Can You Advise a Mom New to Autism? Your Thoughts Requested!
I've recently discovered that my 20 month old daughter is autistic. iI's been a real life nightmare...because she doesn't do normal things at all....When someone comes over, let's say uncle, aunt, or grandma, she doesn't acknowledge them or look at them or say hi or anything. She's in this whole nother world, zoned out. playing repetitiously with her toys, as if it were choreographed each time she engaged herself in a new project.Erin, you are not alone! And while it may feel overwhelming right now, you ARE doing a wonderful job. I'm sharing some of my thoughts below, but do check back here to see what some of the other parents out there have to suggest. You'll find a terrific community of caring folks here.Autistic children don't know the meaning of purposeful play. My child swipes away a doll if I try to put it in her face for a kiss. She collects toys rather than play with them. She prefers to play alone, avoiding any contact with other children.
My daughter's name is Cameron, and i can't even write enough about her to explain what my husband and I are going through. ... I am doing early intervention at my house with specialists twice a week for Cameron. She is my first child and I cry about once a week because of this, and that's alot, considering there are so many other things to stress about these days.
Could it really be as easy as taking out the gluten in her diet? I'll try anything. I really don't know why i was chosen to raise an autistic child. I'm really doing my best and providing her the treatment possible. I don't know what else to do. Help.
- First, I'd suggest you find (as you've started to do) other parents who are dealing with the same things you are. Many have been there and done that, and will have suggestions for everything from managing family to starting toilet training! They'll also be willing to listen as you work through some of your feelings.
- Second, I'd recommend that you buy a book called "Engaging Autism" by Stanley I. Greenspan, M.D. and Serena Wieder, Ph.D. It will give you some very specific ideas about how to play with your daughter in order to build communication, engagement and play skills. The therapy is called Floortime, and I recommend it because it's effective (not on its own, but as one part of your treatment program), it's fun, it's free, and it's a great way to rebuild your connection with your daughter.
- You should know that removing gluten from your daughter's diet will not cure her of autism - nor did it cure Jenny McCarthy's son. That said, special diets do appear to be helpful for many children with autism - and, assuming that you're careful about your daughter's nutrition, it may well be worth trying. Most people remove both gluten (wheat) and cassein (dairy), one at a time.
- You might want to consider preschool programs for your daughter as she gets a little older. The right school may be able to help her build play skills, social skills, speech skills and more.
Comments
Hi! I think that it is good advice to find a support group for parents. If you can’t find one locally, there are many message boards on the internet. You could probably just search for “autism message board,” and I bet you would find some.
I would also suggest keeping a positive attitude (I know this will take time). As an adult who is on the spectrum (Asperger’s Syndrome), I think it’s so important for parents and teachers to have positive expectations for their kids’ futures. Lisa (the autism guide) has written some good articles on the site about teriffic traits of autistic people and how autistic traits can be good for certain jobs. I’m not sure of the links to these articles. Maybe someone can post them? They’re very good.
Keep up the early intervention if you think it is helping (speech therapy is often very helpful), and certainly look into public school preschool programs when your child is old enough.
I wish you the best!
AspieMama ~ http://aspiemama.blogspot.com/
I found a link to one of the articles: Top 10 Terrific Traits of Autistic People
http://autism.about.com/od/inspirationideas/tp/besttraits.htm
AspieMama ~ http://aspiemama.blogspot.com/
I have a 20 year old son with high functioning autism. When he was 3 years old, and non-verbal we visited Stanley Greenspan, among other doctors. I agree that Floortime, in an of itself is not enough of an impact. Behavioral therapy is a must, in my opinion, supported by our experience. I wrote 2 blogs regarding our interventions where parents might glean some ideas The first is about intervention and flexiblity. http://www.revolutionhealth.com/blogs/resilientmom/flexibility-and-autis-4691
The following piece is about other interventions we tried.
http://www.revolutionhealth.com/blogs/resilientmom/parent-guilt-about-mi-5915
Erin – Your Cameron sounds a lot like my Kiera. In our case, removal of gluten and casein and soy made a significant difference in the first 24 hours (and the re-introduction made such a severe difference we vowed to never do THAT again!). The addition of digestive enzymes and probiotics changed
even more – she could finally SLEEP (for us a really big thing). She had not slept for more than an hour (and getting her to sleep could take 3 hours of her banging her head into my hips, pullingf the hair out of my head, and needing to be laid upon) at a time in her first 2 1/2 years (except as a tiny newborn). Also, her sensory issues decreased significantly, allowing us to be able to shop at stores with PA systems and even attend sporting events and eat in busy restaurants. Her drooling came under control with zinc and tantrums improved with magnesium.
It has been six years since we gave the diet a try. And we have tried many other interventions. Most have helped my daughter, some not so much, only a few seemed to be detrimental to her improvement.
We still are on the diet (me and her siblings, too). We dropped PT, OT, Speech, and public school Special Education. We increased her Applied Behavior Analysis program using Verbal Behavior and Positive Behavioral Supports and moved her to a Montessori school where the teachers and assistants welcomed her therapists and embraced the techniques that have allowed her to really catch-up to her age-peers. She now loves horseback riding (a therapeutic program she started at public school).
The diet is very hard, at first. Once you find a list of items you can rely on, it gets easier.
I run a small (VERY small) 1 woman non-profit. My mission is to help as many families as I can improve the quality of life of their child with autism.
I have done literally thousands of hours of research into many aspects of the disability and have many opinions to share. I tell the families who come to me to take what they hear and decide what sounds like it might help their child; then throw the rest away. I know some excellent pediatricians, protocols, recipes, and even stress relievers.
There are many parents like me out there. My theory is that if I help a family and they see improvement in their quality of life, then they are obligated to help a family (”pay it forward”), too. Nobody else is out there trying to help our children overcome this hurdle. Not the Government, not the Schools, not private Insurance. It is up to us to heal our community.
I run Just for the Cause, Inc. (www.justforthecause.com). My fundraising has been significantly curtailed by some overwhelming family circumstances, but I still support families by phone and help them to find ideas to help them advocate for their children at IEPs and in the classroom. There is no cost other than the promise to “pay it forward,” if I help them help their child. If nothing else, I can listen and empathize (something many “typical” friends cannot possibly grasp.
Also, every state has “Rescue Angels.” GenerationRescue.org has a listing. Although they talk about heavy metals, most of these “Angels” are knowledgable about MUCH more.
Erin, don’t give up hope for Cameron. You are embarqing on a journey that will, in turns, enlighten you and exhaust you. Along the way, you will re-discover your hopes and dreams and realize Cameron’s potential.
So many of us struggle, every day, trying to KNOW the RIGHT thing to do. I am coming to believe that much of what we know is revealed to us, if we listen closely.
I send peace and joy to all my fellow families with autism. May each day bring you a new discovery, deeper insight, and greater joy.
It’s okay to grieve, but don’t get too bogged down with it
Educate! Educate yourself, your relatives, and anyone who is around your child.
Look at both sides of the story. The first thing I found was an overwhelming assortment of stories detailing the horrors of autism. There are just as many positive stories out there. Look for them and focus on the positive.
Read about and listen to persons on the autism spectrum. They know more about what it’s like to be autistic than we do. There are numerous websites and forums for autistic individuals. I’ve gotten lots of great advice from them.
Learn to recognize a meltdown. The sooner you are able to recognize a meltdown, the sooner you can figure out what triggers it and you can work on removing that trigger.
My husband says the number one thing is to learn how to pick your battles. It saves a lot of frustration for everyone. For my son, frustration is the number one trigger for meltdowns.
Learn about different therapies. Know what is being done to your child! Keep in mind that a certain therapy may not work for your child. That is okay, just try something new. Also, don’t make everything therapeutic. If you turn play into work, it will remove the joy from it.
Try not to overwhelm you child (and your family, and yourself) with therapies. While therapy may be important, keep in mind that juggling numerous therapy schedules and home life is tedious at best. It cannot rule your life.
When your child is of school age, work with your school district special needs representative and classroom teachers. A good relationship will go a long way.
There is a ton of assistance out there. Each state has an Autism Society (I think) and you can usually get an autism advocate to assist you with decision making. Also, find out if you have a Disabilities and Special Needs Board. You can get a representative for your child and yourself. Our representative has been a lifesaver when we are overwhelmed with paperwork or when we have needed an advocate.
Just like when you were pregnant, you will be given lots of advice from many different sources. You don’t have to take all the advice. Consider it (or not) and follow what you feel is right.
It’s okay to make mistakes. If you make one, learn from it and then let it go.
Respect your child’s boundaries. For example, if your child hates the way fleece feels, don’t force it on them. Put it aside and try again later. Same goes for food and play.
Make sure your child knows that you love him or her.
Don’t be embarrased if your child plays differently than the children around her. It is how it is. If a curious parent or child asks, tell them. Austism is nothing to be embarrased about.
Finally, there is a wonderful story that I read. It is called “Welcome to Holland” and it was written by Emily Perl Kingsley. It sums things up quite nicely and it was a turning point for me after my son’s diagnosis.
One of the best books I read when I was going through the same tough times that you are right now is called Overcoming Autism by Lynn Koegel and Claire Lazebnik. It is such a practical book and always leaves me feeling encouraged. You don’t have to read it all in one sitting. You can pick out the chapter that applies to your current challenge and take it from there. I can’t tell you how much this book helped me in those first dark days…(You can find it on Amazon or at your local bookstore…)
Also, please visit my blog on Parents.com. http://parents.com/autismville
The mission of the blog is to help other parents feel less alone on the journey. It’s an extremely supportive, positive site.
(Lisa Jo’s blog is great too.
)
Hi Erin,
First of all Cameron is not gonna stay the same forever, regardless of what interventions you choose to do to help her learn how to communicate better. She’ll do more “typical kid stuff” eventually, 20 months is a very young age to determine how much she can progress. Many kids seem severely autistic at her age, and then become very high functioning when they grow older. So please keep a more positive attitude and have some faith on her. And remember, it takes time. Be patient.
Now, if Cameron doesn’t respond as expected to treatments, which is always a possibility, you have to learn how to appreciate and love her in her difference, quirkiness… It’s like learning a different language, a different culture. You have to respect her as a different human being, and not see everything she does in a negative light.
Also, do not underestimate what she is capable of doing or understanding. There are several cases of severely autistic people who are completely non-verbal, and once they were able to express their feelings through writing/typing, they blew everyone away with their intelligence.
Just be patient and gear up for this long journey. You may be surprised about the good things that will come your way.
And beware of the “easy” solutions to “cure” autism. You’re on this for the long haul. Even if she turns out to be extremely high functioning, undistinguisable from peers, responding to diets or ABA or whatever, she will always be autistic, and will always have her unique ways and perspective.
Hi Erin,
I’m so sorry – this is really a hard time and it can be very overwhelming. Most of my recommendations are from the biomedical part of treatment because my child is very medically ill. I’d like to recommend the Thoughful House list. You can subscribe by going to thoughtfulhouse.org and click on “About Us” and then click on the “Join OUr Listserv”. There are many parents both old and new to this that may +be able to offer advice. You don’t have to go to the Thoughtful House to ask for help on this list.
You should credit yourself for asking for help and for seeking out other parents. This will greatly help you and give you the support you need. My other advice is to educte yourself as much as possible. This won’t come overnight, it will take time to digest all the information there is out there.
I really hope this helps – please check back to this site frequently, there is so much wonderful information here.
Theresa
Hi Erin,
I too have a son that was diagnosed with Autistic Spectrum Disorder and Pervasive Development Disorder at 20 months. It is a very difficult thing to accept. I remember how difficult it was but try to keep positive. You are lucky to catch this at an early age. Early intervention works best the younger the child is. The best advice that I received at the time of his diagnosis was from another parent with a child on the spectrum and I want to pass it along to you. It was the best advice I ever received. She told me that the best thing I can do for my child is to:
1. Educate yourself with all the information on the disorder. Being knowledgeable will empower you to help your child reach his/her highest potential.
2.Do not waste any time or energy on wondering what you did or what caused this to happen. Keep focusing on what you can do to help your child.
3.Get to know how early intervention works. Get as much therapy for your child as soon as possible.
4. Get your own Pediatric Neurologists and Pediatric Psychologist to evaluate your child and recommend therapy’s. Then request them from early intervention. You can ask a recommendation from your pediatrician.
5. Even though your child will not be eligible for special education preschool until she is 3 years old start checking out the schools in your area. Make appointments to see each of the schools and find out about their programs. My Neurologist gave recommendations on which schools were best for my son’s needs.(some schools have wait lists so the sooner you go the better chance your child can get in) See that the school has all the therapies available on site that your child is currently obtaining.
This advice played a major role in my son’s progress. My son at 16 months lost the minimal amount of words that he had and stopped talking. He would lie on the floor and roll around Thomas trains. I was able to enroll him in Early Intervention and he was given Speech Therapy, Applied Behavior Therapy, and Physical Therapy. This was done at home. I had wonderful therapists that helped me to redirect my son when he was doing inappropriate behavior and have tantrums. At 3 years old he was enrolled in a special education preschool that continued his therapy. By the end of the 1st year his speech had improved tremendously and he was learning to play with other toys and children hurray! It was such a relief that he was progressing so much and not slipping away from us anymore. He is currently 4 years old and he is now able to have limited conversations. He is a happy lovable child that has come out of his shell. He still has many milestones to overcome but with all the love and support he is on the right road to recovery.
Therese
Hey Erin,
Try looking at what Cameron is doing from a different perspective. In response to this, an actual quote from when my child was playing alone with his toys, and not in what would be considered a “normal” way, a young man stopped, looked at my son and said, “That ain’t right.” I smiled as he went to clod off and said, “Yes, but look at what he IS doing!” What he was doing was far more analytical and introspective with that toy than what the other children were doing! I was fascinated watching him!
Another time I found myself in tears at Gymboree. I left the play room and went into the hall. My friend and the director joined me. The director said, ” Not every child enjoys circle time.” I had been fighting to keep him in my lap and happily engaged as all the other children seemed to be, with their parents, in that activity. My friend put his arms around me as the director walked away and said, “Be happy that he’s not sitting there like an idiot going along with the program. Maybe he has better things to do than ‘Wheels On The Bus’ with Gymbo.” I laughed. I think my friend was right.
A lot of how you feel is how you look at any situation.
In the meantime I am a staunch believer in behavioral therapy, REBT most notably, and disciplined behavior modification, though I cannot stress enough to choose ALL your battles wisely. You’ll find in many instances that Cameron will gravitate towards her strengths and what is right for her, what she needs intellectually for herself, to grow into the person she’ll need to become in order to survive. Don’t enable her by feeling so badly that you give in to what you know in your gut cannot serve her well. Don’t be ruled by guilt.
In time she’ll show you what she needs to learn, try not to be obsessed by what’s normal and to focus on what’s normal for her, what will and will not work for her as she grows, and, as long as she’s not causing herself or others harm, make concessions and choose your focuses with rational wisdom.
If you’d like to email me via the feedback form in the link associated with my name here, I’ll be happy to send you some simple files on things such as Pointers For Parents.
In the meantime, ask yourself why it bothers you that she doesn’t want to kiss her doll or prefers to collect toys rather than play with them, is self-isolating. Many great researchers started with the same behaviors. Maybe one day she’ll make new discoveries that will wow the world because rather than hanging out with her friends at the mall she’ll prefer to collect and classify specimens she finds in the yard playing on her own. You have a great independent mind in her. And so you will help her develop that.
I have every confidence that she’ll get the supports she truly needs in her areas of greatest concern and grow to be a young woman you’ll be proud of. With positive early intervention, which you are absolutely providing, I can promise that later in her life the two of you will laugh about some of the greatest fears you’re having for her today. I know I lived to enjoy that moment with my son.
Lose the anxiety, it won’t help anything and she can feel it, she can feel your fear and knows you are upset. Revel in the characteristics which you can see are her strengths. Maybe her purpose in play is different from the other kids’. She’s thinking about what works for her. Why not follow her lead, of course, without being enabling?
I’m so happy for you that you came HERE!
Love and luck,
Roberta
You’re doing the right things. Hang in there. But you should know that often times the therapist Early Intervention sends over aren’t always the best, but the ones who are available. I’d keep a close eye on their effectiveness, and consider hiring your own. Also a great book to read particularly for you since your child was diagnosed so young (which makes your chances of improvement so great) is “Let Me Hear Your Voice” by Catherine Maurice. Her daughter was 2 when she was diagnosed, and the pages can give you some hope. Best of luck.
Food sensitivities can make a tremendous difference in a child’s life… physically, emotionally AND cognitively.
I urge you to explore pecanbread.com. Many parents who did not experience success with the gf/cf diet now swear by SCD (Specific Carbohydrate Diet).
Also another link that may provide some hope was written by another Mom: Shannon and Laura’s
I also experience headaches with gluten (among other things) and found out via my own very ill son that gluten is not a friend of our family. Here is my food blog with some gf, gf/cf and scd recipes to help people get started:
The Goblet
There are more links at my blog under the title Great Blogs of Gluten.
hth
Good luck to you, you are in my prayers!
Kind regards,
KimS
Hi,
My daughter Alana was exactly like your daughter at that age. We’ve have intensive in-home therapy and her I.Q. went up 28 points in one year!
That being said, don’t give into the notion that your daughter is damaged or not “right.” We make sure her behavioral therapy is fun for her and meaningful. If she doesn’t enjoy it, its not being done right.
This is important: don’t get caught up in “curing” your daughter. Find her strengths and interests, and connect to her that way, and use her interests to boost her communication skills.
Don’t worry right now about her connecting with kids, spend your time investing in her communicating. Pull as much language from her as possible, asking for more all the time. Get on her level as much as possible.
Behavior therapy should also be done every day. Hire your own therapists to supplement what you get, move to a state that provides more (seriously), or learn to do it yourself. Read Dr. Carbone! He’s taught me while we were on the waiting list.
My dauther’s I.Q., BTW, increased not because she was not bright and then got smarter, but because she learned how to communicate enough to take the test. She read her first word at 13 months…it was almanac.
Find her strengths. Enjoy her differences! I agree with the writer who said to look for adults with autism. They brought me out of the feeling sorry for myself stage. Read their writings, email them, find their blogs.
Erin
not all things is going to work as easily as it did for another child. you try what you think may work for your daughter, don’t get discouraged if it doesn’t help, and move on to the next. you don’t at all have to explain all you’re going through, I’m sure most of us have been there and felt much as you are feeling now.
no matter what- changes do not happen over night. appropriate toy playing included. you as parents are going to be your child’s best role model and therapists- start playing games and ‘house’ so she can have a visual. there is also no one book for each parent, you’re not always going to know what to do exactly, or the right choices and do you know what? none of us do. you will make mistakes and that’s perfectly ok.
on a more personal note- when I kissed my son he slapped and scratched where I kissed. when I did this to his baby doll, he slapped and scratched it’s face as well. you can learn a lot through a doll and a child with autism. my child thought we all feel that way.
you give your daughter her zoned out times, but each day step into her zone more and more. you need to show her why being her with us is better than where she is alone. play with the toys appropriately and try to get her to share in that way, a little each day.
and remember, who she is today will change. all kids with autism progress at their own rate, I myself a little wait time
you hang in there
Hi Erin,
These are the best pieces of advice I’ve ever seen grouped in one place!
I have 2 children on the autism spectrum.
The only thing I would add to everyone else’s advice is to give yourself permission to take a break from everything on a regular basis. Having someone babysit for you once in awhile so you can do something that’s all you will help decrease your stress.
Namaste
One thing that I haven’t seen listed so far is this: give yourself permission to grieve! You have lost the child you thought you’d have, as surely as if she was here and then died. She didn’t physically die, but your idea of her did. So grieve – feel bad. It’s OK. At the same time, though, get to know this wonderful new person you received in your “ideal” child’s place: Cameron. Slowly, over time, your memories of that “other” perfect child you thought you were getting will become smaller, more distant, less significant, to be replaced with wonderful memories you will make with Cameron. If you haven’t read “Welcome To Holland” yet, take the time to Google it and read it. To paraphrase, Holland may not be where you planned to end up, but it’s a perfectly lovely place with a lot to recommend it, if you only open yourself up to finding the joy in it.
Second, remember that a lot of your concerns about Cameron and her behavior are based on what makes YOU happy (or Grandma, or the neighbor, or whoever). I think most parents, when asked, would universally agree that what they want most for their children is for them to be happy. So, if it makes you happy or Grandma happy for Cameron to acknowledge you and greet you with kisses and open arms, recognize that that is YOUR definition of happiness, and not hers. She may be – and probably is – perfectly happy lining her blocks up in a row or picking out all the purple toys or whatever. Try to be happy for her, and thankful that she is at least content, rather than resenting the fact that her happiness doesn’t match your definition of happiness.
Finally, give up hope. I know it sounds strange – the first time I was ever told to give up hope, myself, I thought, “How terrible! I’ll NEVER give up hoping for my daughter!” But then the man who gave me that advice explained: As soon as you give up hoping for the situation to be different, hoping that a miracle cure is right around the corner, hoping that she’ll make eye contact and smile, or whatever, then you can begin accepting what you have. I saw the wisdom in that approach finally, though I still think it is a fine line to walk, balanced between always hoping that things will get better and “settling” for the way things are. I don’t look at it as settling as much as blooming where I’m planted. When I stop obsessing over how much I want things to be different for my daughter, the more time and energy I have for just enjoying her and the time I have with her. She is beautiful, strong, independent, and intelligent, and over the years has taught me more about patience, creativity, and joy than I could ever hope to repay her. If I had constantly been focused on wanting her to be “different” than she is, I may have missed all that!
Finally, realize that Cameron is young yet – when my autistic daughter was that age, we still didn’t even know what was wrong with her, let alone what to do about it. When my daughter was three, I didn’t know if she would ever speak, and I was positive she’d never even be able to attend a “normal” kindergarten. By 4, she could at least say a few words, but I thought if she went to school at all, she’d go in diapers. But when she was 5, she was not only potty-trained, but she DID go to a regular ed kindergarten in our public school system. She is now 15, and though she definitely still displays all the characteristics that led us to suspect autism in the first place, she is verbal, capable of self-care, can read and write (albeit on a much lower grade level), and is able to interact with others – friends, family, and strangers alike. So realize that where you are now is not where you will always be.
I feel for you – I know it’s hard. But it does get easier over time. Keep your chin up and take a break when you need to, cry when you need to, but then get back up and get back in the game. It will all be fine, I promise.
Dear Erin,
My son is 20 years old son with Autism Spectrum Disorder and Tourettes. He wasn’t diagnosed until just prior to his 5th B-Day. Even though he is high functioning, it is clear that is has these disorders. As soon as he was disgnosed by UCLA, I was directed to contact the Autism Society of Los Angeles (ASLA), (EXECELLENT ADVICE). I highly reccommend arming yourself with as much education as possible. I ended up becoming the ‘chair person’ for the parents support group for the ASLA. As a result I was surrounding myself with ‘experts’ from around the country and around the world. I felt much better knowing that I was obtaining the best reccommendation and advise. Once that was satisfied that I was bombarding myself with useful information constantly. Also by becoming a ‘chairperson’ for the parents support group, I began to feel normal again. I was fortunate enough to meet Gerry Newport the founder of the adults with autism support group and I frequently conversed with him on many matters, (we are friends now). When I first met Gerry, I was crying about my son and his disgnosis to him. I was really surprised when he congratulated me on my son’s autism. Since that time, I feel so much better because I now focus on his strengths (which there are MANY!!!), although they are different than most other peoples strengths. Celebrate your child with autism!!! They are my favorite people now. HONEST!!!
It’s important to arm yourself with as much education especially in the area of tolerance and her educational career as you may find yourself having to defend your child with autism from a myriad of people including the school system both public and private.
Also, when my son received his disgnosis, the autism ratios were 10,000 to one….presently they are 160 to one!!! SHOCKING!!!!! I feel that we ‘typical’ will very soon be out numbered and we will have to learn to adapt to a whole new world where there will be more people with autism than not, (my esitmate is 3-5 years).
Best wishes to you and your family always!
The Right Advocate
HI Erin
The one most important thing I have learned is to love your child as they are. You must fully accept them the way they are. That feeling of complete acceptance they will receive from you will help them more than anything. Our son has done all the therapies but his progress did not go speeding ahead till I full accepted him as he was. Then with a feeling of full acceptance and love his progress took off. I also was much more at peace.
Erin,
Applied Behavior Analysis (ABA) is the one treatment that is scientifically proven to help children with autism.
I would recommend that you read my book: The Verbal Behavior Approach: How to Teach Children with Autism and Related Disorders. I wrote my book for parents like you who need to learn how to implement ABA programming. The Verbal Behavior Approach gives parents (and professionals) a step-by-step guide to teach language and other important skills using a behavioral approach. Check http://www.vbapproach.com for more information.
Huge ditto to all those who have mentioned ABA and its positive effects. I will say something that probably sounds a little radical as well: if you are in a state where EI is coming to your house only twice a week, even *after* a diagnosis, then you may need to pick up and move. There are states in the US that are well known for strong education and EI programs (generally those with high income taxes), and there are, unfortunately, many that are NOT. If you are in any position to move to one of the more generous states, and there is not much tying you to your current location, I would give serious thought to moving. Especially if the state where you live doesn’t heartily support, or fund, ABA.
This is a very hard thing to accept and even harder to deal with. I have a 13 year old who we have done all the early intervention we could and a tip for sensory issues is this. Take the spongy thing they give at the hospital and rub it all over your child’s arms and legs and back. Not the stomach as this could result in some kids the urge to vomit. It sensitizes them so that they can become used to other senses. My son could not stand the tag in his clothes and had to wear soft pants. The de-sensitizing really helped. I too have shed tears and tears. Find alocal respite that gives you a break for and hour or two a week and take the time for YOU. My child with autism was also my first and I still think ‘why me’? Keep in mind that there are others out there who would love to reach out to you and give you a hand.
Dear Erin,
I am so sorry to hear your news. I know this is a difficult time.
My daughter was also diagnosed at 20 months and is now 3 1/2.
I feel it is very important for parents to understand that some of our children are medically ill (I did not understand this in the beginning). My daughter has definite fungal(yeast) infections and viral infections in her body that cause her symptoms. So, I also recommend medical and biomedical interventions along with therapy. Some doctors prescribe supplements and others medications. I do feel that diet is key, this is where we see the most improvements in our daughter. We began with the GF/DF and moved to the SCD and this still wasn’t enough so we have transitioned to the Body Ecology Diet (www.bodyecolgydiet.com). Since then (5 weeks ago) we have seen Meg’s eye contact improve dramatically, she is gazing into our eyes and she is trying to make sounds for speech. Though there is not yet a cure there are doctors and therapists who have found things that help our children feel better. I recommend researching and getting several opinions as you are making decisions for what might be best for your daughter. Most of all, I recommend prayer. Prayer has provided us a great comfort and guidance. Good luck to you and your family, our children our precious and I do believe there is a reason we are going through this difficult disease/disorder with them.
Fondly,
Debbie
My son is Autistic, and now 18. I’ve learned over the years never to force social contact; as he grew into his teen years he selected friends, few, and I stress few (2 to be exact) but they are lifelong quality and dear to him. He has opened himself socially to “dating” (defined as exchanging calls and lunch at the mall), and although his world is from a different view from ours, his intellect and perception are not incorrect, just different from accepted norm. Accept that your daughter is in “her own world” and she may enjoy being there. I write this on Mothers Day – A holiday that has no meaning to my son. I KNOW that he loves me, in HIS own way. He doesn’t touch, or tell me emotions, but I may find a new candle or strange sea shell left on the table as a present.
Look at the little things. Love your daughter. It’s time to dry the tears and live in her world when you can find an entryway.
I’VE BEEN WHERE YOU ARE AS HAS EVERY OTHER PARENT OF A CHILD WITH AUTISM. THERE WILL BE A LIGHT AT THE “END” TUNNEL, OR AT LEAST CANDLES LIT ALONG THE WAY. FIRST TRY TO REMEMBER THAT YOU HAVE AUTISM AS A FAMILY, IY DOESN’T HAVE YOU. OWN THE DISEASE. DON’T TRY TO HIDE IT, YOU CAN’T. ACCEPT YOUR BEAUTIFUL DAUGHTER FOR EXACTLY THE PERSON SHE IS TODAY, AND IF OTHERS CAN’T IT IS THEIR LOSS. THINGS SLOWLY BECOME BETTER AND A LITTLE MORE PREDICTABLE. MY SON USED TO HIDE UPSTAIRS WHENEVER ANYONE CAME TO VISIT US, AND REFUSED TO GO TO ANYONE ELSES HOME. NOW AT NOT QUITE 4 HE LOVES HIS COUSINS AND AUNTS AND UNCLES, AND WILLINGLY GOES VISITING. HE WILL EVEN GO TH THE GROCERY STORE WITH ME AND ACTUALLY HELPS. NEVER,EVER STOP BELEIVING IN THE POTENTIAL OF YOUR CHILD. KEEP TALKING TO HER AND KEEP REASONABLE EXPECTATIONS OF HER. BE KIND TO YOURSELF, AND CHOOSE YOUR BATTLES WISELY. GOODLUCK AND GOD BLESS, YOU WILL COME OUT OF THIS A FAR BETTER AND STRONGER PERSON THAN EVER THOUGHT {OR WANTED} TO BE.
I wrestled for many years wondering, “why me?! Why was my son born purple when he was supposed to be blue?” It was nonsensical to me…what had I done to deserve this, what had my child done? It was rough, especially being a single parent. I fought many battles, alone, as no one understood, and in addition I was blamed for my sons behaviors. But throughout my battles in advocating, I realized that I could speak up, I cluld learn what I didn’t know, I could walk into a meeting an articulate what I thought my child needed, what his rights were, what I was demanding! At that point I realized something, that with my strength and ability I still had to fight, and fight hard without knowing the end result or the road ahead. Instead of being discouraged, I wondered one day what it must be like for parents who don’t know their child’s right, or understand their needs, or don’t have the capacity to take time out of work, or speak in front of a team of people with credentials, or as I like to say “with letters after their names” withput being intimidated and quieted…it must be so much harder! And it was then that I decided to use what I had gone through to try to make a positive difference in the lives of families going through similar experiences. Now I can say that my son has taught me and made me a better person! He has touched the lives of over 100 families and children that I was able to help, because HE brought me to where I am! Without him, I would not be me, I would not have the capacity to empathize, to see the world through the eyes of someone like him, to be able to love with the capacity, greatness, and innocence I’ve learned from how he loves!
I believe in life there is a reason for everything, even if we don’t understand what that reson is…I was given this at the first job I worked providing case management and coordination of servcies, and it helped me feel so good about “WHY ME?!” I had lost the paper and was able to find it online and have pasted it below. I hope it helps you feel like the special and unique individual that you are, because you will find that in your daughter you will be blesed with such unique gifts not seen in other children. Although I hope and fight for my son to be his best, it is his best not the world’s and I wouldn’t change him for anything! My son is 10 and he said to me about a month ago, “mom, if there was ever a cure for Asperger’s, I never want it okay?” Emphatically, Okay!
God Chooses a Mom for a Disabled Child
by Erma Bombeck
Most women become mothers by accident, some by choice, a few by social pressures, and a couple by habit. This year, nearly 100,000 women will become mothers of handicapped children. Did you ever wonder how mothers of handicapped children are chosen ? Somehow, I visualize God hovering over Earth selecting his instruments for propagation with great care and deliberation. As he observes, he instructs his angels to make notes in a giant ledger.
“Armstrong, Beth; son; patron saint, Matthew.”
“Forrester, Marjorie; daughter; patron saint, Cecelia.”
“Rudledge, Carrie; twins; patron saint… give her Gerard. He’s used to profanity.”
Finally, he passes a name to an angel and smiles, “Give her a handicapped child.”
The angel is curious. “Why this one, God ? She’s so happy.”
“Exactly,” smiles God.
“Could I give a handicapped child a mother who does not know laughter ? That would be cruel.”
“But has she patience ?” asks the angel.
“I don’t want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she’ll handle it. I watched her today. She has that feeling of self and independance. She’ll have to teach the child to live in her world and that’s not going to be easy.”
“But, Lord, I don’t think she even believes in you.”
God smiles. “No matter. I can fix that. This one is perfect. She has just enough selfishness.”
The angel gasps, “Selfishness ? Is that a virtue ?”
God nods. “If she can’t seperate herself from the child occasionally, she’ll never survive. Yes, there is a woman I will bless with a child less then perfect. She doesn’t realize it yet, but she is to be envied. She will never take for granted a ’spoken word.’ She will never consider a ’step’ ordinary. When her child says ‘Momma’ for the first time, she will be present at a miracle and know it ! When she describes a tree or a sunset to her blind child, she will see it as few people ever see my creations.
“I will permit her to see clearly the things I see — ignorance, cruelty, prejudice — and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life because she is doing my work as surely as she is here by my side.”
“And what about her patron saint ?” asks the angel, his pen poised in midair.
God smiles. ” A mirror will suffice.”