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| Me, my husband, autistic son (age 5) and daughter (age 2) in 2005 |
I ended up not using half of these notes in my interview, as I really wanted to focus more on telling my story about my son, and not get too "preachy" giving advice about our successful marriage! However, I still think these tips and tricks are potentially helpful for other parents of children with autism, which is why I'm sharing it here.
My friend Emily particularly wanted to focus on parents who have a successful marriage or partnership, and how important that is for raising a child with autism. It might not help those who are already stuck in a miserable marriage or partnership, but it might help those who are on the brink of marriage or partnership, and thinking about raising children... The second section focuses more on tips for dealing with your child... The main goal anyway is to help or inspire others, by sharing my story...
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| Me, my husband, autistic son (age 24) and daughter (age 21), 2024 |
Marriage Success and Raising a Child with Autism
The real fundamental secret of “my” success is having a husband who has always supported me 100% and halved the burden of dealing with my autistic son, by being a totally equal partner. I couldn't have gotten through all the stress and coped with it all half as well as I did without him by my side, working with me. We were always a team.
This has been one difference that I've sometimes encountered when trying to help people. I do realize that the reality is that many people are struggling with special needs kids on their own, as single parents. The divorce rate for couples with an autistic child is a shocking 80%! The stress of dealing with a child with autism often causes marriages to break down.
Having a loving, happy, committed marriage and partnership before our son was born, provided us with a strong foundation for tackling all the difficult, stressful & exhausting situations we found ourselves in, as we raised our son, through childhood and teenage-hood. Although we did suffer a LOT of stress and exhaustion, we always tackled it together as a team. "A burden shared is a burden halved", they say. And it's true.
I realize that having a loving, happy partnership is partly a matter of luck, in finding the right person. But, as long as there's genuine love there, in the first place, the rest of it is the result of complete dedication and equal commitment to the partnership from both people.
Tips from our successful marriage
1. Know for sure, before you get married, that you want to be married and want to raise a family.
Even though my husband and I were both quite young when we met and started dating (I was 21, he was 23), we both knew that we wanted to get married and raise a family, and we were both looking forward to having a long-term committed partnership.
2. Get to know your partner really well before you commit to getting married. Try letter writing. (Even if you don’t have a long-distance relationship like we did).
Because of our circumstances before we were married, my husband (then boyfriend) and I were forced to have a 3 year long distance relationship between England the US to start with! We met up with each other for several weeks at a time, but then had to have months apart! During our time apart, we wrote emails to each other every day. (And this was back in the early 1990s when not many people had email!) We had no cell phones, so no way of having video chats, or even calls. Regular phone calls were $1 a minute!! So we wrote emails every day. We shared our every day lives and inner most thoughts. And because of this, we got to know each other really well! The fact that we survived this 3 year long distance relationship (which was quite stressful at times), and got to know each other deeply through letter-writing, built a really strong foundation for our eventual marriage.
3. If possible, don’t have kids straight away. Allow a few years to just enjoy marriage with your partner, without the burden of kids.
It was a good thing for us that, once we were married and settled in the US, we then had 4 years of marriage together, in Chicago, just enjoying life and having fun together, BEFORE having children. This also built a really strong foundation for our relationship, before we had to tackle the stress and exhaustion of having children.
4. Do fun things together with your partner: go out on fun dates, participate together in shared hobbies, activities, games, sports, clubs, etc.
They say, "couples who play together stay together" and it's true. Even after our first child was born, and even though he turned out to have autism, my husband and I didn't stop having fun together. We made sure to find babysitters so we could have time off and just go out and enjoy dates together. We also sang together in a choir which involved regular rehearsals and a lot of planning and organizing together. We also hosted dinner parties together, and hosted “game nights” with our friends playing board games, etc. We also went to concerts, plays, movies and shows together regularly.
Sometimes, finding babysitters when you have an autistic child can be very hard, if not impossible. This did become increasingly hard, the older our son got and the more difficult he became... There were times when we couldn't leave him, and couldn't take a break. Our relationship was certainly put to the test during those difficult times. But we did everything we could to take breaks from him, so that we could maintain our commitment and partnership.
5. Seek couples counseling and/or therapy, if you’re having difficulty communicating with your partner.
Try to address problems with your communication, your sex life, your general daily life. Are you both on the same page with the important things? Are you both wanting the same things? Are you both satisfied with your sex life and other important aspects of your marriage? If not, there’s no shame in seeking some professional help, to sort things out.
6. Seek individual therapy too.
Especially if you know you are suffering from depression and/or anxiety, or if you’re just not functioning as well as you could be. There’s no shame in admitting to depression or anxiety, and no shame in seeking some professional help! Commit to working on yourself, so that you can be a better partner for your partner! You deserve help to be better functioning. And, you also owe it to your partner to seek help from a professional and not rely 100% on your partner.
Tips from our successful upbringing of our son
1. Tag team with your partner. Allow one of you to take a complete break, while the other looks after your child.
In addition to hiring babysitters whenever possible (see #5 above), we were committed to giving each other breaks too, whenever possible. We would share the burden of looking after our son by letting each other take a complete break, even if just for an hour or so. One of us would leave the house completely and go somewhere else to get away (whether it was just going out for a walk, or going for a drive, or going shopping, or going to have a massage, etc!) The other would stay home alone and deal with our child, even if he was having a melt down. This tag-teaming is essential to relieve the burden on each person, and instills a huge feeling of gratitude in each person. It also allows each individual person to see what it’s really like being alone with this child, to instill better understanding for the other partner, (if the other partner is more often alone with the child).
2. Seek professional help/ therapy FOR dealing with your child, not just for addressing your marriage issues.
Working on your marriage first is extremely important (see #6 above). But then, it’s also important to see a therapist together, to work on dealing with your special needs child. My husband and I had frequent sessions together with our family psychologist. This was also our son’s psychologist, who first diagnosed our son’s autism when he was age 3. She was an amazing child and family psychologist. She not only saw our son frequently, on his own, but she also saw my husband and I on a regular basis too, sometimes individually, and sometimes together, as a couple.
Those sessions were really helpful for us, to realize that we were both under severe stress, and to therefore not blame ourselves or each other, for some of the difficulties we were facing. Blame and guilt are two very damaging things that many couples suffer from, especially couples dealing with a demanding special needs child. Our family psychologist helped us overcome our feelings of blame and guilt, and helped us to keep focusing on supporting each other.
3. Get tips from your professional therapist on dealing with your child.
In addition to helping us overcome our feelings of blame and guilt, and helping us to support each other, our family psychologist also gave us many tools and tips specifically FOR dealing with our son. She got to know him individually in her sessions with him. And then she was able to advise us, and prescribe certain ideas, tools and tips for helping him stay regulated, calm and disciplined. Some of these tips were things we could have read in a book, but some of them were tailor made ideas specifically for our unique son! (Examples were all to do with keeping him regulated and calm, such as providing strict routines, schedules, charts, short-term rewards, comfort items, soothing items, etc).
4. Read books together on dealing with autism, and discuss them with each other afterwards.
We would look up recommended books on autism, either those written by parents, or written by autistic people, or written by psychologists and other experts on autism. Sometimes we’d read these books individually and then pass them to the other person, or we would sometimes read these books together out-loud, taking a chapter each. Either way, we would read the whole book together and then discuss it afterwards. We would discuss what we had learned, what we agreed with, what we didn’t agree with, what was relevant and what was not relevant.
5. Go to meetings, seminars, conferences, talks & workshops on autism, together.
We would look up meetings in our local community, either through our son’s school, or through LADSE, or through our local library, etc. We would attend these meetings together, take notes and discuss them together afterwards. Like the books we read, we would discuss what we had learned, what we agreed with, what we didn’t agree with, what was relevant and what was not relevant.
One fantastic example was a 12-week workshop we attended, run by LADSE, called "Positive Parenting - How to Discipline Your Autistic Child". This was absolutely invaluable. It taught us so much, and gave us so many tools to work with. It was all about approaching our autistic child positively, not negatively. But the key thing was that we attended this workshop TOGETHER. This meant that we could bring home everything we learned, and put it into practice together, and keep it consistent.
6. Try to make friends with other couples/families with autistic children and arrange regular, reciprocal “play-dates” with their children and yours.
Thanks to the meetings, seminars & workshops we went to, we met and became friends with a decent amount of other couples and families with autistic children. We soon found a good community network of people to arrange “play-dates” with. (Because let’s face it, we weren’t having much success with regular play-dates with regular children!)
We would regularly offer to host little gatherings with one, two or several special needs children, at the weekends, allowing the parents to drop their kids off for an hour or two with us. Yes, it was hard work! But, we tackled this together. And it gave these other parents a much-needed break for an hour or two. And in return, we could have our turn to drop our son off at a play-date in a couple week’s time.
This did require a ton of work and commitment. When parents dropped off their special needs child at our house, we made sure they gave us a list of important information:
a) Their emergency contact information
b) What (if any) medications their child was taking
c) What to do to try to prevent their child having a meltdown
d) What to do if and when their child has a meltdown
e) Special dietary requirements
f) Special sensory requirements, fidgets, comfort items, etc
Even though this was hard work, it was a very valuable part of dealing with our son. We learned a lot from other parents about their techniques, and we also learned a lot from the other special needs children themselves. We learned how different they all are, and how they all need different things, but also how similar they sometimes are too, and how we are not alone in dealing with our son!
7. Keep the discipline of your child consistent, with both of you following the same method, and implementing the same techniques.
When it comes to discipline, consistency between parents is so essential! You can't have one parent trying to implement a discipline technique while the other parent undermines it, because they don't agree with it, or haven't learned it. You've got to have both parents on board with the techniques and both implement them together, consistently. Make sure that BOTH of you learn a discipline method together, from a workshop, book, seminar, etc, and implement it together, and support each other in doing so.
Sadly, I remember that my husband and I were almost the ONLY couple attending the LADSE workshop on discipline together. (That I referred to in #12 above). Everyone else there was either a single parent or only one parent came to the workshop, while the other stayed home. My husband and I made sure to get a babysitter every week, so that we could both attend the workshop together.
I totally understand that some parents either can’t afford babysitting, or can’t find a babysitter for their kid. Or that some parents are too busy working, or that some parents are simply not interested. But, we made it a top priority to invest in a babysitter and attend this workshop together. And it was an investment well worth making. It made a HUGE difference in the long run!
8. Have regular family meetings, if possible, at the same time each week.
We would make it a habit to sit down once a week on a Sunday afternoon, at the dining room table, just the two of us, and make it a business-like meeting, with notes, etc! We would discuss our child, his problems, his progress, what we’ve learned recently from our therapist, our meetings, our seminars, our books, etc. We would discuss and decide what tools and tips we’ve tried that are working, those that aren’t working, and those that we intend to start implementing next.
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Looking back, we tackled raising our son, the same way we tackled our main careers, our main passions. It was a full time job. And it required a TON of work, energy and commitment. But, we could not have done it nearly as successfully if we hadn’t worked together, side by side, lovingly, as a team.
And we have reaped huge benefits, as a result!
Summary of our son’s progress
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| Our son Tristan on December 1st, 2024 (age 24) |
Our son was diagnosed with autism at age 3. He is now 24 (he’ll be 25 in April 2025).
He started out with ECE (Early Childhood Education), a government funded Pre-School program for special needs kids, from age 3-5.
He then attended regular main-stream Kindergarten and elementary school from age 5-9 with a full-time, one-on-one aide, and pull-out sessions for physical, occupational and speech therapy.
He also attended weekly private physical, occupational and speech therapy, and weekly private appointments with a psychologist and psychiatrist, throughout his childhood. (He was on 2 psychiatric medications from age 4 to age 18).
He then attended a special private school for high-functioning autistic kids (NCA – New Connections Academy) for 6 years, from age 9-15.
He then transitioned back into regular main-stream High school, at age 15. He continued this High School (from 15-22) with many supports, including a mixture of some special ed and some regular classes, and some pull out sessions for occupational and speech therapy.
He continued his weekly private appointments with our family psychologist and psychiatrist throughout his teenage-hood.
Even though he technically graduated High School at age 18, he stayed on for another 4 years, for their Special Ed Transition Program, from age 18-22.
From age 20-22, he attended BOTH the High School Special Ed Transition program AND Triton College, a local community college.
From age 22-24, he solely attended Triton College.
At age 24, he graduated with his Associates Degree in Graphic Design from Triton College.
Now, at nearly 25 years old, (25 this April), he is currently a full time student at Columbia College Chicago, working on his Bachelor’s degree in Graphic Design. He is on course to graduate with this next year, May 2026!
He has a good group of friends. He now has a girlfriend. He can drive. He has many passions and interests. He works out and does body building. He’s working on writing a book. And he is a wonderful, rounded, healthy, self-disciplined, creative, intelligent, thoughtful and caring young man, who we are IMMENSELY proud of!
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