dream about?”. Sometimes I ask real questions and sometimes I ask questions to see if he understands what I’m asking. This question was both of those things. At first he gave his usual answer for something he doesn’t want to answer which was “Shrek”. He often says things like “Shrek” or “Dora” or something childish when he doesn’t want to answer, doesn’t know the answer or doesn’t want to try. I do not accept such an answer. So I asked him again, what are you going to dream about? He said, “I dream about Annie’s Pizza”. Annie’s Pizza is our favorite local Pizza place and we order from there at least once a week. I laughed so hard, some combination of the craziness of this response, the candor and the Bryan-ness of it. Love it!! Tonight I asked him, “what are you going to dream about” and he said “food”. Sorry Annie’s!!

 

 

everythingisathing | September 5, 2013 | Tags: AutismcampMotherhoodpsychologysiblings | Categories: anxietyAutismchildrendisabilitiesfamilykidsloveparenthoodpsychologysiblingsspecial needsspeech therapysummer campsupportUncategorized |

The Brother of….

by Jane Kaufman

 

I love that righteous feeling of cranking the Beastie Boys in my car on the way to work. The lyrics are “brilliant”; a mix of pop culture, puns, and almost rhyming words that always make me laugh. Each time I listen to a song I catch a little more and realize just how clever those guys were. There voices are so distinct and I’m sure they are forever saddened by the passing of Adam Yauch at such a young age.
 
This has been a very weird summer.  I had a big birthday and that somehow forces a temperature gauge on where your life is and where you want it to go. Having the kids away at this time of reflection definitely skewed the landscape but now that they are back and starting school, I plan to look to them as my yardstick.
 
Jason has started 5th grade and will be turning 11 next month. He is on the Safety Patrol at school and is planning to run for Student Council President. He is also going to be a Parkland Sports Buddy for the first time this year. He will volunteer his time on Saturdays to pair up with a special needs kid, not his brother, to guide them in playing Flag Football. He had to be at least 10 to do this, so this is the first year he’s really been eligible to sign up. When I asked him if he wanted to be a buddy, he said “of course”. I’m very proud of that, he likes to be a helper so I’m confident he will embrace it well. I told him he needed to go early on Saturday for training. He said “training?, I’m like a buddy every day to Bryan”. Ha!!!

 

He has a great sense of confidence now as a result of camp and the relationships he formed there. Prior to camp departure, it seemed he really needed a break from Bryan and I think we were right about that. He needed to “spread his wings” a bit and develop some deeper friendships. One thing about Jason, he literally does not have one drop of self-consciousness about Bryan. Literally, none! A friend of his from camp that lives in NJ came down with his sister after camp to visit their grandfather. The grandfather became ill and the kids came and slept over night. The sister is Bryan’s age and Jason’s friend and bunk mate is his age. Bryan displayed his typical self, sometimes yelling, often impatient, and definitely perseverating. Bryan and the other kids ate dinner outside and he was clearly agitated. I do not know what the other kids thought, but Jason expressed nothing in terms of us removing Bryan from the situation or asking Bryan to quiet down. I was seriously impressed with this; I think I was more self-conscious on his behalf. He accepts his brother totally and completely; the true definition of unconditional love. The great part is when I talked to him about it he looked at me like I was nuts.

 

Bryan has started 7th grade. In true Bryan form, we went to open house last week. A woman was at a table with some PTA/SAC info and he walked up to her and said “Hi, Miss ____, it’s me Bryan, I’m back!”. He loves his environment at school and was literally thrilled to be going back. He woke up at 4am and was seriously ready to go, showered, ate breakfast, etc. by 6:15 and school doesn’t start until 9:30. He is tall and slim (as a result of camp) and although his nonstop perseveration (is that an oxymoron?) can be extremely frustrating, his eyes reveal a deeper understanding of what is going on around him. For this year the shift will be away from the basics and onto mature things. His OT contacted us to say we are going to finish up cursive writing practice and move on to more practical things; hygiene, cooking a meal in the microwave, making a sandwich, holding silverware better. For speech there will always be reading comprehension, inferences, speaking in complete sentences, and retelling a story. We focus on the improvements, not the results.

 

everythingisathing | August 23, 2013 | Tags: AutismcampMotherhoodpsychologysiblings | Categories: anxietyAutismchildrendisabilitiesfamilykidsloveparenthoodpsychologysiblingsspecial needsspeech therapysummer campsupportUncategorized | URL: http://wp.me/p1Ax2u-w5

Actions Speak Louder than Words

This is not a newsflash. You need to own it, your own bad behavior or at least my own bad behavior. There is really no good excuse for being short tempered with your kids. They don’t deserve it and no amount of telling them you are sorry or that you are stressed will work. Kids, like people, do not respond to what you say, they respond to what you do. I feel like a perpetual Nike ad, Just Do It!!! The tricky part really is how this applies to Bryan. For Jason, if I am stressed or angry or anxiety filled he will ask me, “Mom, what’s wrong?, why are you sad or why are you mad?”Sometimes the topics are too mature for him, but if I give him a general idea of what is happening, he will give me a hug or just be a little more sensitive. I can say to him, “hey J, I need a little more cooperation and patience from you right now” and he gets it and tries to comply. Bryan just says things like “you’re frustrated with me” or “everything will be ok”. When I hear Bryan say “everything will be ok” I want to barf. I know he is self-soothing and it means that the stress level has tipped the scales. You can tell your kids do as I say not as I do, but they will always do what you do, so behaving like a stressed out lunatic is some seriously poor modeling.

Spending time with the kids is huge. And I don’t mean existing in the same house. When I get home I hear Jason wanting me to do something with him and Bryan wanting me to do something else. It is always a struggle to find time to give each of them attention in the way they want it; but the message is key, Mommy, give me time, love, play with me!! The lesson, which for some reason I need to keep re-learning(is that a word?) is that you need to do something with each of them, even if it is only 15 minutes, doing what they want to do. Sounds so simple, but at times execution or taking actionafter a long day of work and a pile of stress is the toughest thing of all. Time to dig deep and remember that all of this behavior that you are exhibiting whether on purpose or not is all being tracked by these kids as if it were an app on your phone. The data is in storage and can be retrieved at any time.

This weekend they are leaving for sleepaway camp. I am always annoyed by parents that complain about packing a kids trunk. What can be better than putting your kids precious stuff in a big bag that will enable them to have an amazing summer? I love ordering labels, I love labeling things with their name and I love the idea that when they open their bags they will know that Mommy and Daddy made sure they have what they need. I have written my first letters to them today. I like them to have mail when they arrive. I am careful not to say I miss you and I love you too much, I don’t want to stir up homesickness. I will write again tomorrow. I tell them both that I will write every day and I always do. I guess that’s the point, actions speak louder than words…

 

everythingisathing | June 18, 2013 at 9:50 pm | Tags: Autismcampfamilylovepsychologyspecial needs | Categories: anxietyAutismchildrenparentingpsychologyspecial needsspeech therapy,summer campUncategorized | URL: http://wp.me/p1Ax2u-vX