When do your kids go back to school? Do you homeschool them or do they go to public/private school? Do you have their supply lists? Backpacks? Do they get new clothes before school, or do you buy through-out the year?
So, your child just received an Autism diagnosis? Are you overwhelmed? Stressed? Concerned? Wondering what to do next? I’ve been there…more than once! Here’s my tips for surviving the diagnosis, and getting to a new normal in your life while raising your special needs child:
1. Be prepared for advice you didn’t ask for.
There are many well-meaning people in your life who will offer advice, even when you didn’t ask for it. Their advice may or may not be appropriate, or they just might not know what they’re talking about (unless they also have an Autistic child(ren). Take well-meaning advice with a grain of salt.
2. If you have someone in your life who has as Autistic child…talk to them about their experience. Sometimes it’s nice to talk to someone who “gets” what you’re going through, understands the diagnosis, and may be able offer some comfort, advice on what Drs to see, tests to have done, babysitters, ect. They may also be able to offer a shoulder to cry on when things get too overwhelming.
3. Use the internet to find parent support groups, reviews on services and/or physicians.
The internet is a wonderful thing! I’ve found many support groups for parents with Autism through Facebook, and a wonderful pediatrician who understands our sons’ condition.
Here are some sites to check out!
- My Autism Team – This is a Facebook like website just for parents of children with Autism.
- Justmommies – They’re a site for moms (dads too!) with forums for various stages in parenting, including special needs.
- Cafemom – Cafemom is sort of Myspace/Facebook meets Forums. You create a profile and join groups (forums) based upon common interests and life stages. I’m a member of Autism Support Across the Spectrum, come join me!
4. Take time to relax.
Parenting a special needs child is stressful. I know…I have two sons on the Spectrum. Find time to relax, do something you enjoy, and be alone. Allow yourself time to concentrate on YOU, so that you can have plenty of energy to care for your child(ren) and other family members. Pour a glass of wine, go tot he gym, read a book, take a walk, go out with friends, order take out and watch Netflix.
5. Consider these options for your child:
- Social Security
- Respite Care – A Respite Care worker temporarily cares for a person with special needs, in order to offer the family/care relief.
I ask her what she’ll do when she meets kids that are different from her.
She said, “Ask them to play blocks with me!”
I have two children with Autism diagnosis’, ranging from Autism Spectrum Disorder with Sensory Processing Disorder to Pervasive Development Disorder – Not Otherwise Specified (PDD-NOS). I feel like the two diagnoses are like night and day, despite coming from the same “family” of disorders.
Jack was is our oldest son was diagnosed with PDD-NOS in 2009. I remember that he screamed a lot the first two years of his life. I remember thinking that he would never talk, and one day he came home from preschool and said, “Love you, mama!” That was one of the best days of my life, a moment when I felt connected to my special needs son, in a way that I never thought I’d get to experience. Jack is now 8, goes to a Gen. Ed Elementary school and has Special Ed support in his class. He articulates his needs, wants, desires, wishes, feelings. If someone asks me, “Does Jack have migraines?” I could honestly say, “No.”, because he’ll tell me if his head hurts.
When Ben was born I remember thinking about how cute he was, what a sweet little face he had. He was a laid back, “easy” baby. I can’t pinpoint a moment when I said, “Oh yes…he’s “different”, or “Autistic”. I just remember that after he turned 18 months old, that things changed. He stopped saying mama and dada…the words he knew were gone. Ben as diagnosed with Autism (educationally) when he was 3. He began going to preschool, where he had OT and PT, as well as speech therapy. He’s now 6 years old. Ben attends school year around, and has speech, OT and physical therapy there too. I can’t tell you if Ben has headaches, because I simply do not know. 🙁
I’ve been busy lately, filling our forms, making phone calls, making appointments…I am hoping to get Ben into more speech therapy, and hopefully ABA therapy too. Jack and I talk about his interests (if I hear one more dinosaur fact…I’ll know everything about dinosaurs..I think), I hear him sounding out words on the cereal box and reading it to his sister. 🙂
Long story short: From my perspective as a mother of two with Autism….I am trying so hard to be a super hero advocate for my boys!
Does your child have sensory issues associated with Autism? If they do (like mine) popular events during the Fourth of July weekend might be a bit tough. We have spent the past 4 years spending time at the air show for the 4th of July. They have hot air balloon races, a Blue Angels air show, and fireworks. The Blue Angels’ put in a wonderful show, but it is VERY loud. During the show last year Ben (age 6 – diagnosed with Autism) had a very tough time with the noise, and with the airplanes in general. We opted to not go to the show this year, but I was thinking I’d share some ideas I’ve found for helping a child with Autism, or SPD (Sensory Processing Disorder) cope with the events of the weekend.
Snug Headphones – Product Description:
As a mom of two Autistic boys, I can understand how frustrating it can be to parent an Autistic child. One of the things that I often struggle with is what to get Ben for his birthday or Christmas. Ben is nonverbal, while Jack is vocal. Jack will tell us what he’s interested in.
Over the years we’ve found a few things that Ben enjoys. I thought it would be a helpful thing to post, as I know I’m not the only one who struggles in the gift giving department for a child with Autism/special needs.
**This post contains some affiliate links. If you buy something that I recommend, you pay the same price, but I may receive a small commission.
Ben loves this..he’ll play with his siblings for about an hour. It’s like Play Doh and sand had a baby. It’s soft and sort of that flow through your fingers type texture with the stay-togetherness of Play Doh. I love it! I find it soothing to play with too.
|Molding the Kinetic Sand with regular Play Doh molds. It works!|
Ben loves this, because he can sit and spin, or tilt and teeter. I don’t have any photos of him using this, as the spinning makes for a very blurry photo. I should do a video! I highly recommend this one if your child is in need of stimulation.
We have both an exercise trampoline (for indoor use) and a large one in the backyard. Ben loves it! He likes to jump, climb and just go out and lie down on it. The trampoline is wonderful, as it helps him to get his energy out.
Ben loves to climb. He’s been a climbing everything since he was a toddler. We have a climbing rope/swing in one of the trees in the backyard. He enjoys both the swinging and climbing. I’ve also noticed that he’ll spend a good 15-20 minutes climbing trees. I am also trying to find a spot in the basement play room for a climbing wall. 🙂 I think he’d love that just as much, if not more.
Ben really enjoys his Kindle. He’ll play games, do puzzles and watch movies.
Summer has begun!!!
Jack is out of school until after Labor Day weekend. He’s now a 2nd grader (how’d this happen?)! Ben is out of school for 2 weeks, until after the 4th of July. 🙂 We’ve spent lots of time outside, jumping on the trampoline and playing with water guns!
Yesterday Marjorri and I went on a bike ride. It was hot for sure, but lots of fun! She was exhausted and we were both really sweaty afterward. Here’s some pictures:
|While we were getting geared up!|
|After our long ride.|
I’m happy to report that I’m back to my post-pain usual self. 🙂 I had a follow up appointment with my Gynecologist and he said everything looked fine. I had the opportunity to see surgical photos…that was interesting. I never thought that my pain (which was a considerably amount of pain that effected daily activities), could be caused by something the width of a shoe lace. He also explained that some of my issues were caused by my bladder being stuck to my abdominal wall. That explains why I was having issues with urination and emptying my bladder. I still have some slight incision pain because of a blood vessel that was cut when the incision was made. The pain is improving over time. I’m incredibly thankful to be pain free. I now have time, but most importantly energy to clean, and goof off with the kids.