Parenting a Child on the Autism Spectrum
- Managing stress: pregnant and have an autistic toddler
- Exhausted by angry autistic 10-year-old son
- Inclusion in regular day care with Autistic child
Hello. I am currently pregnant with my second child. Around the time I learned I was pregnant, I also learned that my first child (now 19 months) has autism. I am very stressed all the time from the effort it takes to fight the regional center and insurance to try to procure services. I write letter after letter, file appeal after appeal, consult with moms, attorneys, etc (it's been 3.5 months and still no services, even though no one denies he has autism) . All this, and my son is not an easy child (e.g., very limited communication skills, needs to be engaged or he stims all the time, always hurting himself because of poor balance and he doesn't understand ''no,'' still doesn't sleep through the night, etc.) Because no one knows what causes autism, I find myself stressed all the time that I will do something that will hurt this baby, too.
If anyone out there has been through a similar situation, I would really appreciate hearing how you managed your stress and coped with all the uncertainy during the long 9 months. Thanks anonymous
I feel your anxiety and understand that it is such an uncertain time. I have two boys, 19 months apart. My 3 year old is Autistic, my 19-month old toddler is not. When I became pregnant, we didn't know our older one was Autistic, but it slowly became apparent after our second was born. Our second son is not autistic, quite the opposite, in fact. I feel like he's such a gift to my older son...he forces him out of his own little world, forces him to be social, and they laugh and play together. A perfect social companion and life-long wing man!
My last year, however was really stressful. We bought a house, moved to Oakland -- at the same time we had an infant and our 2-year-old wasn't talking and was showing autism red flags. I did go through the Regional Center East Bay for evals/services and had a really good experience. It all felt slow getting off the ground b/c I felt such urgency. We ended up private paying for speech therapy 2x's/week until the RCEB services started up. We were granted 25 hrs/week of ABA therapy (which STE Consultants administrated) and 1 hr/week of private speech (Word Works). The early intervention services were amazing and really kick-started my son's ability to communicate (he was 2 yrs 5 months when the intervention services actually started and he couldn't talk or even communicate a simple need.
The good news is you caught it really early, you are on it. The services will start. I can't advise you with RCEB, because we had a good experience. (It did feel slow, overwhelming and confusing though.)
Life feels out of control for you right now, and that is so hard. Things turned a corner for me when my son started talking and communicating. A little time had passed, I was getting used to the dx and I finally had the perspective to see that he was going to be ok. Life was different than I had envisioned it, but we were re-calibrating and we were going to be ok. And that's the scariest, most stressful thing -- when you can't see down the road and you don't know if he's going to be ok and you don't recognize what's happening to your life...and you're expecting. I hope you're soon able to get to that place where you realize that he's going to be ok. Be kind to yourself too...you're a pregnant lady after all. Be well, hang in there, you will feel so much better when those services are in place. -Mom of 2
I just wrote the previous post - Mom of 2 - and thought of some practical advice too -- I'm sure you're probably doing a lot of this already:
- get a dedicated file box and keep really good files
- get a dedicated notebook and take dated notes on everything...get everyone's name and contact details
- ask your insurance agency for a case manager for your son
- document everything w/ insurance, have things/promises sent in writing. (I got bogged down here b/c my insurance was slow in getting me docs that proved that he was denied coverage)
- follow up follow up and stay on people's radar when you're trying to get the appropriate docs from them.
- consider getting him into speech therapy asap if you can afford it -- at least it is some intervention; get a therapist who has experience w/ autism.
- if you live in the east bay, make a call to the Family Resource Network alameda co. and get their advice on how to proceed. If you're out of county, they can probably tell you who to contact. http://www.frnoakland.org/
- keep notes about his development and when things happened, what concerns are. You'll be asked about them ad nauseum and you'll be surprised what a blur this whole time is.
- if you know the regional center is going to pay for ABA therapy, you could look into getting a Floortime therapist to start coming (something you pay for) as a stop-gap and to help give you some tools to work with your son. We didn't do this, but it could be an adjunct to ABA and something you can start while you wait. You can also get a DVD training course on this approach.
- I found reading books about Autism just sent my anxiety levels through the roof. It wasn't helping. So I really did set the books aside until it wasn't all so overwhelming.
- When Regional Center's services start, you are entitled to respite care. Take advantage of this. (Depending on your income level they either pay fully or partially for a babysitter so you can take care of yourself.) Do you swim? Now's a great time to start. It's peaceful, meditative time to yourself, great exercise, inexpensive and a wonderful stress release. Yoga is too. Start something that is just time for you. Mom of 2
Wow, I could have written that exact post, but 6 years ago. I would say the number one thing that helped with my situation, at any point during my autism journey, was having a support group of moms in the same place that I was. Mine was/is online and an online support group, IMO, is as good if not better than anything you could find in ''real life.'' Feel free to contact me directly if you want to talk or if there's anything I can do to help you with what you're going through. Jill
I just wanted to extend my sympathy for what you are going through. The way you describe you son sounds so much like my son. One thinks it is the big symptoms of autism that are hard (poor communication, tantrums, stimming etc) but even things like 'poor balance' are hard - for us the poor balance can just drive us crazy - our son is constantly whacking us by accident, grabbing at us to keep from falling, banging into things, knocking things over - it is physically exhausting to be around him.
We didn't have any more children (too exhausted!) so I didn't experience dealing with stress while pregnant but I had to write because I felt so bad for you.
Re the stress, I agree, it is really important to keep the stress levels down while pregnant - there are several studies now showing that extreme stress while pregnant can be very detrimental to the baby. The question is how...
1. join SID-DSI_AllAboutKids [at] yahoogroups.com - it's for kids with sensory processing disorder so it is more of a spectrum group but gives a lot of emotional support & info on getting services in the school but it is nationwide. Another good one for just the Bayarea is Autism-Biomed-Bayarea [at] yahoogroups.com. I would post your problems with getting services on both these groups along with your stress question and see what responses you get - I think you'll find it very helpful.
2. Get a babysitter, even if I had to borrow money to do this I would, for the rest of the pregnancy and for the first 3 months after birth, it is so important to control your stress right now. Even if you already have a few hours free each day from your son, he may be too stressful and so you need MORE time.
3. Thought I'd just throw this out there in case you aren't already doing it - put your son on a gluten free casein free soy free diet. When we removed casein, we lost 50% of our sons symptoms within 2 weeks. This is NOT the case for every child, only those with a problem with casein. In our case, it was very obvious that he had a problem with casein (dairy) as he wanted only dairy and tried to refuse all other types of food. If you find yourself saying 'but if I remove xxx then he wouldn't eat anything (fill in the blank with milk, yogurt, or bread, noodles, etc) then that is a red flag and probably a problem food that may be causing many problems.
I am so sorry for your stressful situation and please know there are people out there worried for you and sorry you have to go through this. anon
My oldest is autistic and I also have two neurotypical younger children. My second was conceived and birthed before the diagnosis. I got through the third pregnancy knowing the new baby would be on an extremely delayed vaccination schedule and believing that would and did make a difference. I also tried to make the best dietary choices I could. I urge you to checkout Julie Matthews http://www.healthfullivingsf.com/ who is a nutritionist dealing with both autism spectrum disorders and prenatal care. She can give you the best advice on what to eat and do during your pregnancy and what to avoid. Also, you should read Rodney Peetes book, Not My Boy! He has a great section on siblings at the end. This child may just be the best ''therapy'' for your older one! Lastly, I would envision everyday the joy you are heading for in raising a typically developing child. Siblings of autistic children tend to be extremely intelligent, mature, caring people. Congratulations!
If you do not already know about Peninsula Parents of Special Needs Kids (PPSNK), I would encourage you to join this local listserv. Although the members are largely on the peninsula/south bay, the posts are often about more general advise so that location does not matter. It is a very active and helpful community run by a terrific moderator who herself found out her son had autism while she was pregnant with twins. Her son is now 10 years old and she has recently published a book called ''Coloring Outside Autism's Lines: 50+ Activities for Families with Children with Austism.'' The listserv is a yahoo group, and you can subscribe at groups.yahoo.com/group/peninsulaparentssnk/ (I think). Best wishes to you. Stephanie
My 10 year-old son who is special needs, obsessive compulsive, and autistic seems to go out of his way to make me angry at him. I had a baby over the summer and have an 8 year old son and because of my 10 year-old's behaviorial issues, I have to homeschool him. He is an extremely challenging child and has been since birth. He still has tantrums and will burst into a rage in public if he doesn't get his way. He's always mad at me for something and will tell me he hates me. When he gets his extreme fits for a toy or an outing, I try my best to be patient and walk away from him if I find my head wanting to explode into a headache. Lately, I have felt extremely tired and frustrated that upon my boiling point I start yelling him to stop, he'll start laughing and laughing, whicn only antagonizes the situation. I know I can't spank him because I'm afraid of my own strength and worry I may get carried away. My parents aren't available to give me a break as they're too dysfunctional. My in- laws aren't helpful as they are always judging me and my husband on our son's behavior, which is not a reflection of his parents. I feel utterly frustated, exhausted, and exasperated as he takes away so much of my energy, and guilty I can't give as much to my younger two sons. Sometimes I just wish I could walk away and never come back but he worries me so much as he has a hard time making friends and seems to be jealous of my middle son but thankfully not of the infant. I feel pulled in all directions. My husband is hands-on and will take him to the park, help with school work, take him to activities, just take him for a walk after dinner, and spend quality one on one time with him and the other boys, so he does what he can after his full time job, but I don't know if I'm just tired having just had a baby. Please no negative posts. Negativity doesn't help me. I have heard more than enough from family and close friends who simply don't know what it is to live with a child like this. Thank you. Sad Mom
Oh wow, you have your hands full! I wonder a few things; is your son getting appropriate therapy? Is there the possibility for family therapy with someone skilled with autism? Are you absolutely sure homeschooling is the right choice for your whole family right now? There must be good schools out there for autistic children, but I'm guessing they're all private. If you are sure about homeschooling, I would recommend something called Enki Education...www.enkieducation.org, which has been very popular with parents of children on the autistic spectrum because of the attention given to sensory integration. In addition it focuses on the parent-child relationship in a very positive and unique way. At this stage there is no fixed curriculum available for your son's age but a consultation with the director, Beth, may be extremeley helpful in addressing your concerns.
Now, last but NOT least, you need to focus on self-care. Space and time carved out for yourself, maybe meeting with parents of special needs children in a support group, or just taking time out to meet your own needs. You have taken on a huge job, and will burn out fast without support and care anon
My child has special needs and here is my advice to you. PLEASE get some of the help from public agencies that you are entitled to. First, send your child to public school immediately. This will give you a break and if he has behavioral problems at school this is the school's problem--NOT YOURS. I can't stress this enough. A special needs behavior problem that is happening at school is THE SCHOOL's problem--NOT YOURS. They have to do what they need to do to control his behavior so that he and the children around him can learn. He is entitled to a free and appropriate education and you should not have to home school him because of his behavior issues. If the local school won't work for him then they need to send him somewhere else that will work like a special day class or a place like Alameda Children's Center. Depending on your school district the school psychologist or district behaviorist may be able to come to your home to help with behavior problems if they interfere with him doing homework. I doubt that your son is really ''autistic'' since so many kids with problems these days are given that label and it doesn't mean much anymore. (Besides you mention that he is jealous and that he does make friends.) But if he really is ''autistic'' you may be able to qualify for additional help from Regional Services including a behaviorist and some small amount of money for respite care. You are doing an enourmous amount of work right now--I can't even imagine trying to do what you are doing! Please give yourself a break by calling your local school district's special ed. department and starting the whole evaluation and placement process. It will be good for your son to be in school with other kids. Keep after your school district--it is the federal law that your child not be excluded from education due to special needs.
Also, maybe you can see a specialist who can help you set up a behavior plan at home so that you can try and deal with your son's behavior in a systematic manner. I know this is super hard! Sometimes following your instincts about how angy you feel isn't the worst thing to do--different kids need different amounts of imput to get the point. another special needs mom
I know how it feels to have a child who's like this. I often feel like walking away too (and might if I didn't have other children). You need help, especially if he's with you 24/7. Where I live (near Fremont), we were able to find peer counselors -- younger people who are getting their degrees and who are willing to spend time with our son for much less than the usual therapist rate. If this doesn't work, run him -- hire young adults to take him for bike rides, hikes in Tilden, bowling, etc. We've found the more tired our son is, the easier our evenings are. Have you checked out special schools -- Star Acadmey in Marin for example so you have some time away from him? This is a frustrating, exhausting situation and I really feel for you. Another Mom of Angry Child
The situation you describe must be incredibly stressful. With your son's symptoms there is no way that this is just ''bad'' parenting! You need a break and you need support. Here are a few thoughts. First, perhaps you should reconsider the home schooling. Your school district has a responsibility to provide schooling for your son that takes into account his special needs.
Insist on an evaluation, and if necessary, pay for a second opinion from an educational psychologist. Are you aware of any private schools or boarding programs that could help your son?
If this is the only way to give him adequate schooling, then the school district must pay for it. (For example, our school district has paid for students to go to the RASKOB institute in Oakland). It takes a lot of persistence, but it may be worth the effort. Second, see if you can find some books on raising an autistic child that you can share with your in-laws. Talk with them frankly about how difficult it is for you and your other children, and see if you can arrange some type of respite time with them. If they cannot provide help with your oldest son themselves (after all, he sounds very difficult), perhaps they or your family could chip in to provide for a helper who comes in occasionally for your son, or they could take the other two, to give them a break. (My son went through explosive rages for several years at about this age, and I would take his toddler brother, and his sister if she would go, over to the neighbors until he was back under control--embarrasing, maybe, but it wasn't like they didn't hear what was going on, and they were very supportive, not judgmental). I found having a diagnosis was very helpful with my family and friends, so educate them with books, documentaries, web sites--whatever you have at hand.
There is an organization headquartered in Berkeley--DREDF http://www.dredf.org/, that can provide a lot of info on the rights of parents of kids with disibilities (which is what your son has). I wish you strength, patience, and luck in dealing with this Anonymous
I hear you, and you have my support. Sorry I don't have any more specific advice than that, other than to say you sound like you're doing the best you can. Is it possible to get connected with a support group for parents of special needs and/or autistic kids, or find some resources for respite care? You need to take care of yourself, too Anon
Hello, Sorry to hear you are having such a rough time. I volunteered at the Son-Rise Institute in Sheffield, MA. They have an amazing family program for working with Autistic children. Check out their family programs. For info check out www.option.org Also, you might want to consider checking out the Landmark Forum-its a personal development and empowerment program that is really wonderful. www.landmarkeducation.com Best to you, David David
Growing up, I was the oldest and the only girl. My middle brother was VERY angry and while not autistic, I think in today's age he would have been tagged with some learning disability. My mom and dad did family therapy with him for a few years, from 8 to about 12. While it wasn't anything miraculous, it helped my very blue collar (and in my dad's case, no high school diploma) parents get a better grip on different ways to deal with him. Fast forward t m y youngest brother, whip smart and a different kind of angry, more internal and crafty, but stubborn. He and my mom started to lock horns when he was about 13 and because of my mother's anger and frustrations, by the time he was 14 they were having full-on physical fights - my brother kicked her in the chest once as she ran up to him laying on the couch, she punched him in the face hard while wearing rings with hard stones in them. I could go on.
School was complaining about him, other parents... so he entered therapy as well. Therapist asked that my mom and dad also go, but my mom got uncomfortable after a few sessions of seeing that she would need to shoulder some blame and she refused to keep going. At that point, the therapist suggested that under the circumstances, it would be best if as soon ans my brother started pushing my mom's buttons she would call my dad up and then walk away. If he was anywhere but work, he needed to drop everything and come home and deal with it. (I should add in here that my dad was very hands off when I was my brother's age - my mom was working FT and keeping house, going to PTA meetings, being a housewife and working and my dad was for way too long living the life of the 50s dad who worked, came home, cracked open a beer and watched TV until dinner was ready). So they tried that and to this day my mother said it saved her marriage, her sanity, AND her relationship with my youngest brother. For years, they barely dealt with each other beyond pushing buttons a little and then my dad stepping in. And then one day, it seemed like my brother snapped out of it and by then, after years of therapy, my dad finally stepped up in his own ways, and today, with her children 38, 35, and 32, you'd have never guessed how incredibly screwed up our house was (unless you looked really closely ;) )
In any case, I am not sure if ANY of this might help, but I wanted to give you hope. What helped my mom was being somewhat absolved of dealing with my brother. Maybe you need a long-term break of sorts anon
Dear Sad Mom, First let me say, my heart really goes out to you. You are dealing with a huge amount at once (3 small kids alone is challenging enough, and then to add to the mix a child with very demanding special needs) while you are just trying to get through the crazy making post-partum period.I have two sons, the older (7) has special needs (mostly social communication issues) but he is, thankfully, also an extremely loving and upbeat guy. Even so, I couldn't do it alone! And you should not try to! I think it is a big mistake to homeschool this child.
If he has OCD and autism, these are serious issues, and you and he need as much good, professional, caring help as you can get. He deserves to have the support of good special education teachers, counselors, aides and other professionals provided by the public school and (if you can at all swing it) as much private support (therapists, babysitters) as you can afford.
This is not only for your benefit (though I believe, from my own experience, that it would go a long way towards helping you feel a lot less alone and desperate) but for his as well. He truly needs the help of people who know how to deal with his problems, and who can steer him towards confidence and success. He might very well be a lot less angry and tempermental if he had this kind of support; He might also behave better towards you if he had more time away from you. I think that you also could benefit from having time and space away from him, AND from talking to a sympathetic counselor who could help you deal with your (justifiable) frustrations and angers, and who could help you devise a plan for creating a special village to help you raise your children, particularly your eldest. Believe me, I know it is not easy, but I implore you to get some really good professional help for your son and for you. Start with an IEP in your school district (call up the office and they will tell you how to get started). Please get a babysitter right away to give yourself some breathing room so that you can start moving towards getting the help you and he need! Please email with questions/for refs jerechter [at] yahoo.com
I feel for you. My son is also challenging, and impacts our lives a lot. Things that help me are humour (is your son able to laugh at himself?), getting breaks (it's worth paying for), and most of all taking care of myself. The ways I do that are exercise; getting regular bodywork that incorporates the mind as well; and a spiritual practice and community. For me that has involved meditation (James Baraz has a wonderful beginning class in Berkeley on the Spirit Rock website)and 12-step programs, which are very much about giving yourself space, letting go.
Regular time that I take care of myself has been essential, and it's so worth the effort and possible expense. Knowing my own limits, and replenishing myself. It is very hard to have a challenging child, and people with easy kids have no idea how hard it is. But there are things you can do. Antidepressants have also helped me a great deal. You may also want to consider therapy for your son with someone knowledgeable about these issues.I wish you the best anon
Sad mom, I know EXACTLY what you are experiencing: my 12-year-old daughter is obsessive-compulsive. She has been ''challenging'' literally since birth. The tantrums made me flash on ''The Exorcist''! She was uncontrollable when she'd get into a fit. NO ONE UNDERSTOOD what we were going through. My advice: if your son has OCD(verified by examination by a qualified psychiatrist) and you are not medication-aversive, run, don't walk, to a pediatric psychiatrist and try medication. My daughter was diagnosed at eight, but it wasn't until she was 10 or so that the rituals began to look like the textbook variety of OCD. Prior to that, I think the tantrums and anger (yes, she would yell and scream about how much she hated me) stemmed from her complete inability to control the things she *needed* to control.
Obviously, a child is in control of very little. We dropped out of any social life, never took her out to restaurants, didn't press for new playmates or playdates. I didn't realize just how far it had gone until her ''normal'' little brother was born, and he wasn't like her at all! I reached the breaking point last January with my daughter, after cognitive-behavioral therapy didn't work, and her rituals started to consume hours of MY time as well as hers. We got her on sertraline (brandname Zoloft) and inched up the dosage over the course of several months and ...
although it's not 100%, just imagine losing maybe 70 to 80% of the rages, the tantrums, the anger and frustration! Rather than feeling sad that she's on medication, I just think about the chemical imbalance that causes the erratic behavior and feel grateful that there's a way to give her some relief. I would love to tell you how she feels and how this affects her, but she doesn't talk about her feelings. She is grateful for the medication, and I actually LIKE being with her now that she isn't tormented by needs that she can't fulfill. I know what it feels like to just want to walk away and not look back. I can't share my name with you because I am not willing for other parents on the listserve to know my child's ''secret'' - it's hers to tell or not, and I must respect that. My heart is with you and your family. This is a painful disorder for all of you. Sad mom, too
Dear Sad Mom, I really hear you. What you're dealing with is a lot, and I just want you to know that you're doing a great job in a VERY challenging situation. Blessings to you and your family. I don't personally have experience with a special needs child with your son's challenges, but I have homeschooled and I know how much it takes even with a normally, spirited, energetic, willful and sometimes, ''full of attitude'' child! Even with a helpful partner, it sounds like you still need more support, regularly scheduled time to yourself for rest, and recouperation of your own spirit, AND some healing. I can only point you in a direction I have personally taken and you can choose whether it works for you or not. So here goes... I personally have done lots of ''spiritual healing'' work and have been a student of many modalities over the years. I now practice two forms of energy work, a couple which may be of interest for you personally, and one which may be of particular relevance for your son's' condition.
I would gently suggest you talk with David Demeray of BioGenesis. His family has a wonderful set of ''tools'' which are working very effectively for many people. The great thing is, anyone can use the tools, they're very simple and easy to use. If you speak with David or his mother Linda, I would suggest you ask them about the boy who recovered from very disabling OCD. It may give you hope and a resource, not only for healing for your son, but for your entire family. There is much assistance and guidance for all of us if we open up to it. Thank you for the courage to expose your struggle and ask for help - that is always the first step. I will post another response with David's contact info, (the website is www.BioGenesis.us), however, I don't have it with me right now. In the meantime, please feel free to call me or email me and I can get the info to you that way. Take care of yourself and thank you for your courage in sharing your struggle - you are a very patient and caring mom whose family is fortunate to have you loving them the way you do. Bless you Laura
Even with the social skill level of your child, he can learn to respect you, be responsible and fun to be with. You may wish to call Virginia Keeler-Wolf to discuss your son (510-339-9363). The other support that may help you is reading Nancy Thomas' book, WHEN LOVE IS NOT ENOUGH. She discusses in detail how to work with children who have behavioral issues. Her first instruction is: Take care of yourself! And she gives you ideas about accomplishing that. Certainly your hormones after birth may contribute to overwhelm now, more than at other times. I would encourage you to take cod liver oil or fish oil to assuage any postpartum depression. Further, breast fed babies of moms who take DHA/EPA (fish oils) have significantly higher IQs.
We began working with Virginia with our son, who also has similar issues, and the change over the past few months has been remarkable. I hope this will also work for you and your son. Been there too
I read your post and had to respond right away. I feel for you and your situation! Although I don't know what it's like from a parenting perspective, I worked with kids with autism and know how incredibly challenging-nonstop!-they can be. Despite what some claim, I do not believe that autism ever ''goes away,'' and to me it's the most challenging disability you could be faced with as a parent. Clearly you need help and support ASAP. You mentioned how much your family is able to help-or not, but I'm wondering what other sources of support you've investigated.
Were you ever involved with the Regional Center or the state program for older kids with disabilities? I'd think they could connect you with other parents facing the same issues that you could at least commiserate and share information and support with; autism has become so prevalent in CA recently that you have lots of company. It sounds like the homeschooling-having your son home 24/7-is a source of great stress. Trying to provide for all of his needs-while also taking care of your other kids-is just too much. Do you ''have'' to homeschool him? He sounds like a prime candidate for services either in a public, private or ''special'' school, paid for by your local school district. I'm also (slightly) aware of an organization called BIA that does home behavior therapy/education with kids with autism. There's also an advocacy organization-and I hope someone will write in with the name-that helps parents advocate with school systems so that the child's rights under ADA are observed and needed services are made available. You'd also be eligible for some respite care, I would imagine-someone trained who could watch your son periodically. I could see how you wouldn't have time and space to investigate these things, but please do what you can, or ask a friend to help-so that you get the kind of support and resources that will make a difference for you and your family for the long-term. Feel free to email me if I can help you track down some resources. jkh
I work with children who have autism and the behavior you describe is not uncommon. I don't think there is much you can do on your own to fix this. Do you belong to any parent support groups for families with autism? They could be a lot of help and a great resource for networking. An expensive, but pretty effective option would be to find a private behavioral consultant who could design and implement a behavior program for your family. I'm not talking about the general behavior analysis that school/regional center does but a private Nanny 911 style of program. Families who have had this done have had good success.
Unfortunately, your son will only get stronger and bigger and you need to think about keeping him safe, which is why an expensive consultation may be worth it in the long run. Good luck anon
Hi, I work with many autistic children. The frustrations you are communicating are valid. When you live with a child with special needs every day, then you understand. I had great luck with the sensory learning program to help with the rage of my own son, among many other things. If you would like some more information please just e-mail me. How your son handles his sensory input really can help shape his behavior. I wish you all the best, Take care, Bryan
Dear Mom, I am also the mother of a special needs son, and I spent several years trying different private schools and homeschooling before I gave up, moved to a good school district and put my son in public school where he received a ton of services. The extra support took the strain off our relationship and he has improved immeasurably. Even if you don't take this route, you are eligible for services through Regional Center (like respite care, which it sounds like you could certainly use). Having an autistic child is too stressful to manage alone and autism is responsive to intervention. You say you come from a family that is dysfunctional, and your isolation-- trying to go it alone--can be a symptom and a perpetuation of that dysfunction. Please get the help you all need. Glad I Surrendered
Hi, I have a toddler in a home based day care. The day care consists of mainly infants with a couple of toddlers and one elderly adult assistant (along with the main provider). There are 7 full timers and one part timer (two of her schoolage kids come home halfway through the day). Last week she had a 9 year old autistic child ''drop in'' for two days. This week he has joined the day care. There has been no open discussion. The child does not speak and loves to go outside (will bolt for a door if he sees the opportunity, pushing out of the way).
I am a compassionate person and all for inclusion, but am concerned about the age difference and mimicking behavior inappropriately. I am also concerned that my provider and the assistant are not adequately trained to manage this situation (especially in the event of an ''episode''). I questioned her and was told that the child ''doesn't hurt anyone.'' That was not what I asked her when I got that answer!
I have a very dear friend that has a masters in special needs and her opinion (based on her specialized training) is that it is completely inappropriate for a 9 yr old with special needs to be around toddlers. Aside from the toddlers mimicking him, the 9 year old will mimick the toddlers. It's one thing when a two year old mimicks another two year old hitting, scratching, pulling, but when a 9 year old mimicks a two year old hitting, scratching, pulling, someone can get very hurt.
I am trying to discuss this with my provider but feel like my attempts to openly communicate are not being honored......
one mother has already abruptly removed her child! I am already looking for alternates....
any advice, would be highly appreciated...... anon
I am the mother of a seven year-old autistic boy and a teacher. There isn't a simple answer to your question about whether it is appropriate for an autistic child to be included in a home day care with toddlers. It would depend upon the child's behavior, the attitude and number of the adults providing the care, and the attitude of the other parents and children at the center. Licencing laws for the home day care require that the provider make resonable accomodations for a disabled child. Assuming that the autistic child is comming to her after school, and the the provider has school aged children of her own, he is with his peers in the day care enviornment. If the autistic boy isn't in school, that's a whole different matter out of the scope of this newsletter.
With due respect to your friend who is an expert on special needs children, no two autistic children are alike, just as two typically developing children are alike, so her judgement that an autistic child should never be included with young children is too simplistic. Many professionals in child development and education have little if no training about developmental disablities. Teachers training is about typically developing children, unless the teacher is aquiring a supplemental special education credential. I have had to explain my child's discrete-trial training at school a pediatrician.
Autism is a spectrum disorder. If a child has enough characterstics that indicate the disorder a diagnosis can be made, but all autistic children do not behave identically, since they won't share identical characteristics. For example, autistic child may be very ritualistic, while another may only be slightly so. The stereotypical autistic kid who bangs his head or flaps his arms all day is just that - a stereotype - they're all different.
Aggressive behavior would be a reason that the child might not be a good fit for this daycare. Many people believe autistic children are always aggressive. My son is extremely passive and has never shown aggression toward anyone. As a toddler he just seemed like a passive, shy boy. As far as the possibility of the autistic child immitating two and three year-olds aggression in day care, I wouldn't worry, most austic children don't immitate other children. Their aggression is a symptom of their frustrated attempts at communication.
Bolting is another reason the daycare enviornment may not be appropriate if the provider cannot provide for the safety of the autistic child and her other children. When you ask her about this behavior, ask specific questions, ''What action will you take if ''Billy'' escapes? How will you supervise the other children if you need to go retrieve him?'', ''How often does he escape?'' ''Does he stop when told to?'' She probably answered your question with ''he doesn't hurt anyone'' because that is what she thinks you're concerned about aggression. The provider also probably felt defensive both of herself and of the autistic child, since a parent abruptly pulled their child from her care. It's an answer people often give when people are concerned about wierd, but otherwise harmless common behaviors of autistic people, like hand flapping, ordering toys, making odd noises, ect. A lot of people, even if they don't admit it, just don't want to be around people who behave differently, even when the behavior isn't harmful.
If you're concerned about the provider's training, again ask her specific questions, such as ''How do you communicate with Billy?''. ''Does Billy respond to your commands?''. ''How does he communicate his needs to you?'' While teaching an autistic child requires a lot of apecialized training, providing care for a few hours after school would not. Many non-verbal children are taught to communicate using picture cards, so if he brings her a card with a picture of a toilet on it, she would know, with or without a lot of training, that meant he needed to use the toilet.
I hope you can open up better communication with your daycare provider. I think being specific in your questions will help. With the increase in the numbers of children being diagnosed with autism, we will need more people who are open to caring for them, and we will all need to be tolerant of their differences. anon
I'm the parent of an autistic child. If you trusted your daycare provider to care for your child before the austistic child arrived, then you can continue to do so. Your typical child will mimic the majority of typical children and will easily learn to distinguish appropriate from inappropriate behaviors - just as any typical child amongst other typical children will do under appropriate supervision. The typical children in my childs school are happy, well adjusted kids. There's a 3:1 ratio of typical to autistic kids in this school. The kids start at the age of 18 months and go up to the size and chronological age of 6 or seven. From what I've seen, these typical kids are also learning to be more accepting, helpful, and less judgemental than many young kids can be. As for whether it's approriate for the 9 yr old to be there with toddlers...that's a matter for his/her parents and the daycare staff to determine. Yes, it would probably be better for the autistic child to be around somewhat older typical children. However, this might currently be the safest, most loving, practical situation that the parents have found so far. Is the level of ''teaching'' and activities appropriate for this child? If you want to get involved in this child's life to ensure that he/she is getting what's appropriate, as you might a blind child or one with cerebral palsy, - that's great. However, unless this child has a serious aggression problem apart from his/her autism, then the child's presence should be a non issue for you. anon
I'm the mother of an autistic son who is now 14 years old. He has a twin sister who is normal. We've been through all of what you mention, and then some. Please do not be terrified. Diagnoses will change and often experts disagree. The autistic spectrum of disorders is enormous and the words wind up meaning very little. The best advice I ever got was from our son's first speech therapist who said to me, Don't worry about the labels. Just do what works. VERY good for directing the heart and the energies. Whatever the problem is, or wherever she fits on the spectrum, autism is not a death sentence. The progress can be astonishing, but it sometimes happens so slowly (until we look back at it with perspective) that it evades us. (Watch any child's development in real time.)
Do not put all your faith in any particular diagnostician's opinion. Put your faith in your daughter and yourself and your husband. But DO proceed quickly. Early interventions are the best, and the sooner you are aware of the possibilities and her individual needs, the better for her and for you.
I, too, had all those fears and questions, all those unknowns, all that terror and waiting for appointments that you are experiencing. But now, I've got some hindsight. I longed for someone to talk to, some other similar children to observe, any one who could tell me what was happening to us all. Please do feel free to contact me. I would be happy to talk to you, for however long, and give you whatever benefit there is of our own references, stories, experiences, etc.