The Challenge of Meeting the High School Rites of Passage When Your Child is Autistic

As if it isn't hard enough for an a child who has autism to fit in with high school it can become doubly challenging to meet the normal high school rites of passage just because of the way the system is set up or run. By the time many kids reach high school the system has relaxed a bit and you'll find that many schools no longer send home those newsletters informing parents of the school's activities and happenings. If you're lucky your school will have a well developed and updated website listing what's going on and deadlines. Unfortunately some schools still lag behind in that area. When the kids reach high school age there is a lot that happens there by word of mouth. Daily announcements and flyers put up around the school keep the
kids informed.

I often found that my son had no idea of many of the big things that were happening at school because his attention was somewhere else when the announcements were going off and he didn't look for or read flyers. As a parent this is incredibly frustrating. I could remind him every single day and even jump up and down and insist but I can't be there at school every day to make sure these things are getting noticed. In hindsight I wonder why it never came up at the IEP meetings. We could have had the speech therapist or case workers question him daily on the announcements and content of posted flyers; that way he would have gotten into the routine of listening and checking them.

I would encourage other parents to do something like this or ask your school, if there is not any newsletter or website, to send home a daily update on school activities. The minutes read over the loudspeaker can be copied and the flyers also can be copied and sent home.

It's really not so much a failure in communication at this stage as a challenge to keep up with the development level of the other kids. When they enter High School they are given more responsibility to pay attention and get things done on their own. The schools relax and expect kids to be listening to announcements, reading flyers and looking for and seeking out their own activities that they want to participate in. With an autistic teen these simple things can become a challenge and intermediatory measures may have to be taken so our kids can enjoy and take part in school activities to their fullest ability and not let deadlines slip by unnoticed.

Preventing Burnout When You're Parenting an Autistic Child

You've found out you have an autistic child and now in addition to being a Mom, cook, chauffeur, house keeper, administrator, referee and scheduler you've added speech therapist, occupational therapist, advocate and a whole lot more; How do you do all of this with out burning out?

I decided on this day -- Mother's Day -- it would be a great time to delve into this subject.

Here is a list of some things you can do:

Take time for your self
If it's a day or just 10 minutes, schedule time away from everything. Do this without guilt. Write down on a peace of paper that this is my time and I will not be burdened by any form of guilt, schedules or things not done.

Enjoy something you love
When you are taking some of YOUR time try spending some of it enjoying something you love, that makes you happy, calm or at peace. This could be as simple as watching a favorite TV show, reading a book or enjoying a hobby. Immerse yourself in whatever it is and enjoy it fully. Never let any form of guilt attach it self to these activities. Always remember this is your time.

Connect with parents that share things in common
Parenting when it's weighted done by dealing with autism, can not only be overwhelming but it can be time consuming and leave you at home alone a lot. There are groups such as Parent to Parent that connect parents with a child with disabilities to other parents or with support. There may also be a variety of play groups or parenting groups in your local area. If you don't know of any try calling your local child development or early intervention center or ask a teacher, therapist or school. Autism play groups or support groups often have activities or knowledgeable baby sitters that work or play with the kids while the parents get together and talk, so you're not only doing something for yourself you are doing it for your child also. Ask if other siblings may attend too; when I went to some of these groups I had a younger non-autistic daughter and she was welcomed into the play group also.

Connect with people that share hobbies or interests in common
This is different from the above. Connect with people that share your hobbies or interests. You may be saying to yourself, "but I don't have time!" The Internet has made it very easy for people that share interests to connect. There are message boards for book clubs, most of the TV shows and all kinds of hobbies. Try looking some up. Also don't forget to actually physically get together with other people that share your interests. If you schedule some of these, even if it's just once a month, you'll find that it's really not that time consuming and it's fun. There are hiking , Horseback riding, gardening, book clubs and many more. Remember to do this for yourself and do it without any guilt, impending schedules or other burdens sabotaging it.

Get Help
If you are overwhelmed and can't seem to dig a way out get help before you burn out. Sometimes a single visit to a therapist will not only make you feel better but will start getting you connected with the help you need. Teachers and therapists also many times can point you in the right directions. There are also churches and other organizations that will lend spiritual help and guidance. I will add lastly to ask a supportive friend or family member for help. I know from experience that with autism family relationships and friendships can be complicated at times so make sure the person you ask is truly supportive to you.

Mother's Helpers
There are so many young adults out there that will gladly help out for a small fee. They can play with your kids while you get things done or just help you out with the household chores. Even if it's just a couple times a week, it might give you so much relief. I've found that many teens are more open and excepting than some adults I know.

Babysitters
Here in NH we have a respite center that connects parents with autistic children to knowledgeable and trained in home care for their child. There is also a fund for parents that can't afford it. If you can't find a babysitter try looking up one of these respite centers in your area. Here is a link to a National Respite Network.

Organizers
Yes the classic organizer may be a life saver, but there are more ways to organize than that which can help. Try having a notepad on the counter, in your purse on the fridge. When thoughts come to you that you don't have time for write them down. At the end of the day go through your notes and write the important ones on your to do list in your organizer or wherever you may keep it. Bookmarks on the computer are also a very handy tool. When you look something up you may not have time for it right now or you may find it useful at another time. When you book mark something though don't just hit bookmark, create folders and organize the links into the proper folders so you won't be searching through hundreds of bookmarks later.

Beware of unsupportive relatives or friends
Having unsupportive relatives of friends can be difficult and hard on you even when it's not complicated by having a child with autism. When you have an autistic child it can be heartbreaking. Just remember if it happens to you you're not alone; you're not the first one this has happened to. It would be a great subject to bring up at a support group. You'll be amazed at the ugly and sad stories you will hear. It will also help to get some advise on how to deal with it. What ever happens don't take it personally. Dealing with disabled people can be a tough subject for many to broach, some people just need more time or clarification and exposure before they can adjust. In the mean time always fall back and rely on positive support systems.

There are many other things that I could mention and I will most likely write on them at another time. The last and most important thing I will mention is:


Beware of Guilt
It's not something that you may think openly of but guilt can be ever present in your life and causing a heavy weight load without you even realizing it.

Guilt easily becomes a heavy burden to us if we're not careful. Guilt is not something you may think of unless you're a therapist or seeing a therapist, but it can creep into your life and take over the way you do or deal with things. You may find that you are not taking time for yourself because ____ <---- insert guilt reason here. Try asking yourself honestly if you feel guilty for your child's diagnosis or not doing enough for him. Just acknowledging that guilt might help you. If you can't overcome guilt then try getting help (see above). Do you know something else that helps you or you think may help? Leave a comment below.

Choosing a College for the Autistic Young Adult; How Much do College Activities Matter?

It's not usually the first thing that comes to mind when your looking for a college. Activities for most college students are a bonus. College kids seek out at their schools; fun, pleasure activities and the chance to participate in something on track with their studies or that they enjoy. My son and I have been visiting some local colleges for him for next year. After visiting the last college I began to wonder how much the school activities also matter for him.

For the autistic young adult, who may not going looking for fun and social things to do, it becomes a question if the activities at the college are set up in a way that an autistic person can not only find them but will want to participate in them.

For example the last college we went to had an activity center that was open to all students. In it there were games like pool and ping pong tables, video games, vending machines and much more. They also have a full cafeteria, coffee lounge and a gym. The gym could be used by any student not just athletes. There were the usual clubs and scheduled activities too.

Clubs for my son, like many autistic kids, have always been a challenge in the past because many require a social get together and a lot of interaction between the kids. He is successfully participating in two clubs now but it was difficult to get him to want to do this.

So it makes me wonder in a college where the largest amount of activities for students are clubs, how much will he join and get into them. In the handbook of the college he is visiting next week they only mention clubs and activities, not activity centers, gyms and hang out places (They may have more they are not citing but I wonder why they wouldn't advertise it in their brochure).

The first college I mentioned above has places that he can go and participate with out the pressure of having to join the group. He will at the same time be hanging out with kids his own age and have a chance to meet them outside of class.

Both of these colleges seem to have the classes that my son would want but when you look outside the academic requirements I think the first college would be a better place for him to go.

From our experience I've concluded that when choosing a college the type and structure of activities at a college should also be an important concern for a young adult with autism. We -- parents and autistic teens -- have to remember and remind ourselves that life, when it's complicated by autism, is not all about the school work accomplished. We have too seek out the appropriate activities, even more than the average teen would do, that will inspire and encourage the autistic teen to keep being social and getting out of their shell.

Autism and the Gluten Free Diet for Teens and Adults

I've been reading a lot about the gluten free diet and diets for autistic kids lately but I have yet to come across anything written on it's use with teens and adults with Autism. There is so much focus on the younger kids and intervention that it almost seems that we sometimes forget that these kids become young adults and eventually grow up.

It's just as important for young adults and the adult autistic person to get treatment and intervention as the kids. I would like to hear from some of the older autistic people or their parents how well the new diet(s) -- and in particular the gluten free diet, is working with them. I'm sure a lot of parents of autistic teens and adults are wondering that right now. When our kids were diagnosed we didn't have this information and option for treatments. Should we start now? Does this only help the younger kids?

I'm still researching on this subject, and in the future I will write on what I find. For now if anyone has any information on this subject please do post in the comment section below.

In Jenny McCarthy's books she talks about finding a DR. DAN practitioner. DAN is a project from the Autism Research Institute which is Defeat Autism Now! It is dedicated to educating parents and clinicians regarding biomedically-based research, appropriate testing and safe and effective interventions for autism.These practitioners can test for allergies, sensitivities and diet issues and much more. The list of practitioners can be found here.

Autism, Gluten Free Diets, Diet and Food Sensitivies

I have been reading up with fascination on the Gluten Free and Casein Free diets that some parents are using with their Autistic kids. From what I understand this is also being combined with other treatments and therapies and it is having a fantastic amount of success for some. When my son was little we did not have this information available to us but when I look back in retrospect though I can see some amazing connections.

When my son was a happy healthy 6 month old I was having some difficulty nursing him and had to put him on a bottle. He had a severe reaction to the formula; diarrhea, gas and painful cramps. I tried formula after formula and even asked the doctor. Finally as a last resort a found a soy based formula. It worked like a magic charm. He was suddenly ok. When he was around 18 months I took him off the bottle and started giving him milk in a sippy cup. I don't know why I gave him milk, I don't think it occurred to me not to. I was reading all the baby books about weaning your baby off the bottle and I don't recall any mentioning not giving milk. The ones I remember all boosted milk, even heavily promoted it as necessary for your child. With so many knowledgeable authoritative figures agreeing on a subject why would any mom think to do any thing different?

It was around that time that we noticed he seemed to be acting like he was deaf and not very responsive. He was diagnosed with Autism shortly before he was two.


When my kids were little and we were going through some tough times I was ever so grateful for all the help and food we got from WIC. If your not familiar with WIC it stands for Woman, Infants and Children. WIC provides Federal grants to States for supplemental foods, health care referrals, and nutrition education for low-income pregnant, breastfeeding, and non-breastfeeding postpartum women, and to infants and children up to age five.

Even when we had no money for food thanks to WIC we had an abundant supply of cereal, eggs, cheese, milk, peanut butter, dried beans or peas (they later added tuna and carrots but we didn't have that option). My kids loved it. I can remember having so much of it that the fridge and cabinets were over stocked at times. That's a lot of gluten and casein they were eating. When my youngest was five and my son was seven we stopped getting it. We no longer had an over supply of milk products and cereals.

Personally I don't like milk very much so I really didn't push it on my kids after this. Sometimes I wondered if I was a bad Mom for not making my kids sit at the table and drink a whole glass of milk with their meal. I guess when you don't like something it changes your opinion of it and it's need.

My son was saying one or two word sentences when he was 5. By the time he was 8 he was talking in sentences.

Some of this new information that has come out on autism and Gluten and Casein talks about diet, and in particular the B vitamin, being very important for autistic kids. When my kids were little my sister was going through college studying to be a nutritionist. At times we would talk on end about vitamins and also autism. She liked to look up all the new information out there on autism and tell me about it. One day she told me about a new vitamin being used for autistic kids. I can't remember what it was now but we had to order it through a company that makes drugs because it wasn't being sold. I gave it to him for about a year and when we ran out I gave him kids vitamins all the time.

Now when I look back on it all I can see those very possible unlucky connections we had with gluten and casein and also those lucky things like running out of WIC, not pushing milk because I didn't like and My sister introducing us to the vitamins.

I can't say for sure if these were causes or cures. We weren't deliberately playing with his diet. I can say that my son is going to college this fall and has very few Autistic traits left. Most of his difficulties are with staying social and persevering on some things, and we all can do some of these things sometimes!

Honestly, I don't know why there are so many nay-sayers against some of these new diets and treatments for Autism. There have been scientific studies done on how a good diet or poor diet effects the brain. There have been studies done on how too much sugar affects kids brains. Why couldn't it be possible for autistic kids to be effected by something in their diet?

When my son was little we looked for help and hope in any place we could get it. These diets and treatments are giving a lot of hope.

You can find some great books on the subject at the Autism Research Site.

Giving up Your Dreams for Your Child when they are Diagnosed with Autism

It's one of the hardest things you'll ever hear. "Your son (or daughter) has Autism." In a flash you think of all the dreams you had for him growing up, playing baseball with his friends, going to college and succeeding in life. The doctor has just told you that your child may never talk, communicate or act like a normal child and in that moment it feels like all your dreams have been crashed against a wall and you've just lost your child.

I thought of those things when the doctor told me my son was autistic. I wanted to cry but then as we walked away from the doctor's office I looked down at my son and his small hand in mine. He was the same little boy that I knew yesterday. I loved him just as much.

I never gave up on those dreams but I had to push them aside and concentrate on the present. Focusing on those dreams too much at the time was too painful and wouldn't help very much anyway. I never wanted to lose those dreams for him and at the back of everything we did they were always there. There was always hope.

My son just applied for college and he is one of the very few in my family to do so. He has already achieved so much in his lifetime and his future is very bright. He's not perfect and he has his own issues but are any of us perfect and without issues?

In retrospect from everything we've been through I would say it's important not to give up your dreams for your child. If you have to, just push them aside for a while, focus on the present and don't focus on your dreams as much. Love them as you normally would. It's not the end of the world, there is so much more help and hope today then there was even ten years ago.

Our dreams for our children change as they grow anyway and at some point we will have to let them realize their own dreams and not ours.

Here's a nice video on Autism and Aspirations

Graduating from High School - wouldn't it be nice if we could graduate from Autism too

I just returned from one of the last meetings at my son's High School. He'll be graduating in June having made the honors or high honors every term since he started. Before the meeting I thought about pulling out the notebook and going through all the notes and questions I might have as I usually did, year after year at these meetings. Then I got a little fed up and said to myself - Why bother?

Many of the things I pointed out and asked for I repeated year after year and was always met with optimism and helpful suggestions ---- and no follow through. I don't know why the school(s) did not seem to understand that an autistic boy might need the actual steps towards making a friend broken down for him and rehearsed and practiced with goals such as approaching a possible friend to initiate a get together.

There were many other goals, amazingly met (as reported by the teachers) and achieved then repeated every year.

I can now say at the end of this high school experience that I am thoroughly disgusted with the school system for not understanding and working diligently with disabled kids that have a social disability. Worse than them not being able to help is the blatant lies and smiles and encouragement they give at every meeting. Did they ever intend to follow through or do they just lie on purpose?

Good luck too all the parents that have autistic kids in high school. I really feel for you. It sucks when our kids are so smart that they meet the educational requirements and the schools think they are doing great. My son could practically reiterate a text book of facts from his head when he was seven.

We need a separation of educational requirements with life skill requirements and they need to be held accountable to work on these with the child. At least if they had separate real goals for life skills their importance would not be lost when the school has met all their educational requirements and are patting themselves on the back.

I know there were a lot of great teachers my son had through the years and it is awesome that he has made it so far especially since they once told me that he may never talk or act like a normal kid. Like any Mom though I want the best for my son, and I know the school system is not doing their best. They are hiding behind red tape and budgets and not honestly do what needs to be done.