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Month: February 2019
Jakob was diagnosed when he was 3 and a half. It wasn’t a surprise, I had suspected it since he was 9 months old. This was 14 years ago this month and back then, doctors were hesitant to diagnose before the age of three. So for almost 2 years, all we heard was that he had sensory processing disorder. He was receiving a little bit of treatment for that but nowhere near what we would have done if someone would have just told us that he had autism.
It was frustrating and it honestly felt a bit cruel. I knew something was wrong, we needed and wanted help. The constant delaying of the inevitable gave me false hope. It also made me feel like I was crazy and paranoid and maybe had some psychological issues of my own if I was so sure that there was something wrong with my kid. It was such a scary and stressful time. When the diagnosis finally came, it was terrifying. And it was also a relief. We finally knew what we were dealing with. Well, sort of. We didn’t know how this diagnosis would present itself in Jakob. We didn’t know what kind of road we had ahead of us. We didn’t know anything new really. But we had a label.
I can remember asking the doctor, “Will he ever speak? Will he ever look at us? Will he have friends, go to school, play sports? Will he be able to live on his own or have a job? Will he ever hug me or tell me he loves me? Will he ever even care that I’m in the same room with him?” The answer to all of my questions was the same. The doctor said, “I don’t know.”
At that point, they told me that OT, Speech and Physical Therapy would probably help. They said that there was one behavioral treatment that was showing some promise in decreasing negative behaviors. And that was it. We were told that autism was a “lifelong disability with no cure” and they didn’t know how he got it. We left the hospital with a folder that had a couple flyers and phone numbers in it but no real plan. No clue what to do next.
Dazed, confused, scared, helpless, hopeless and lost. For starts. More emotions than I could count. So many questions. Where to go? What to do? Who to call? How to explain this? How to pay for it? What does our future hold? Where will I find to time and energy to fix this? Can it be fixed? Why is this happening? What did I do wrong that caused this? Will I ever be able to survive this? For starts. More questions than I could count and far too overwhelming in the beginning to find any answers.
It took years before I really felt like I was figuring anything out. It took me that long to find the strength and confidence that I needed to really know that no one knew Jakob better than I did. And to realize that whatever it was that was out there to help him, it was up to me to find it. And that’s when our journey truly began.
Diagnosis day seems so long ago. So much has changed and Jakob has come so far. Aside from an occasional flash of fear or moment of sadness, I’m good. Actually, I’m better than good. I’m great. And Jakob is an amazing, fun-loving kid who speaks, has friends, goes to school, plays sports, hugs me, loves to hang out with me and says “I love you, mom.”
Life with an autism diagnosis has turned out to be pretty awesome. The experiences I’ve had with Jakob have been so rich, so meaningful. My relationship with him is the sweetest and most tender relationship I’ve ever had. The love is so pure. As is his heart.
Time and lots of love and acceptance brings clarity. And I am clear, Jakob and his autism are a gift. The best one I’ve ever received.
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ABC Pediatric Therapy Network is always about progress! If you are receiving services somewhere other than ABC Pediatric Therapy Network and your child is achieving success, DO NOT change a thing. That is what ABC is all about …. SUCCESS! We want your child to be consistently showing progress. We, like you, want your child to reach their maximum potential.
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Testimonial Tuesday! Tell us something great about your child’s therapist!
If your child is not achieving success….at school, home therapy, outpatient therapy…. ask more questions. Ask what the goals are and why your child is not achieving them. Maybe modify the goals or the strategies to achieve them. Is your team on board to create change that is responsive to your child’s needs?! Let’s hope so!
Perhaps now is time for a change.
If you are receiving therapy at school, call an IEP meeting to discuss strategies. You might be able to increase the minutes your child is seen. Maybe you just need to modify the approach to the goal. You could change the location where the goal is being worked on – if in the classroom, try a private room. Maybe your child is being seen in a group and one on one would be better. Perhaps the stairs in the school are not motivating but the stairs to the playground are.
Add additional outpatient therapy to increase the intensity to reach goals. Having another perspective from another therapist can be beneficial. Private therapy is usually individual and this increased intensity might be just what your child needs.
Is summer approaching? What is your plan to push potential during the summer?
Are you at an outpatient facility and your child needs a change? Each outpatient therapy office has a different approach to treatment. Take a tour at another facility to see what best meets your child’s needs.
Therapy…success…change…progress – is all about communication. Your therapy team needs to listen to your and your child’s wants/ needs and modify the plan of care constantly to be responsive to you and your child. If you have found that…great! Celebrate the small victories and push for the big wins! If you have not found that, do not stop advocating for your child. You are often their voice as well as their cheerleader!
*Find the therapy approach – outpatient, school, one on one or group – that succeeds in ensuring your child progresses.
*Increase communication – update or change goals to accomplish more developmental milestones.
*Increase frequency – attend therapy more often or add outpatient to school therapy.
Whatever you do, do not stop trying something new or something different than what you are doing now until you see the progress you want for your child.
You know your child best. Achieving developmental milestones increases self esteem in your child. Feeling like you can do the same tasks as your friends creates a sense of acceptance and achievement.
Empower and educate yourself at www.abcpediatrictherapy.com. Reach out to ABC if we can help you in any way!
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When Jakob was little and the diagnosis was new, the fear was so great that the anxiety, depression and the mere fight to survive was overwhelming. There was love there, so much love, it just felt so out of reach from the pain and suffering of the moment. Thankfully, time changes things. The distance from the most stressful of days has gifted me with clarity. In that clarity, I have found so much beauty. I am now so grateful for the special brand of love Jakob’s autism has brought into my life.
I have a 17-year-old son who will on a regular basis walk beside me and hold my hand through Kroger. Standing at the checkout, he’ll lovingly rest his head on my shoulder. How many typical 17-year-olds do that? Since I never know which time may be his last, I always soak it in, never taking his sweet and tender gesture for granted.
During just normal conversation, he will stand in front of me, look me in the eye, grab both my hands and smile at me. Sometimes he’s talking about stuff that’s a big deal like having to go to study hall. But most often it’s about the simple stuff, like having waffles for dinner. The love in his eyes and the desire to connect melts my heart every time.
We have our own language. We can communicate with each other clearly and concisely while others watch and listen and have no clue what’s going on. He knows that I will always listen and if I don’t understand what he’s trying to tell me, he knows I will keep trying until I figure it out. I love being his safe place and the person he can always talk to about anything.
Recently, he accidentally shaved off his sideburns and that was the funniest thing that happened the entire day. I showed him where hair is supposed to grow on his face and where he needs to stop the razor. It turned into a laughfest that included pictures and texts to family and friends saying “I shaved off my sideburns. Whoopsies”. There’s so much joy in the silly little things.
I think we’ve both learned that everything is little and it’s all silly. Laughter lives large in our home. Being able to laugh at everything has proven to be the best medicine for a kid who struggles to figure out how the world most people live in works and a mom who so desperately wants to help him do that.
Yes, he has taught me patience, compassion, tolerance, kindness, acceptance, perseverance. He has also shown me how to bravely be who I am. This he does by example every day. I have a child who will not conform to what society thinks he should be. How he should think and see and talk and act and be. Jakob is Jakob and he will dig his heels in and fight anyone who forcibly tries to make him be something he’s not. That takes courage and conviction. An incredible example for us all.
Jakob is such a blessing. Every day. He’s my best friend, my teacher, my buddy, my favorite Friday night date, my co-pilot, my navigator, my partner in crime, my joy, my heart, my soulmate, my son. We couldn’t be any more perfect than that.
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The ABC Interactive Screening Tool was developed to empower the parent. We want parents to know what to challenge and when. We do not want your child arriving at preschool or kindergarten not being able to cut, put on their coat or eat the snack provided. What can you, as a parent, do to ensure your child is reaching their potential? The answer…. get educated. We want to help! First, click below to fill out the online screening tool.
Ok, you have filled out the tool. Now what?!?
The tool was designed to be a quick look at how your child is doing. A chance for you to take a look for yourself. Try age appropriate skills with your child to really see for yourself how they are doing.
It is important to understand that this was just a glimpse. A full evaluation of skills at each age level would look at 50 or more skills where this tool only looks at 7- 10 skills for gross motor, fine motor and speech/language skills.
If your child misses 2 or more skills in any one area, we recommend an evaluation of those skills by a licensed therapist. Why? A therapist will be able to teach you what to encourage at home and how. Therapy may or may not be recommended for your child. A therapist wants to ensure that each child reaches age appropriate milestones in a timely manner.
If your child misses 2 or more skills when we are assessing 7-10 skills in the Interactive Screening Tool, we expect that they might miss significantly more when assessing 50 skills in a formal evaluation!
What could happen if my child is behind on skills?
Compensatory patterns could develop if your child is not achieving milestones. Your child may try to figure out how to achieve a skill even though muscle weakness exists. This may lead to the development of bad patterns that will affect future skills. For example, speed and agility for sports may be affected if a child does not develop higher level balance skills like 1 foot standing or walking on a balance beam. A child that does not spend time on his belly may show signs of weakness in his trunk or arms effecting handwriting or scissor cutting later. Children that do not like to climb on jungle gyms or swing on swings might find that riding a 2-wheeler is challenging in the future. This could affect social skills and friends as their friends will take off on their 2 wheeled bikes leaving your child behind to find a more sedentary activity to play.
Why does it matter if my child achieves skills on time?
As a parent, we want our children to succeed at their fullest potential. If our child like Legos or playing the trombone or playing football, all are great. We do not want them to be limited by their motor skills in their choices of what they choose to do or who their friends are. We want them to be able to decide based on their interests not their lack of ability.
For example, if your child chooses not to play sports. That is fine. As a parent, we just do not want him/her not to choose sports due to poor balance or strength.
If your child chooses not to be an artist, we do not want that choice influenced by weak hand/arm muscles. But just that your child prefers something else.
Our job as a parent is to challenge our child at their fullest potential and encourage them to make choices based on their interests.
So get educated. Know what your child needs to know how to do and when. That way you will have the right toys in your house. You will know when to get out the messy glue and paint. You will know when to supervise the scissor cutting. You will know when to leave extra time to “make“ your child tie his/her own shoes or even to be sure they are wearing tie shoes.
Good job parent! You are now educated on what your child should do and when.
Now, pay it forward!
Who else in your world wants to be an informed parent that can empower their child to reach their fullest potential!?! Share this link with them checklist@abcpediatrictherapy.com!
Let’s change the lives of children together!
You will find answers to many of your developmental questions at https://www.abcpediatrictherapy.com
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