Milo was diagnosed with autism at 2 years and 10 months. The diagnosis didn't come as a surprise us as we had previously been reading about autism and knew that Milo had it.
As a baby he wasn't that interested in holding your gaze like other children, and as a toddler would spend time lining up shells and empty Easter egg plastic shells. He was also a late talker and the words he did speak were often repeated words which is termed echolalia. He was also very bright and knew the alphabet very early as well as learned to read early. But it was numbers that he loved the most. Math is something that always came naturally to Milo and something that is common for those with autism. One day when Milo was 2, a friend was over and observed Milo playing and lining up and mentioned that that wasn't normal play for his age, which took me completely by surprise as I knew nothing about the condition before that. From that point on we started researching autism. It was a stressful time, but I knew I had to do something to help him and came across Stanley Greenspan's developmental intervention DIR/Floor time. This struck a chord with us as the parent/s could do a lot at home helping their child reach developmental milestones through play. Letting the child lead with their interests then slowly expanding their play to try and reach the 6 developmental capacities which are:
1: Self-Regulation and interest in the world
2: Engaging and relating
3: Purposeful two-way communication
4. Complex communication and shared problem solving
5: Using Symbols and creating emotional ideas
6: Logical thinking and building bridges between ideas
These can be worked on using play. It required about 8 sessions of 20 minutes a day which was necessary to help make gains in his development but was exhausting too. We started using these strategies a month or two before his diagnosis but at first it was hard to know if we were doing it correctly so a couple months later we hired a Play Project consultant to help us use some Floor time strategies to be more effective with Milo during these sessions.
In addition, I looked for and found a Floortime certified Occupational Therapist he could see, and found one at the Children's Therapy Unit in Puyallup, so he started seeing her a couple months after diagnosis and she was an incredible help and would coach us in Floor time as well as our Play Project consultant. Milo still sees his OT at CTU to this day.
In addition to OT therapy he also started seeing a speech therapist once a week.
Gradually we saw Milo engaging more with us and moving up some of the developmental milestones. We would work a lot on pretend play which was always the hardest for him, and he would never normally initiate this play himself. As this was something he didn't do as much of when he was young it explains how he continues to still struggle with comprehension as pretend play is the foundation of reading comprehension and in addition; pretend play has many benefits for social development, which is why it comes harder for some with autism. However, he would do some pretend play (mostly with me, and occasionally by himself) and would show flexibility and more engagement.
Children with autism like to engage in perseverative and repetitive activities, one reason is it can help them self-regulate and soothe themselves and they need some kind of sensory input to cope. Milo was no different with this, but he would do it less as he came out of his own world more. Milo found it easier to engage in more structured play. He loved playing board games, and this was another way to engage him. He learned chess pretty young which he still plays now and has since won a trophy at every tournament he has been to.
Milo has been attending school since he was 3. He first started at a developmental preschool 4 afternoons a week, then the year after he was still in that school and I also enrolled him in a regular morning preschool, so he could get more typical peers around him. Social interaction with peers has been a challenge for him. He would rarely engage verbally with peers and only parallel play with them. Collaborative play (especially with pretend play) has always been challenging or mostly non-existent. The reason those with autism struggle as they enter school is they often haven't learned the 1-6 developmental milestones that typical children would have learned coming into the school setting in order for them to engage with peers and take part in activities.
Thankfully for Kindergarten Milo was accepted into the EEU which is the University of Washington school for special needs kids. It is a superior school with great support and teachers and where children with special needs can also learn alongside typical peers in their class. Milo had a great year there and then moved onto this current school: Pathfinder K-8 in West Seattle. This option school which is part of Seattle Public Schools has a slightly higher number of special ed students. As he entered 1st grade though there was a lack of support compared to the EEU and he was in Gen Ed with resource room so did not have a lot of aide time overall.
Navigating the school system is often challenging and takes a lot of advocating to get the care necessary. After the end of his 1st year there we decided to hold meetings, so he could repeat 1st grade as he made limited social progress that year. All the teachers dissuaded us from doing this, but we held our ground and they agreed to let us do it. It made total sense as he was a very young Kindergartener and we would have had him do one more year in preschool but as he got into the EEU we decided not to. It was the best decision we made as his 2nd year of 1st grade was so much better, and he made two friends in that class that he still has today.
In second grade they brought the Access Program to his school which means he has more aide time and a bit more support in the classroom. During his time at Pathfinder he has been blessed with really supportive and experienced IA's and speech therapists and his Gen Ed teachers have also been pretty good. He continues to do very well in Math, and is an excellent speller with good penmanship. His challenges continue with making new friends and engaging with his classmates as well as executive function and reading comprehension.
Advocating is always a key part of supporting Milo through school and its often making sure the special education department is following through on the goals and minutes received in his IEP. It's easy as a parent of a special ed child to seem like the intense annoying parent, and it takes learning to get the balance between requesting for feedback and sharing info and having an amount of trust that they are doing as much as they can be. There have definitely been some difficulties with this during his time at Pathfinder and advocating continues to be a learning experience.
There is always an underlying stress involved in bringing up a child with autism and I would say the biggest challenge with Milo is life at home with him. He is now 11 and in 5th grade and as he gets older the challenges seem to increase. He is a compliant child at school but at home it's another story. He knows he can "let his hair down" and be himself and so is always testing boundaries. He was also diagnosed with ADHD a few years ago so parenting a child with multiple diagnoses is much more stressful and requires more specific tools.
Milo has many talents. He has been playing piano since he was 4 and has perfect pitch. He is a great chess player and also an artist. He loves cars and that interest led to him making car paintings. We turned some of these into posters and he sold many and also made commissions for people in the last year as well as has his own greeting cards with another company. Milo often goes through phases though, and will be really into something for an amount of time then move onto something else. His specific interests can end up being very productive (like the car painting business) or of a more repetitive or hyper focused nature and trying to encourage him to do more variety often comes with resistance.
On the subject of behavior - he will often do things he shouldn't and also be very impulsive with a lack of self-control, then be told not to keep doing something but keep doing it anyway. And also do things that he 'seems' to know can be very annoying. One issue with that is not being good at perspective taking and understanding how his behavior affects others. He is able to see how his peers behave and if they act out at times but not as good at seeing it in himself.
He will also over react to very small issues, like not being able to find something, or if there is any kind of small issue that makes him uncomfortable. Some of this is caused by his difficulty with solving problems and executive function as well has his emotional challenges.
This inability to determine between big and small problems causes his response to be too big to a small problem. In fact, dealing with any kind of anger still mainly comes out in actions rather than words. Stomping feed hard, or trying to pinch me or push me.
These things are very discouraging and concerning considering his age and how he will function as a teenager going into adulthood but is something I continue to try and help him with using tools learned at social groups with therapists, involving daily discussions about how he can work on using words and calming strategies. But it can be slow progress.
As a parent it can be easy to focus on the challenges and negatives too much rather than seeing the many gains and positive stages in development. Milo for sure has worked hard and made incredible progress through the years and there continues to be some wonderful and encouraging times and moments. These progressions can sometimes be baby steps and for any parent bringing up a child with autism it involves patience, love, time engaging together, using targeted tools and having enough support and coaching from others.
I am not sure what the future holds for Milo, but I pray and hope he will grow up to be a healthy, independent and functioning adult, who is able to have meaningful relationships with others.
For any parent, it's important to take it a day at a time and take care of yourself so you are able to put the necessary care into supporting your child progress, grow and reach their potential.
--Sarah Wright
You can follow Milo on his Instagram page: @mwpaintings
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