New Autism Diagnosis? Important Steps That Will Make Life Easier
So you’ve gotten the diagnosis of autism. You’re probably thinking “now what?” as you try to process what that all means. The diagnosis can be scary, heart wrenching, daunting, or a bitter sweet relief as unanswered questions finally make sense. It can be welcomed or unwanted, or depending on the day, it could be both. Every parent processes the diagnosis differently but ultimately need the same things.
I’m sure you’ve seen autism depicted in movies and TV and with the rates as high as they are you probably know someone with autism. You may have seen it, but it’s different when it’s your own child.
My oldest 2 children are autistic and my 4th child is currently going through the diagnostic process (update - he’s been diagnosed, read about here). I vividly remember hearing each of their diagnosis. It’s a life changing moment when your child receives that label. Here are the helpful things I did, what Im doing now and what I wish I knew from the start.
Find a Support Group
When you’re thrown onto a different path it can be lonely; filled with uncertainty, self doubt and heartache. You may feel like you’re struggling along this path alone. Maybe your family isn’t understanding or supportive, or your friends kids seem like they’re straight out of The Sound of Music. You may feel like you’re the only one with these challenges. Believe me when I say that you’re not alone! Did you hear that? You are not alone!
Having children with special needs can be isolating since outings and social activities seem beyond challenging. They may struggle with inappropriate play, rigid expectations, sensory challenges and behaviour problem. It may seem easier to hunker down at home and order in a pizza instead of taking them to a birthday party - yep, that would be easier - and sometimes that is the best option, but trust me when I tell you that isolation is not your friend.
As a special needs parent you need support. You need other parents who can encourage you, share their knowledge, celebrate your wins and comfort you when nothing is going right. You need a tribe, a village, an autism family.
A support group/person can be a local group of moms that meet in person, an online community that you join, blogs that you follow or individuals you connect with.
- Instagram is an easy way to connect with other autistic individuals and parents. Searching hastags gets you instantly in touch with countless people who want to share their experiences. Search #autismlife, #ASD #autismmom #autismparent or anything with autism, special needs, ASD, autistic, etc.
- Facebook has some wonderful groups. The town I live in has a FB group for special needs parents in our community. We talk about schools, where to buy stuff, arrange meet ups, specialists, etc.
- BabyCenter is another useful community of moms. I’ve met some amazing moms there and found comfort and help when I needed it most. I don’t use it much anymore since I don’t find it as personable, but it can be useful.
An unexpected tribe I have is a group of 5 mom friends that live in my town. Together we have a combined 21 kids from ages 2-19 years old. We formed a string quintet called Dolce and we practice once a week after kids are in bed. We perform in concerts, weddings, galas and balls. We each have our own life challenges, including special needs children, and we provide an incredible amount of friendship and support to one another.
Please let me know if you need help finding a support group or need someone with a listening ear. I can help you search FB or do some detective work to find a local group. I’d love to be part of your tribe. Consider me a member of your autism family.
Apply for Funding
Money; it’s not the world but it can make a world of difference. Special needs children can end up costing more money for many different reasons: electronic communication devices & programs, sensory items (weighted blankets, compression vests, etc), chew and fidget toys, long term diaper use, PECS, therapists & specialists, assessments, specific diets & supplements, adaptive activity aides (specialty bikes), more experienced babysitters & daycare providers, specialized school programs, conferences (for the parent), aides for daily living, etc. you get the idea. Those are just some areas in which we’ve spent more money over the years for our autistic kids. I’m not saying this to discourage you, quite the opposite, I want you to feel empowered to get as much out of the diagnosis as possible.
When you’re already going through the emotional and physical exhaustion of a newly diagnosed child money should not be adding to your stress. Having the money side taken care of means you can focus on whats really important, making a life thats best for your child, you and your family.
Fortunately, most places in Canada and the United States have some funding for assessing autism and for helping autistic children. Every state, province and country has different programs and processes for funding. Go to your government website or talk to your health care provider.
Here in Alberta there are many resources to help with the extra monetary cost of having a special needs kid. Here are a few local resources for apply for funding.
Provincial & Territorial Funding Programs for Autism Therapy
Government of Canada - Apply for the Child Disability Benefit (CDB) Disability Credit Canada has helpful information when applying for the CDB.
Alberta - Apply for the Family Support for Children with Disabilities (FSCD). This program has been incredibly beneficial for us and I recommend anyone in Alberta with a special needs child should apply. This is where you’ll get funding for respite, mileage & parking, therapists, family counceling, community aide and much more.
Program Unit Funding (PUF) is funding in Alberta that provides extra assistance in a school setting for children with severe disabilities/delays aged 2 yrs 8 months - 6 yrs. (2 yrs of preschool & 1 year of Kindergarten)
Find Support for the Child
Getting professional support for your child in the early days can be extremely beneficial. Before the age of 6 the brain of a child is at it’s most malleable. It can adapt and learn more in these years than any other years. This is why early diagnosis and treatment is crucial. If you’re child is diagnosed later than 6, don’t be discouraged because not all is lost.
Some of the important professionals for your child could include: speech & language pathologist (SLP), occupational therapist (OT), physical therapist (PT), behavioural therapist or psychologist, autism knowledgable paediatrician, social worker, etc.
Getting support for your child could be getting them into a special needs preschool or kindergarten. Special needs programs will usually provide in house therapists that work one on one with your child. This eases the stress and time consuming process of finding and screening individual therapists. My daughter was diagnosed just after her 3rd birthday and started preschool a month later at Providence School in Calgary. Providence provided free assessments (as long as she ended up attending there) and helped us get funding. Her schooling, bussing and specialist were paid for by PUF. We didn’t have to do much to get her on the right path.
Finding the right professionals to help your child can be daunting. This is another area where an autism community is so important. If you have a local (town or city) support group ask them about the professionals they use, who they recommend, how they found their therapist, who not to hire ;), what to expect, etc.
Take Care of Yourself
Boy, is this an important one. I’m going to write a whole post just on this topic because its a game changer.
When my 2nd child was diagnosed with autism I threw myself into his therapy. I spent every waking hour making flash cards and PECS, organizing therapy games and researching. I was exhausted and burnt out, beyond burnt out, I was ashes. Putting myself last took a real toll on my health; physically, mentally, spiritually & emotionally. I ended up with high blood pressure, debilitating migraines, pain throughout my body, anxiety and depression. Unfortunately, this lasted for years.
Having a child with autism is frequently all consuming and it’s common to put yourself last on the list. As moms we often make ourselves a martyr, desperately hoping that our self sacrifice will result in life changing outcomes.
For me it frequently went like this -
Speech therapist “Some flash cards of common household items could help with Jude’s speech development.”
I hear “you should make a thousand flashcards of items in your home. This could change everything and Jude will start talking if you dedicate every waking hour to this project”……… sigh
While giving your time and energy is a crucial part of parenting it shouldn’t consume all your time and energy.
Before any flight the flight attendants give some wise advice while giving emergency instructions. They tell you to put on your own oxygen mask before helping children or other people with theirs. It’s true in the air and it’s true here on earth. I love this analogy - put on your own oxygen mask first. If you aren’t taking care of yourself how can you expect to take care of others? No one wants an irritable, exhausted, mom monster that hasn’t showered in who knows how long.
Doing a bit of self care does wonders. Find whats important to you and what will help keep you at your best. Here’s a couple of simple examples:
Shower & brush your teeth
Getting dressed in the morning - as in “get out of your freaking pj’s”
Go for a walk
Eat a healthy breakfast
Nurture a hobby - besides netfix ;)
Take a relaxing bath
Have a girls night out
Have a date night in
Journal
Wear makeup or spend time on your hair
Get as much sleep as possible!
Connect with your autism tribe (internet, phone or in person)
Ideally you wont be watching your child while you practice self care, but lets be real, life is frequently not ideal. If you have your kids around put on their favourite show, make a plate of snacks and pull out a bin of exciting toys or activities. This goes for all ages - TV, food & activities - works for my 2, 7, 8 & 10 yr old alike. If your kids tend to fight when put in a room together set up separate areas for them.
If you can get a babysitter then do it! Swap babysitting with a trusted friend, recruit a family member, hire a respite worker, register them in a school program or activity, etc. Appreciate any and all alone time you can get.
No matter how you work it - put on your oxygen mask first and you’ll be better able to take care of those you love.
A date with my husband and our toddler in Canmore, Alberta. A new autism diagnosis can be daunting and stressful. After having 3 children diagnosed with autism I’ve learned a few things. This is my best parenting advice to help you adjust to the new diagnosis with confidence, peace and joy.
Create a Safe and Adaptive Home
Your home should be a haven - or at least as close to one as possible. For a home with autistic kids there needs to be even more attention to detail and extra accommodations made. Even before therapy starts you can help by making the home a safe place for your child and the family.
I know it can be painful but that may include packing away fragile keepsakes or nick knacks, putting plants up high, selling your glass coffee table or putting a cover over your pristine white couch. It’s kind of like toddler proofing but for a little longer.
Autistic individuals often have difficulties knowing what is safe and what isn’t. Safety measures for kids with autism can include:
Fenced areas or barriers to prevent wandering while outside
Extra locks on your exterior doors - especially up high. I know this can be a concern if theres a fire, however the potential risk of your child getting hurt when wandering from you home is much, much greater.
ID bracelets - incase they do get separated from a caregiver
Locks on cupboards and doors that are a danger to your child (especially those with cleaning supplies)
Gates on staircases
Sharp knives, scissors & lighters in a secure place
Lowering the heat on your hot water tank
Having an adaptive home includes finding quiet space where the child can go for calm alone time. Life can be overwhelming and autistic children feel this even more. They need a comfortable space with reduced stimulus - so less noise, people, bright lights, smells & movement.
Solo spaces and activities can include electronics but I like to find screen free alone time activities. My 8 yr old son likes building with lego in his room. My 10 yr old daughter likes reading and drawing in our family room. My 7 year old likes doing pearler beads at the kitchen table. My 2 yr old likes digging in the sand box or playing with cars.
Observe your child and see what quiet activity you can encourage and make space for.
Love
At the end of the day all you need is love. Your child receiving a diagnosis doesn’t change who they are or who they’ve always been. They need your love and understanding just like a neuro-typical kid.
When you’re with them be present; phones away and really engage. Listen to what they are communicating to you, whether it be verbal, body language, PECS, etc. Play games and have fun. Get to know your special child like no one else.
Make their interests your interests and join their unique world. I much prefer my sons Star Wars obsession over his Pokemon obsession but thats not up to me. He loves to share his Pokemon excitement so I’m right there with him.
Kindness may be challenging with a special needs kid, especially when you’re exhausted and at the end of your rope, but kindness is key. Your child needs to feel your love through your words, tone, actions and patience. Be as kind as you can, do your best and be patient with yourself. Love your child, love your partner and love yourself.
via @heartandfond
To Recap
Find a Support Group
Apply for Funding
Find Help for the Child
Take Care of Yourself
Create a Safe and Adaptive Home
Love
Hello!
I’m Kate and I’m a mom of four. Since 2010 we’ve had one baby born with a bilateral cleft lip and palate and three children diagnosed with autism. Parenting certainly hasn’t been what I was expecting - it’s been harder (like A LOT harder) and much more wonderful. My world has expanded and knowledge deepened as I’ve spent the last decade raising these four special kids. Supporting other moms of autistic and cleft children is my passion. Here you’ll find information, strategies and first hand experiences to help you navigate these special challenges on-the-go and in your own home.
Featured
Welcome to Holland is an insightful poem highlighting the experience of becoming a special needs parent. Every parent should read this poem, especially those with autistic or cleft children. Being an autism parent is like living in a foreign land you were unprepared for, but you are not alone, so many of us are right there with you.