April 15, 2021
Big Shot
On Monday, my husband, Justin, and I had an experience that I can only describe as the equivalent of what passes for a spa day during Covid.
No, it wasn’t an elegant meal, or a show. It was simply a teenaged boy getting his first vaccination in Atlantic City.
And it was fabulous.
My son Justin is almost 18 (!) years old, and is non-verbal and severely autistic. He is absolutely amazing with the medical community at large, patiently sitting through vaccines and blood draws, even overnight EEGs with aplomb. When we scheduled his appointment after my husband and I had had our shots and been impressed with how well-run the entire operation was, I wasn’t actually worried about how he’d handle the shot itself. I was more concerned as to how he’d handle waiting at the various checkpoints; if he’d see something that interested him in the large room where vaccines were dispensed and that he’d make a run for it; how I’d handle him alone if they only allowed one person in with him; and how on earth I’d contain him for fifteen minutes afterwards on a folding chair.
It turns out I kvetched for nothing.
While Justin is non-verbal, with his tic disorder, he is really, really loud. After we parked our car we headed over to the entrance and saw a long, albeit spaced-out line to get into the facility, and my husband and I girded our loins. As we approached, each with a hand on one of Justin’s arms, we got to about ten feet away from the entrance and a lovely man in a national guard uniform made eye contact with us and waved us over to him at the front of the line. We walked over with no idea what he would say, figuring we’d have to choose who would accompany him, and he simply said “Come with me,” while moving the barrier for us to get through.
The merest trickle of elation began to course through me.
We followed our vaccine angel past two checkpoints (got the side-eye from one woman but it failed to phase me), and after giving his information quickly at the third were escorted up the elevator, and I figured we were about to enter the massive room where me and my husband had received our shots.
Happily, I was totally wrong.
Instead we were ushered into a large tent strewn with comfy chairs, sensory toys, and a psychedelic light I knew would capture Justin’s attention. Our personal national guard stepped out and a new one came in, telling us the nurse would be in to see to us shortly.
Yes, our own personal nurse.
Within a minute or two she came in and told us right off the bat that she and her co-workers who were working this shift all had experience with autistic patients, and not to worry. She asked the requisite questions about his health, and then asked if we needed more guards to help him get his shot, and if I were comfortable with that. I knew if we could get Justin to sit down, which we did, he’d comply beautifully (clutching one of the sensory toys as if it was a newfound friend).
It was all over in five minutes.
He didn’t get too antsy during the fifteen minute wait, and it gave us time to talk to our lovely escort and nurse. She told us to just ask for the sensory room when we came back in three weeks, and we would get the same treatment. Very quickly our waiting time was up, and we gathered our things, managed to pry a sensory toy out of Justin’s eager hands so it would be there for the next child, and left our personal tent.
The entire experience from parking to exiting was concluded in under half an hour.
If we’d had to wait like my husband and I did, do I think Justin could have handled it? Yes, I do. The fifteen minute wait would have been dicey, but I’d brought some favorite toys with me and I think I could have pulled it off. However, was it nirvana not to have to worry about any of it? Absolutely. It was amazing to know that our second trip back would be the same, that helping our son not to get sick and to stay alive would not be stressful in the least. To be honest with you I almost had tears in my eyes when they led us to that tent, and I’m really only a “This is Us” crier these days.
I teared up because autism is hard. Severe autism is really, really hard. I got emotional because for once, finally, the playing field was leveled and my son had the experience he needed, not the one the other 98% of the population needed to get vaccinated. I felt my eyes well up because some unknown individuals had planned this, had gotten it, had understood our lives.
It felt amazing. And I wish this happened all the time- and I don’t mean that my son would get special treatment. It would just be incredible if the world around him could accommodate to him once in a while, instead of it always being the other way around.
We head back to Atlantic City (the other bonus is, it brings back fun childless days to me and Jeff) in three weeks, and this time I won’t be headed down with any expectations other than non-stressful success.
It will definitely be another Covid spa-day equivalent.
And I am so eternally grateful to the powers that be for coming up with this.
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April 2, 2021
World Autism Day
And yet again, it’s World Autism Awareness Day.
I’ve written many different types of posts surrounding this event over the years. Some posts have focused on the progress made by my kids. Others have centered on the community at large, and the strides we need to take to have more acceptance of each other. Some have just been a plea for better acceptance of autistic people in general.
But this year I’m going to follow up on commentary I’ve seen in the community questioning the title of this day, specifically on the National Council on Severe Autism Facebook page. A suggestion was made that we, instead, need to call this Autism Action Day.
And I couldn’t agree more.
Of course, we still need acceptance and awareness always. Just in my own town in the burbs of Jersey I have seen so much more acceptance of my son over the fifteen years we’ve lived here, mostly by people out in the community. It has been so gratifying to witness more smiles than stares when we go out, and while I’ve really become immune to the latter, it is still great to see that kindness radiating from people we don’t even know.
But Justin is getting older, will be a ripe old eighteen years old in a matter of weeks. In three years his beloved school will no longer be an option for him. The “cliff,” that reference to the cessation of services for autistic individuals after the age of twenty-one fast approaches. I will tell you that I am planning and plotting already, have formed a group of women who along with myself are dedicated to creating a great life for our sons beyond twenty-one. I know I need to take action for this dream to come true.
He deserves to have a great life too, one on his own terms.
There is so much contention in the autism community, and I fear that we are getting bogged down in arguments over whether or not parents are ableist, whether high-functioning autistics know better than parents what’s best for their severely autistic brethren. I read arguments between autistics and neurotypical parents, and yet to date I’ve haven’t seen one mind changed, one perspective altered. And while we all need to voice our opinions, I believe it’s time to focus our emphasis on action, not words.
There needs to be better day programs for our autistic adults.
With 500,000 autistic children becoming autistic adults in the next decade we need safe, affordable housing for them all.
We need meaningful employment for those who can work.
We need better trained and better paid caretakers for our children.
All of these things and more will require action- laws to be passed, work to be done to achieve our goals.
It’s time for all of us to do whatever we can, to take action to bring about these dreams. I know I’ll be doing my own small part, not only on World Autism Awareness Day, but until my son’s dying breath.
I vote for a change to World Autism Action Day, and I plan to live up to it.
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March 10, 2021
The Light at the End of the tunnel
I’m beginning to see a light at the end of the tunnel.
This past week we got the welcome news that our youngest will be going back to school four half days a week, and our eldest will be returning to full days, eventually four days per week. I am especially thrilled for our firstborn, as it is so apparent that he is bored out of his mind in our home, and is always happiest on in-person school days.
To be perfectly honest, I am always happiest on in-person school days.
I know there’s a risk of sending them back more, and I would feel more confident knowing they were vaccinated, but it will be a while until my kids are eligible for that, hopefully before the start of the next school year. My husband and I have had to weigh the benefits versus the risks, and as both of the kids’ schools have taken excellent precautions, we feel it’s worth it to give them some sense of normalcy.
We could all use a sense of normalcy.
As we embark on this next phase of their schooling I just hope they stay safe. It’s so difficult to strike the balance between caution and social interaction. I know both boys have suffered from the lack of the latter this past year (can’t believe it’s been an entire year already!). I know their parents have suffered too. As the good weather returns hopefully we’ll all have the chance for a little more “normal”- I know just getting them to the beach and to our pool last summer helped immeasurably.
Trust me, I am so envious of my Florida friends it’s painful.
We’ve been really lucky this past year with Justin, our severely autistic teenager. He really adapted quickly with very few meltdowns over his restricted life- I was so impressed how he took to wearing masks so quickly and easily. I also know that many other families in our position have not been so lucky. I have friends whose children have been very unhappy with their changed circumstances and have let their families know in no uncertain terms. I can explain to Justin why he can’t go anywhere, but I have no idea how much he understands of what I tell him, and honestly, even if he did understand I don’t think it would affect his behavior all that much. Some autistic kids and adults have really struggled this past year, and I truly feel for all families who have been in this situation.
We’ve all been there at one point or another.
For all the families out there still struggling, hang in there, I believe some respite is around the corner. You’ve all done an amazing job in difficult circumstances for a year, and hopefully some of the stress is going to alleviate itself soon. Try to take care of yourselves as best you can, and ask for help whenever possible.
And remember to look for that light.
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February 10, 2021
We’ve Got This
He eagerly stands by the door as I assure him his bus has come, and my lanky seventeen-year-old with severe autism bounds across the threshold to his waiting ride. I think he’s been at school three days in the last three weeks, due to his school closing for Covid and some inclement weather. He doesn’t smile nearly as much now as he did before he developed tic disorder four years ago (or perhaps it’s because he’s a teenager and doesn’t smile that much anyway), but he’s vocally stimming and steps right up into the bus, so I have to believe he’s happy to go.
As much as I love him, he needs this and I do too.
It will be a year next month that Justin’s school schedule will have been radically altered, and I have to say we are in a better place now than we were eleven months ago. For five out of the six first months of Covid, Justin was home with me being his teacher, both instructing him and doing Zoom calls with his teachers. The home instruction went and is going pretty well, as I still do it with him once or twice a week. The Zoom calls, not so well, and we have chosen not to participate in them as he isn’t getting anything out of them. He is an in-person instruction type of guy.
And as a former teacher who can’t even imagine doing virtual instruction, I so get it.
Justin can’t talk, and really only uses his iPad in school for academics and to communicate his basic needs, so most of the time we have to guess what he’s feeling. He really has had limited behaviors since all this struck, for which I am eternally grateful, but it’s difficult not to know what he’s thinking. I tell him every morning whether or not he has “home school” or “in-person school,” but I never know whether or not he understands, or how he feels. I know ten years ago he would have been throwing his sneakers at me to take him somewhere every day- he’s matured, and seems to get that right now, there’s nowhere to go.
I am truly grateful that he seems to get it.
Only once has he really asked to go anywhere, and that was when he threw the Jenks boardwalk tickets in my lap and stood there expectantly, waiting for me to tell him we could go. I told him it was closed and he seemed okay with it, walking over to one of his toys and engaging in play.
Trust me, I would have loved to have taken him.
I’d like to think we’re in the home stretch now, and soon a more normal life will resume. I have a feeling both of my boys will emerge from this relatively unscathed, but at this point it’s difficult to know. I do know that there are other families with autistic children who are not faring nearly as well, and my heart goes out to them.
All I can say to all of us, is hang in there, we’ve got this.
And as I see my boy take his seat on the bus, I’m grateful he’s done so well so far.
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January 22, 2021
Guardianship
In just a few short months my eldest son, who is severely autistic, will turn eighteen.
I’m having trouble wrapping my head around this, that I will be a parent to someone who is an adult.
Because he is severely autistic my husband and I began the guardianship process this week with our lawyer. We felt ourselves to be pretty well-informed, and even so, it was daunting. In the next few months in addition to applying for guardianship, which allows us to make important life decisions for Justin after he turns eighteen, we will also apply for SSI, Medicaid, and begin the application process for the DDD, the entity from which he will receive services after he turns twenty-one.
The years turning eighteen and twenty-one are critical in the disability world for many young adults. Jeff and I want to make sure we do everything right, and the lists of what to do are long. That part is a bit overwhelming, but also thinking about Justin’s future is overwhelming too. We’ve been told we’ll be old enough to get him on the list for residential care next year, and that the waiting list for a residential budget is about twelve years, which puts us pushing seventy when he will probably go into residential care. We’re nowhere near ready for him to leave us so that is fine, and frankly it’s difficult to think about all the decisions that will have to be made to make that shift.
I just want him to have a good life even after we’re gone.
I’m hopeful we can come up with something that works for Justin. I have several friends with adult children older than my boy, and I’m sure I’ll learn a lot from them as they make these choices. I’m hopeful there will be good options as we’re probably going to continue to reside in the Garden State, and since there’s so many autistic people here I figure good residential options will continue to be created to meet the demand.
I’d like him to be somewhere where he’s safe, and happy. I hope he has a day program he enjoys, and lives close enough to us that we can continue to take him to the beach, Great Adventure, and the boardwalks that he loves. We worked so hard to give him activities and leisure skills that he likes, and I don’t want him to lose those opportunities.
So as we dive into this next chapter of his life I remind myself that we need to take this one hurdle at a time, and we have people who can help us. Back in the day when Justin was really difficult I tried to tackle each issue separately so as to not get overwhelmed, and we need to remember to do this now.
I’m taking a deep breth a I plunge into phone calls, forms and paperwork. I have hope that it will all turn out well.
It has to, because he deserves that.
And I have faith that it will.
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January 7, 2021
This Too Shall Pass
When Covid first began nine long months ago, I remember thinking about what impact this disease would have on the autism community. My kids were 13 and almost 17 when it began, my oldest being severely autistic and non-verbal. I recall thanking my stars that this pandemic had not taken place years ago when Justin, my eldest was younger. Back in the day he would throw his shoes at me every single day so I would take him someplace. It didn’t matter if it was a holiday or a raging snowstorm, he wanted to go out.
With age he has mellowed considerably, and he has taken his semi and full quarantines in stride. I’ve even been able to get him out for walks around the neighborhood which I hadn’t tried in years, which is good for both son and mama. Overall he has done really well during Covid- the only time I’ve known he was missing something was when he thrust Jenks boardwalk tickets into my hands and looked at me like “Woman, why don’t we go there anymore?” He has handled everything as well as can be expected, and so has my other son.
I think things are beginning to wear a little thin now however.
The few times I’ve had to take him to an in-person doctor’s appointment his enthusiasm knew no bounds. I felt kind of guilty not going anywhere fun, but he seemed okay with the excursion.
Maybe, after all, it’s just his mama who’s over all of it.
While my family has been lucky with the way my kids have handled the pandemic, I am certain there are other autistic families in the community who have not been as fortunate. I have friends with kids on the spectrum who not only love traditions around the holidays but have been quite vocal about wanting to continue them, even if they aren’t allowed to at this point. A few of my friends just had to quarantine their kids for two weeks, which basically means with winter break their kids are home for a month. Explaining why to an autistic child does not always translate well. It can be very stressful having any change in routine or any omission of a favored tradition.
I just want families to know many people are going through this- you are not alone.
I hope some relief is on the horizon, although four to six months seems like a long time away particularly with the next four months or so being winter. I hope all of you are coping as well as possible, and that somehow you’re able to carve out a little time for yourselves if you don’t have your kids home 24/7.
As my grandma would always say, “this too shall pass.”
And my wish for all of us is that it passes very soon.
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December 21, 2020
The Other Side
He draped his entire body over mine, my severely autistic teenaged boy. We were getting dressed and ready for in-person school which he loves, and he suddenly looked me in the eyes, gave me his half-grin, and pulled me close. He is inches taller than me now so has to lean over to hug me, but we make it work. After a few minutes we had to disengage to greet the day, and the moment was gone.
Gone, but not forgotten.
Three years ago when Justin was fourteen if you had told me he would once again bestow spontaneous hugs on me I would not have believed it. From age fourteen to fifteen we were immersed in a hellish world with him, with behavior that merited diagnoses ranging from dystonia to catatonia and beyond, multiple doctors visits in a myriad of states, and the complete absence of my son’s personality that we all loved. It was a year devoid of joy, which took its toll on me and my husband, but mostly on Justin himself.
Fortunately, we got the correct diagnosis of tic disorder, put him on the right medication, and much of what plagued him was eliminated.
I can’t tell you how many times in the past ten years or so I’ve had people tell me that fourteen has been the witching year for their moderate to severely autistic child. Puberty seems to wreak havoc on them, and co-morbid disorders that have been lurking in the recesses of their brains seem to rear their ugly heads. What got me and my husband through this was hearing time and time again from friends and acquaintances with older kids was that their children eventually came through the other side.
With time, they got them back.
Justin’s personality changed with this latest diagnosis, although it has been suggested to me that part of the changes can be chalked up to being a teenager, which I can’t argue with. I am thrilled to say that three years later most of the movement disorders that plagued him have disappeared, and his tic disorder does not seem to interfere with his life very much. His capacity for joy, although appearing to be somewhat diminished from my smiley younger son, has returned to a degree. He still reaches out for that contact on occasion, those hugs he still seems to need, much to his mother’s happiness. Sometimes he just turns to me and plants a big kiss on me for no reason, to my delight.
So, I just want to say this to any parent with an autistic child approaching puberty. Be prepared for changes both emotionally and behaviorally. If things go south, if progress made is erased, don’t give up. So many families have been there before you, and things have eventually improved. Keep hope alive, take care of yourselves in the meantime, and remember this.
Your child can come out the other side.
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December 7, 2020
The Weight of Worry
It was just another day, nothing special. I was six months in to being my then almost two-year-old’s primary ABA therapist in our home in Virginia, and my son was being his usual receptive self, eager to work for his spinny toys. We had just finished working and I was preparing to take him on a much needed walk when a wave of fatigue hit me that had nothing to do with my prior night’s sleep. Suddenly, I just really needed to sit down, which was not something I did a great deal of in those days.
I sank into our sofa, watched as Justin played eagerly with his new toy, and realized I needed much more than a walk for a break.
My eldest son Justin was diagnosed at seventeen months with autism, a very tender age for a diagnosis back in 2004. Unfortunately my adopted state of Virginia did not recognize an autism diagnosis at that time in terms of dispensing therapies, so no Applied Behavioral Analysis (ABA) was offered to us. At that point we contacted a local ABA agency, got myself and two therapists trained, and began working with him. The two therapists came in for a total of five hours weekly, and I did another thirty to thirty-five hours with my toddler.
To say I was exhausted was an understatement.
Honestly, the fatigue ran far deeper than multiple hours of therapy daily and somewhat fractured sleep. I was exhausted from how difficult my lovely boy could sometimes be, from anything to eating to sleeping to simply leaving the house. I was worn out from the worry, the wondering if he would ever talk, handle school, be independent one day. The weight of the future weighed heavily on me every moment.
And I knew something had to give, or I could no longer continue to give my best self to my boy.
I couldn’t speed up time and get him into full-time school to give me some much needed respite, so I knew I needed to look for other options. I also knew that my husband and I needed some time together too, and fast. I realized I needed to let go of some of my fears, find a sitter once a week, and start taking my mom up on her offers to watch her grandson when she came to visit every month-and-a-half or so.
I finally let people help us, and it was exactly what I needed.
I found a sitter who could come in once a week during the day for a few hours, and I ran errands or sometimes just went to the mall and sat with a hot chocolate and read in their bookstore. When my mom came down to visit we started taking her up on her offers to let us do dinner and a movie, and we began letting her. We eventually even found a sitter with whom we felt comfortable letting her put Justin down at night, and we were able to finally go out with another couple, even if it was brief.
These outings saved my sanity, and probably my marriage.
If your son or daughter has just been diagnosed with autism I’m sure going out to dinner is the last thing on your mind. You may be embroiled in arranging Early Intervention providers, or beginning the myriad of assessments to get your child admitted to a special education program in your district. You may be trying to figure out insurance, special diets, or trying to find an appropriate social skills group.
In short, you’re probably exhausted too.
When the absolutely critical things have been achieved, make yourself a promise. Carve out some time for yourself. Make sure your spouse does the same. Take up some of those offers to babysit, and if no one is offering, ask. Get out with your partner or spouse. Try not to spend the entire evening talking about autism if you can. And I know, that’s a tough one.
Try your best to take care of yourself and your relationship, because those are two of the best ways to help your child.
Try, if you can for a few hours, to let go of the weight of worry.
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November 23, 2020
Keep an Open Mind
I suppose this is an anniversary of sorts- sixteen years ago this fall my eldest son was diagnosed with autism at eighteen months of age. It didn’t really come as a surprise- I had been concerned about his development going on a year, and the kindly developmental pediatrician who gave him the autism label only confirmed my suspicions about his divergent behavior. While I knew in my heart what he had, I had no idea how many challenges me and my husband would have to face, and how many difficult decisions we would have to make.
I will tell you this now- one of the best ones I made was to keep an open mind.
I didn’t come to this viewpoint right away. I quickly formed some very strong opinions regarding my son. I had read that autistic children who used sign language had a greater chance of talking later on, and I desperately wanted that for my son. I can remember making my case with his New Jersey Early Intervention team, and finally getting my wakeup call when his excellent therapists pointed out that he had minimal imitative skills and had mastered only a few signs over a long period of time. Fortunately I listened, and he moved on to the PECS system and eventually to an iPad, which he uses to communicate successfully every day. Apraxia has kept my son non-verbal- all the signing in the world would not have facilitated that type of communication.
Fortunately, I listened to the experts, not my heart.
Another strong opinion I had was that I wanted my son in a public school, so that he could have interactions with mainstream peers. When he was little he did interact with his more typical peers, but that desire dissipated as he grew older, and his needs outstripped what his local public school could offer him. His father and I were able to consider a private autism school when he was finishing first grade, and it remains today the single best thing we have ever done for our son. Had someone told me I’d be advocating for that when he was first diagnosed I would have rejected the concept soundly, but fortunately I listened to the experts once again who knew my child and his future needs, and we were able to make the right choice for his education.
None of these decisions was easy, trust me.
The truth is one of the single most important things I’ve been able to do for my son is keep an open mind regarding so many things that have affected his life- how he’s educated, medication usage, his manner of communication, etc. When your child is first diagnosed it can be so overwhelming- figuring out insurance coverage, Early Intervention or the process to get him or her into the school system, getting your child to eat, sleep, or simply just be happy.
So take one thing off your plate- don’t feel that any decision you make has to be made in stone, and make them one at a time. Be open to the opinions of those who know your child, and try to be flexible when considering what can best help him or her.
Do your best to keep an open mind.
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November 9, 2020
Make Friends with Parents with Autistic Children
Sixteen years ago this fall my family and I entered the world of autism through our son’s diagnosis at seventeen months of age. I remember being so overwhelmed with my new “to-do” list; diets, Early Intervention, ABA, sensory issues, sleep (or lack thereof) disturbances, eating problems, etc. It was difficult to know where to begin.
The truth is all of my personal needs went on hold for, well, years, but there was one need I did pursue, and I am grateful to this day I have always made time for this endeavor.
And that, my readers, is making friends with other autism parents.
I have dear friends from all walks of my life- high school, college, work, and the ones I inherited from my husband who became my own. They are all wonderful and supportive people, and I do often talk to them about the challenges of raising my severely autistic son. They get it to a degree, as much as a person can who is not walking in my family’s shoes. I am fortunate to have these outlets, and have had these people stick by me especially during the years I was so enmeshed in autism I didn’t have much time for friendship. I value them all.
But at the end of the day, sometimes you just need a friend who gets that when you say your son hasn’t slept for three nights what you’re really saying is that you’re afraid he’ll never sleep again. And you need that friend to talk you down from the ledge.
I have had the great fortune to make a number of “autism friends” over the years. I have two children on the spectrum, one mild and one not, and to be honest I’ve found I needed to bond with moms and dads who were raising both types of autism in order to find the sounding boards I needed. I’ve found their two types of autism to be so different there is almost no commonality- subsequently it was important to me to befriend people who had similar experiences to the ones I was having with both of my kids.
I want to share with you now that along with exercising and chocolate (I know, they shouldn’t mix well but they do) having people to vent to and ask questions of has saved my sanity numerous times over the years. The connections I’ve made have been invaluable, and here’s how I’ve made them. As an aside, all of these opportunities were pre-Covid of course, but hopefully will be again available soon!
1. When your child enters school, see if you can make contact with other parents in your child’s classroom. One of the best ways I did this was attending every little performance they did and chatting with the moms before and afterwards. If your child’s teacher does not offer opportunities to come to school I would suggest asking him or her if you can send notes home through each child’s backpack. I know it’s awkward to approach someone you don’t know, but some people will love that opportunity and be thrilled to reciprocate. One of my closest autism friends is my son’s preschool classmate, and they are friends to this day. Playdates can be a wonderful offshoot, don’t forget to include that request!
2. If your school has any type of special education PTA, beg borrow or steal a babysitter and get yourself there. Not only do they usually have very pertinent topics discussed at these meetings, but it’s usually a wonderful environment to meet people. Many will be a bit further along in autism world than you, and can be invaluable resources. Sometimes staff from your child’s school will attend and it’s a great opportunity to meet them in a more relaxed setting than across the table from each other at an IEP meeting. I attended my son’s district special education PTA meetings, and learned invaluable information that really helped me make decisions down the road.
3. If there is a local autism organization in your area, join! I live on the Jersey shore, and we are so fortunate to have POAC Autism services in our backyard. They run parent support groups which are wonderful ways to meet other parents, and dozens of fun events for families which are also a mecca for meeting people. Attending these events will also get both you and your child out, and start acclimating them to being in public, which is so important. I met one of my dearest friends through a support group.
4. Last, if you can swing it (and you get a day or night out too!) participate in some local charity events. We met a wonderful couple through a charity gala, the wife of whom I friends with ten years later. This checks two boxes- meeting people and having fun which is equally important to your sanity!
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