Parenting a Child on the Autism Spectrum

• Managing stress: pregnant and have an autistic toddler
• Inclusion in regular day care with Autistic child

Managing stress: pregnant and have an autistic toddler

Feb 2012

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

Inclusion in regular day care with Autistic child

December 2004

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.