AUTISM-related/I feel really sad and guilty about leaving for college (please read)

Parents Forum
1

<p>My little brother is 4 and has autism.</p>

<p>Here is the thing. I am literally the only one in my family in the loop about this. When I say in the loop, I mean I’m the only one who researches autism, has a pretty good understanding of autism, reads his IEPs, looks for local resources, etc. I don’t know how much any of you know about autism / special needs, but it pretty much requires caretakers to be fairly aware, proactive, and informed – especially in the early years, when intervention is so important. My dad and stepmom are just… oblivious. To everything. My brother was officially diagnosed last year (I suspected it long before that and they did nothing, but that’s another story), and I’ve never even heard them acknowledge that he has autism. They say horrible things to him like “You need to grow up” and “What kind of child are you?” and it just makes me want to scream. They are completely ignorant. Beyond that, they’re very impatient with him and yell at him when he misbehaves, and I’m the only one does neither of those things. They also have a newborn (horrible idea), and I’m worried that my brother will be even more neglected. </p>

<p>Essentially, I feel like my brother needs me. I want him to reach his full potential. I don’t know if he can do that with just my parents. They’re perfectly smart, capable people. I don’t know what their deal is.</p>

<p>I plan on going to a school all the way across the country in the fall, and I’ve been dreading it. I absolutely love the school, but I feel terrible about abandoning my brother. What should I do? Should I just go to school locally so I can help my brother? (Consideration: Our local school is a terrible fit for me.) The problem is that I hate my house and desperately need to get away (cliche, but true). Would it be selfish to buy a bunch of books on autism and leave them with a note that says “Read these if you care about Matt” before I leave? What would you do?</p>

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<p>My parents are immigrants, so all of our extended family are overseas. And even if they weren’t, my dad’s parents are dead and my stepmom’s parents aren’t the greatest people in the world.</p>

<p>Thank you for your input.</p>

3

<p>That’s a big burden you’re carrying, OP. It’s heartbreaking to think you’re the only one in the family with an insight into your little brother’s needs. Sounds like you’ve been a great big brother/sister to him & a help to your parents. </p>

<p>Are there other relatives/grandparents/close family friends you can talk to about this? If not, maybe speak to your brother’s pediatrician? Tell him/her you’re concerned that your parents may be too distracted with a newborn to recognize the 4 year old’s problems. Ask that the DOCTOR recommends reading materials about autism or recommends additional therapy. When your brother goes to kindergarten you could even speak to his teacher, explore available resources through the school/district. And when you’re away, keep in touch with him, make a special point to call him, maybe set up a Skype camera to talk to “in person”? On holiday breaks and summers try to spend as much time with him as you can, be as much a friend as a sibling. </p>

<p>But now is the time to focus on yourself a bit. Don’t give up your dream school, don’t give up your plans. Try to involve other adults in helping your brother while you pursue your education. If your brother still needs you later, you can help him much more as an educated, independent adult. College will help you get there, and give you so much more besides.</p>

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<p>** edit: </p>

<p>OP, I just saw your post about relatives being overseas. Is there a local immigrant organization or a church you can turn to? Someplace that can reach out to your parents and explain to them the options available to your brother?</p>

5

<p>What kind of educational and social services is your brother receiving now? Those people should be able to help you and your parents set up a program that will work without your personal constant intervention. Help your parents get to whatever appointments they need to get to this summer so that the teachers/social workers/occupational therapists/etc. on your little brother’s team can work with your parents on this issue.</p>

<p>Good luck!</p>

6

<p>You are a remarkable, wise young man. If I were your mom or friend I would be so very proud of you, honored to know you. We need more people like you in this world. </p>

<p>I agree that you may be able to find some community support in church, an immigrant group, and or social service organizations. Are you close to a teacher or counselor at school who could help you find support?</p>

<p>I think you should follow your heart. Reading between the lines in your posts, I think your heart is in staying and helping your brother. Yes, this is “your time” but your brother may be part of your time. Maybe you could stay in the dorms at the local college, which would allow you to spend time helping your brother a few days a week. I don’t think you would regret that at all. Many freshman go far away to what they thought was their dream school, and then they hate it, or get depressed, or do poorly, and end up regretting their choice, returning home to the local college and doing just great there. </p>

<p>Whatever you decide, may you have many blessings, success and prosperity. You are truly a shining star.</p>

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<p>I think you’ll be ok. Your brother is right about at school-age, and soon your parents will be getting tons of feedback from teachers about it. Whether or not that drives them to invest hours in the paperwork machine that is public mental-aid I have no idea… but let’s look on the upshot here: 4 years will not make a drastic difference. </p>

<p>In the future, you will be a far greater asset to your brother if you have a good earning potential, then you will if you make significantly less money right now. I don’t know how autistic he is (one of my friends was autistic and seems pretty normal to me!) My older brother is autistic, lord only knows I could use a fat sum of money to get some really good psychologists right now xD</p>

<p>As for your parents: I would expect your Dad might eventually come around, but it’s a tough say. Many people see autism in their relatives and think “why should I put up with this crap when I could put them in a home and live a perfectly normal life!” </p>

<p>You’ll definitely need to stay in contact. Push hard. You don’t need to live at home to play a largely influential role in that, but you will probably still suffer in terms of distraction and stress. That never really goes away :(</p>

<p>Some people do end up “letting go” when they realize that it’s getting in the way of their life. I’m sorry but I can’t give you much advice in that because I haven’t done so myself lol. I’m moving to a university this semester and my family is coming with me haha. </p>

<p>Hurray for studying in libraries!</p>

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<p>OP: I think you need to get away for the sake of your mental health. Perhaps there was another school not so far away, but you created this situation for some reason. Perhaps your inner self felt a school any closer would leave you vulnerable to being sucked in to negative family drama.</p>

<p>You know you love your brother. The above suggestions are wonderful places to start.</p>

<p>Is there money in the family to hire an aide? A knowledgeable person on site could work with your brother and educate your parents.</p>

<p>You’ll be coming home for holidays. The school year is not as long as you think. You will be able to remain involved with your brother and get your education.</p>

<p>I’m not sure you have much choice at this point. Try to avoid guilt. It really benefits no one, especially not your brother.</p>

<p>Good luck.</p>

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<p>I am so sorry, grad11, that you have been put into the position of parent/caregiver for your little brother. I work with kids with autism, and though they are great kids, they do need a lot of informed, patient caregiving. It is wonderful that you have done what you have, but please don’t give up your college due to this worry over your brother. You are still so young yourself, and have worked hard to be where you are. If your parents are from another country, they may be having a more difficult time understanding and dealing with this child due to their cultural constraints. But that doesn’t mean that they couldn’t or shouldn’t learn to deal with it.</p>

<p>Here are some ideas of what you can do:</p>

<ol>
<li><p>Does your brother go to a special pre-school? If he is on an IFSP, (or IEP) he probably does. Try to make an appointment with the case manager of his IFSP, which will usually be the head teacher, and talk to him/her about what you have said in this post, and what can be done. He/she may be able to connect your parents to some resources, parenting training, etc. If someone comes into the home, like a speech therapist or occupational therapist, try to talk to them about this. They will usually know the resources in your area.</p></li>
<li><p>Does your brother have a case manager from the county or state Disabled Services Department? If he is signed up, and has a case manager, you can contact that person, and follow the advice above. They would have good resources for your parents. You may also want to tell this person your concerns, not to rat on your parents, but just to reinforce the idea that they need some education and training. They may also need some respite care when you are gone. If your brother does not have a case manager, I would try to find the information to be able to get qualified for one, and have your parents do this. You can find this information out by contacting your county information line, and asking for this department. In our area it is called 'Department of Senior and Disabled Services", but many areas have different names. You may be able to entice your parents to register with this department with the carrot that many parents of children with disabilities receive SSI checks due to the disability. </p></li>
<li><p>There is usually a nonprofit organization in most areas that specialize in children with autism. They have special playgroups, support groups, classes, etc. We have one in our very large town, so maybe there is something in your area? PM me your area, and I will try to help you look. They may also have ideas on how to get your parents on board.</p></li>
<li><p>Make a social story for your brother that you can read this summer, to make sure he understands what is going to happen in the fall. You may have heard about these from his preschool, or they can help you make one. For example, Have it say something about how you and he are brother and sister (pic together), you like to do things together (pic of this), and you both go to school (pic of you studying, him at school). You now have to go to another school (pic of college), and it is so far away you have to take an airplane (pic). You have to live at this school far away, and won’t be able to see him as much. But this does not change how much you love him, (pic of hugging) and how much you miss him. You will see him at Christmas, and will visit with him xxx days (every day, every 2 days) on the computer. His preschool speech therapist or autism consultant, if he has one, may be able to help with this, also.</p></li>
<li><p>Show him the website of your college, and explain to him where you are going, and why. Tell him about what you are going to study, and why, show him examples of this on the computer, also. Many kids with autism love computers, and are very good with them, so he may appreciate this.</p></li>
<li><p>Plan on having Skype at home and at college, so you can communicate with him often. He will probably love this.</p></li>
<li><p>If you will be 18 when you go to college, see if you can have a parental exchange of information signed between you, your parents, and doctor, therapists, etc., so if you have to, you can still try to help figure some things out when you are away. You get one form from the doctor or the preschool, etc., and put everyone on there who you want to exchange information with, including you, and have your parents sign it, and send or fax a copy to all included on the form.</p></li>
</ol>

<p>This is what I can come up with at the top of my head; will bring it up to my sped team and see if anyone else has any other ideas! You are an amazing person!</p>

10

<p>Is it possible that your parents will start doing more, if you actually go away?</p>

<p>I would go for the fall semester, at least, and see how you feel, and how things go for your brother. That way, you will not have regrets. If you do end up giving up the school to be nearer your brother, you will have a more realistic idea of what you are giving up, and it may be less traumatic to lose it once you know what the life is actually like, versus a “dream” you did not try.</p>

<p>Or, alternatively, you will love the school, your parents and others will learn to fill the gap, and in 4 years you will be able to make another choice about whether to be near your brother or not.</p>

<p>This issue is going to continue in your life for a long time. It is good to start finding a balance for yourself, which can neither mean leaving your brother behind entirely (for a person like you) nor sacrificing everything for him. You have heartfelt understanding here.</p>

<p>Your post was one of the most poignant I have ever read. Either way you go will be painful. Maybe having a counselor to talk with yourself right now would help, even more so if the counselor understands autism.</p>

<p>Take good care.</p>

<p>p.s. skype is a great idea and many people are using it for purposes like this; you could see and speak with him every day…</p>

11

<p>Go to local college if you care so much. Apparently, you love little boy more than your parents. You will miss him a lot. Your parents will not change in reagrd to your little brother. They have newborn to take care of and even under normal circumstances it is very hard on the older sibling of 4 years of age to adjust. It takes very caring and loving parents to make adjustment for the older one easier, to make him feel comfortable around baby.
IMO, both of you, your 4 years old brother and you will suffer if you go away. I have seen autistic kids growing to become very loving, social and capable if they are surrounded with love, care and understanding. They are actually enhancing lives of people around them. They are capapble of such unconditional love that not many of us can feel.
I am sorry to make you feel worse. But you are asking for honest opinion. Here is mine.</p>

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<p>At what age will intervention not be as important? Are you really qualified to provide that intervention?</p>

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<p>I agree totally with compmom’s advice. I also think it is likely that your parents will step up more–or get more help–once you are gone.</p>

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<p>You brother’s school teachers, psychologist, counselor, social worker and nurse will prove to be valuable resources to assure that he gets the help he needs. There will be many people poised to help him once he is in the school system. If he is 4, he probably will be in kindergarden either this fall or next fall. Ideally, the relevant school district staff should be aware of his challanges before he enters the system. You can certainly make sure that that happens.</p>

<p>How does he have an IEP if he isn’t in school yet?</p>

<p>Re: your parents… it is possible that they are guilty, embarrased or in denial about your brother’s autism. Maybe they need some counseling with a professional. Parents I know who have children with issues have benefitted enormously from parent support groups. Would they consider that?</p>

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<p>I am sorry to hear your story…One way to help is to study health-related science and become a doctor one day.</p>

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<p>One way to help is to study health-related science and become a doctor one day. </p>

<p>or special education, or music/expressive arts therapy…</p>

<p>Another option for school might be to go to CC for two years, see how things go and then move further away, when you feel like more support is in place for your brother.</p>

<p>Best wishes to you and your family.</p>

17

<p>"One way to help is to study health-related science and become a doctor one day. "
-which will require about 12 years…with NO time for littel brother at all, zero…my D. is starting Med. School in few weeks, yes, she is done with 4 out of 12+, the easiest 4.</p>

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<p>My daughter is teaching music to a child with autism at the same age as your brother. The parents are both immigrants. You should sit down and explain to your parents that earlier intervention is most helpful for your brother in the long run. I’m sure they will understand. Do not think just because they are immigrants that they don’t recognize this problem, if they don’t please at least educate them. Call home as often as you can and keep inquiring about your brother.</p>

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<p>OP, you are a wonderful person and you should be really proud of yourself. You are what we call “parentified”, though - taking on the role of the parent when you are not the parent! Even though you love your brother and your family, this should not be your burden right now when you have your own developing to do! You should also know that when one person in a system over-functions, the other under-functions. Your parents may very well step up when you go to college.
I totally agree with the posters who point out that you can get some services in place before you leave. Call your brother’s health care provider and ask if he is eligible for wrap-around services. These are therapeutic support staff who can come into your home and help your parents learn how to communicate with him and how to shape his behavior. If he is eligible, request that the health care provider order such services. Find a support group and call them and ask them to call your parents and invite them to a meeting or social function. They may feel a lot of comfort in knowing other parents with children who also have special needs.
Please do not be too harsh on your parents for having another baby. This may actually help them cope. Please understand that they are mourning the child that your brother is not - the typical child that they tought that he would be. They really could benefit from some counseling, but they may not be willing to go. They may be more willing to go to a social function of a group and get support that way; eventually they may learn that other people benefit from counseling. As a matter of fact, you might find a group of siblings of autistic children at college. If it does not exist, you could start it!
Skype and writing the book: great ideas!
Keep your compassion - you are very special!</p>

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<p>

Well said!^
Much good advice in this thread. I heartily agree with the suggestions in Post#9 by wrldtravler, because my daughter-in-law works in-home with preschoolers needing autism services in immigrant neighborhoods. I recognized the “social story” and many other things she does to reach whole families.</p>

<p>She works mostly with urban, immigrant parents. For her (unlingual), the language barrier is among her largest challenges, and that of her agency.</p>

<p>Can you offer to volunteer extra time, this summer, by appointment, to all the current intervenors who come to your home, or who interact with the child? You might put in many hours this summer as a translator so the experts can teach your parents across the language barrier. </p>

<p>I’m not sure why they are so resistant. I’m going to link a national autism website for you [Autism</a> Speaks, Home Page](<a href=“http://www.autismspeaks.org/]Autism”>http://www.autismspeaks.org/) although I’m guessing you already know such resources.</p>

<p>I’ll also add the word “autism” to your thread title to catch the eye of many knowledgable experts who might read this forum.</p>

<p>I respectfully disagree with a few posters here that you should change college plans to stay closer to home. </p>

<p>You can create a BI-Lingual, personalized “social story” on your computer with simple sentences or phrases. Illustrate with clip-art, google-images, a family photo of you, or just paste in magazine pictures of tables, cellphone, computer screen, airplane, etc. if you can’t draw well. If you put your parents’ language atop the English, line by line, they’ll more likely read it with him after you’re gone. In my mind I hear the dialogue like this, “I can talk to (your name) by phone.” (turn page). I can talk to (your name) on computer (turn page). I can ask Mom or Dad to help me say hello to (your name)." but you know best what’s needed, I’m sure.</p>

<p>It can be read and reread by your parents all next year, to help your brother come to terms with where you are and how you can still communicate. (While you’re at it, write one for yourself :)) Include some quick reference to the new baby and the parents, but mostly focus on you and your brother.</p>