Parenting is hard and when you have a special needs child it becomes even more challenging. It was fantastic to have Annie Meintjes join me live last week to talk about the different levels of special needs. It also become very clear how important it is to have these discussions due to the amazing response from the moms on my Facebook page during the video.
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About Annie, Her Son and His Special Needs
Anastasiya Meintjes is a blogger and is known as Annie because of her blog, Sincerely Yours, Annie. She is a stay at home mom of three children, two sons and a daughter. She loves reading, baking and Her oldest son is turning nine years old this year.
He was diagnosed with Aspergers Syndrome in 2017 when he was 5 years old. Aspergers Syndrome falls in the autism spectrum, however this term is no longer used since 2013. It is a neurodevelopmental disorder that is characterised with difficulties in social interaction and non-verbal communication. He does not pick up on social cues, how to interact with emotions as in how to understand emotions and respond in the appropriate manner. He does not understand body language or facial expressions, so he does not understand what the person is expressing in a non-verbal way so he is not able to respond in an appropriate way. He becomes obsessed with topics and objects.
It was a blessing that he was diagnosed early by the age of five in 2017 because it meant that they were able to get the necessary therapy that he needed to start working on coping mechanisms, adjusting to social situations and helping him develop to get him to the age appropriate milestones and school readiness.
Before they got to the above diagnosis in 2016 a different therapist classified him as completely autistic (low functioning autism) which is the complete opposite side of the scale to the later diagnosis in 2017. The report that they received showed the things that he was assessed on and it was the complete opposite of what he could actually do. The therapist disregarded a lot of what Annie told her about their experiences at home. She was told to immediately move him to a special needs school because he won’t be able to cope anywhere else.
Annie did not agree with that diagnosis so decided to get a second opinion. Due to this experience Annie recommends to all parents to get a second opinion to get confirmation of the diagnosis and to make sure that what your child is diagnosed with is truly correct.
They moved him to a different school because they picked up on a lot of difficulties that the school was experiencing. Instead of them picking up on the difficulties that he was having they put him in a box that he was misbehaves and he doesn’t listen. Instead of trying to see why they isolated him completely so he didn’t make any friends and he was bullied.
They moved him back to a school he was previously in and the teacher picked up on a couple of things such as that he had no muscle tone so he could not sit properly and he struggled to hold a pencil because of the underdeveloped muscles. These were things that were not picked up in the previous school.
The teacher referred them to an occupational therapist that started therapy for developing his muscles, working on his grip and sitting. The occupational therapist is the one that informed them that he had a very unstable emotional response. He had very extreme emotional outbursts which is much more than the normal tantrums that young children throw regularly.
They were them referred to a play therapist who diagnosed him with Aspergers Syndrome in 2017, although this is not a term that is used any longer because it was disregarded in 2013 since it falls within the Austism Spectrum. Aspergers is now known as high functioning Autism because individuals can still function normally in certain situations but there are some aspects that they do struggle with.
He also has a speech delay which was picked up by the play therapist and they were then also referred to a speech therapist. This means that they have now had three different therapies and therapists. Some of the therapies interlink but each also focuses on his specific needs.
They have since stopped with occupational therapy as he has developed his muscles and is able to tackle lots of physical activities without a problem, such as climbing trees and riding a bicycle.
With the speech therapy they found that there was a lot of repetition and they chose not to continue after a while since his speech was improved.
They do still see the play therapist every few months, down from every month due to the progress with his development.
When he was in play school they made a decision to home school him, due to the fact that it was not reasonable to expect the teacher to slow down the pace to accommodate all the things that he was struggling with. They wanted to give him one on one attention to help him keep up with the educational program.
In 2019 they registered him in a mainstream school even though the speech therapist advised against it because she felt they wouldn’t be able to accommodate his needs. Annie wanted to take a chance and see what would happen because when she had a meeting with the remedial school (special needs school) she didn’t get the feeling that was where he would fit in.
He is in Grade 2 now, a year behind his age because she did Grade R with him two years in a row to give him a chance to catch up with his speech because he would not have been able to cope with the Grade 1 pressure. They took that extra time to give him a boost and a good foundation for school, a decision she is glad she made.
What The General Public Needs To Learn About Special Needs
There are four major categories of special needs in children:
- Sensory Impaired – sight and hearing.
- Behavioural/ Emotional – ADHD, anxiety and depression
- Development – autism and processing disorders
- Physical – epilepsy, chronic asthma, cerebral palsy, spina bifida, cystic fibrosis, muscular dystrophy and more
These four categories can have different levels of severity and they can mix, adding to the struggles that children and parents face.
It is important to remember that special needs kids are just kids, while they do have special needs that need to be taken into consideration it is important not to talk down to them. They understand but can’t always respond. Talking down to them halts progress.
Special needs is not contagious.
Don’t focus on the child’s weaknesses, focus on what they can improve on and focus on building their strengths. Labels are very restrictive and often come with stigma attached. They focus on what can’t be, not what can be.
Second opinions are very important – make sure to get a second opinion and to also trust your own instincts as a parent.
Jokes about names or disabilities are not ok – this is bullying and very damaging.
A tip from me as a parent that does not have a special needs child is to be aware when you are out and about. Look at children when you are out and be aware of things, especially take note of t-shirts. It may sound strange but I had an experience that sits badly with me to this day.
A few years ago my family and I were on a day trip and while at a playground at a market my kids were on the merry go round with lots of other kids. I was pushing it and all the children were screaming “faster, faster” so I obliged. I saw another child come up clearly wanting to join so I stopped the merry go round and let him on, before pushing it very fast again.
Out of the corner of my eye I saw a clearly distressed mother come running and as a I looked at the children I noticed the t-shirt of the boy that just climbed on. It said “Be Kind, I’m Austistic”. My heart jumped and I stopped the merry go round. The mother grabbed her kid and walked away.
Now I don’t know that much about autism and the do’s and don’ts about merry go rounds with kids that have autism but clearly that was not a good move. I don’t beat myself up about it, because it was not something I was aware of, but I have made a mental note in future to be more aware of these things.
What You Need To Know About Should Schools and Teachers When It Comes To Special Needs
- Before choosing a school you need to think about special needs. If it is severe special needs then a mainstream school won’t be suitable.
- If your child has mild or moderate special needs set up a meeting with the school to discuss. Bring your child’s reports and assessments and be honest about your concerns.
- You need to take social interaction into account, a mainstream school won’t help with speech.
- Not all teachers are equipped to handle the needs of a special needs child, such as how to apply calming methods, sensory overload and disruptions in class.
- Open communication with teachers is always important, but even more so with special needs
- Make sure to find out what therapists are available at the school.
- It takes a good teacher to make a difference – such as shown in Annie’s situation above where the first teacher did not pick up on anything, yet the next teacher did and offered solutions.
- There are not many special needs schools, especially in rural areas. In many cases special needs children can’t be sent to a mainstream school and there is no special needs school available so the children must be kept at home.
- Special needs schools are costly and so is therapy so it can be hard to get your child the right help if you don’t have the finances available.
Do Schools Offer The Right Help and Should They Do More?
It is important to keep in mind that mainstream teachers aren’t there to focus on special needs, so you can’t expect the same attention as in a special needs school.
It is important to have communication and discuss concerns and work on them.
Schools could consider:
- having smaller group classes so that there is more focus
- offer teachers courses that can help them know when there may be concerns
- have therapists at school – less breaks in routine and makes it easier for parents that work full time
- teachers should have levels of training, especially in foundation years
It is important that parents do not put the responsibility on the school alone, parents need to ensure that they are putting in extra effort to help their child not only with school work, but with coping methods and therapy. It has to be a joint effort. It is also essential that parents inform teachers of any changes at home that may impact behaviour at school.
How The Pandemic Affected Those With Special Needs Staying At Home
With lockdown has come a huge amount of upheaval for everyone. With special needs children (and adults) routine is essential, the big change in routine that the pandemic has brought about has brought stress and anxiety as well as loss of access to special needs therapies for a lot of families.
The pandemic has also brought about isolation and families have not been able to visit each other and help each other. There are many special needs children that have little or no support from their school during lockdown.
Routine creates stability and security, this has been sorely disrupted by the pandemic.
Acknowledgement of “Invisible” Special Needs
There are many disabilities that are not immediately obvious and may be hidden, for example a child that has poor eyesight might wear contact lenses and not glasses. There are also many disabilities that cannot be physically seen such as dyslexia or high functioning autism.
It has a very negative impact when people disregard or are dismissive of invisible special needs with comments such as “I didn’t even notice anything wrong with him”, “he looks normal” or “my child also does that”.
Because its not visible people very often tend to think that there are no struggles that go along with it, or they can only imagine the difficulties faced. Here are some of the difficulties encountered with special needs:
- speech delay – difficulty to understand and be understood
- eye contact – people find it rude
- OCD – limited topics of interest, obsessing over topics
- low muscle tone – struggles with sitting, pencil grip, tiredness
- comprehension – understanding and retelling
- cognitive – thinking, remembering, judging, problem-solving
- meltdowns – sensory overload
These struggles impact your daily life, your marriage, your relationship with your other children, relationships with other people, finances and more.
It is so important to be kind and to understand that everyone has their struggles, some are visible and some are not. Neither deserve to be disregarded.
Special Needs and Mental Health
The difficulties that special needs children face can result in mental health challenges.
They often struggle with social interactions, this doesn’t mean that they don’t want friends, it means that they don’t know how. Children with special needs are more likely to become isolated, to be bullied and to get labeled.
Special needs children often cannot understand social cues and cannot see when they are the subject of ridicule. They may not notice when they are young it becomes a big concern as they grow older.
Educational Entertainment To Learn More About Special Needs
If you are interested in learning more about special needs parenting and special needs education here are some great entertainment resources that I love that I am sure you will enjoy and find very educational.
Torey Hayden Books
I’ve personally had an interest in special needs ever since I read books by Torey Hayden, a special education teacher, university lecturer and author of non-fiction books that are based on her real life experiences as a teacher of children with special needs. Her books are beautifully written, highlighting the beauty of special needs children and the struggles and triumphs she experienced in the class room.
Torey Hayden has also written a few fiction books, but the ones based on her real life experiences are the true gems.
Atypical – TV Series
This is a series about a teenage boy that is on the autism spectrum. He is ready to date which means he has plenty of challenges. It is a beautiful, funny, sad and interesting series that give you insight into autism as well as the challenges faced not only by the person with autism but the entire family.
Love On The Spectrum
I found this series absolutely fascinating. It is an Australian reality series that follows young adults that are ready to start dating. It is heartwarming and celebrates differences and love. A show like this goes a long way in breaking the stigma of special needs.
Incredible Special Needs Performances
I love watching shows like The Voice, The X Factor, America’s Got Talent and Britain’s Got Talent. There are some amazing auditions that I have watched that have blown me away. Something that I’ve seen on these shows, and also through the books I’ve read is that there is a beauty in people with special needs and so many special needs people are so artistic and have so much talent.
There are so many where people have a stutter, Tourette Syndrome or another challenge but when they sing or perform suddenly it disappears and you just see this incredibly talented person.
One of my favourite of these videos is the one with Kodi Lee, a 27 year old that is blind and autistic: