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judgebrix · 4 years

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We love our son with all our hearts. We would not jump in the DeLorean, turn back time to when he was conceived, and change anything. He has brought tremendous joy and happiness to our family. He has taught us ways to love and communicate, and his love for the family shines daily.

People who have met him through school, scouts, friends and work all share the smiles that we have received from him over the years, and they all see his personality shine through.

Our son is born with Down Syndrome, and a few other enhancements. A little sprinkle apraxia and perhaps a dusting of autism. This becomes an interesting mix of skills and challenges, but none of these have really held him back. It is probably more us parents that set his limits, but he knows when something is outside his comfort zone … or if it something he absolutely does not want to do.

The biggest challenge we have is that he has very limited verbal communication. In fact, he will not say a sentence and has difficulties articulating sounds and words. We’ve been told it is because of the apraxia, and that it may never really evolve.

That is hard for us, and I can only imagine, even harder for him. We can tell that he wants to say something, and he does try, but it is very hard.

The school and his team have been excellent in supporting his needs. A couple of years ago they installed some speech software on his iPad, and that has now allowed him to communicate a little. He can construct simple sentences asking for food, drink (juice), watch a movie; and he can also express his feelings.

It is wonderful to “hear” him speak through an iPad, as it shows that he understand what we and the teachers are saying, and he can gain a little indepence.

We would love to hear his voice ask for the same things. It would mean the world to us if there was some magical medical procedure that could fix his apraxia and help him develop.

Some days, I see him as the Little Mermaid who lost her voice. One day he will regain his voice, and then there will be no stopping him. He would have so many things to tell us, and we would be able to finally hear simple words like “mum” and “dad”.

He’s almost 15 years old and it sometimes breaks my heart that he cannot communicate better with his friends at school and scouts. I can tell he’s desperately trying to, and sometimes the other boys walk away before he gets to try harder. All the boys at scout have been phenomenal, and he absolutely loves to hang out with them – even if he cannot do the same physical activities as they can.

Despite his speech challenges, he is doing very well and we support him with everything he does and want to try.

Yes, it is hard at times to be a parent of a child with special needs. You can’t explain it to other parents, and I dislike when some parents look at us with sorrow. It does not happen often, and all our friends (and their kids) have fully embraced our son.

That is what warms my Viking heart, when I see him walk over to other parents to say hi, and they talk to him, well knowing that he rarely responds. That’s not the point either, it is more the fact that they talk to him, and don’t walk away or ignore him.

Will he ever be a scientist, a solider, a lawyer, a teacher, a chef or plumber?

No, and we know that. We just want him to enjoy life and live happy.

We worry for when we are gone and there are no one to look after him. While we know his sisters will look after him, we don’t want them to live their lives for him. They have their own families. On the flipside, we are scared for what will happen when he becomes an adult and finishes high school.

Will he have a job?

Will he have services available?

Will people around him treat him well?

Will he understand life and challenge?

It makes me sad to think about these challenges that he might face alone, or in surroundings where he’s secluded from society. Imagine him in a home or facility somewhere, sitting in his room with no social interaction. I fear the future for him, without his family around him 24/7.

We will make sure he stays with us, his parents, as long as we live.

It scares me when illnesses circulate the World like COVID-19, especially as we read and hear in the news that people will special needs will not received assistance. “Normal” people will have priority over special needs.

Then I get encouraged when we read wonderful stories about people with special needs who survive COVID-19. They do get help and support.

Do we have other challenges?

Absolutely – any parent with teenage kids have challenges 🙂

During COVID-19 lockdown, homeschooling is proving to be harder. We, as parents, try our best to educate him with the materials we receive from his special (hero) educators, but we are not trained to address his needs. The teachers are doing the best they can with the tools available to them, but most kids with special needs suffer more during the quarantine as they often need more educational support and skilled training, which parents cannot provide.

There’s a high risk that our son will regress, but I’m also confident that his teachers will do everything possible to get him back again, and more forward again.

I do know that when they do return to school, and if they have to adhere to all those insane rules that the twat Cuomo is trying to push out, then special needs kids will struggle further.

Many have sensory issues and cannot (will not) wear masks.

The are loving and do not understand the concept of social distancing

They have multiple special services, and cannot be with just one teacher

They thrive on meeting other kids in the hallways

Again, these are things that other parents might not recognize or understand, and simply say “well, they got to adapt!”. It’s not going to happen – it’s a fact.

We have been lucky that we never had to fight with the schools about his IEP and meeting his educational needs. His team has always been super and very supportive.

I also believe it is because we make it a team exercise, and not teachers vs parents. We accept that we might not receive all we think he needs, but we talk about solutions with the team, and we come up with alternatives. At the same time, the school team listen to us parents to better understand our son’s needs. This is vital to ensure that you get what is best for your child.

IEP is about building a plan that is best for your child’s educational and development needs. It should not be a forum where you (as parents) demand some outlandish or unnecessary services that will not promote or support the child’s development. We hear stories about parents demanding too much, not willing to negotiate or listen, and then they end up in court. They fail to understand that they need to support child’s development needs.

And yes, some schools can be very difficult to deal with, but I firmly believe that these barriers can be torn down if we all are on the same team and discuss the options, and then develop a plan together.

Overall, the last 15 years have been very illuminating for us parents and his sisters. He has taught us ho to love and he spreads laughter.

Why this post?

I just want to share our side of the story and how we live with special needs. This is not the same story for all families with special needs. Each child is different and have different needs. Some might struggle, but we don’t.

Our Viking Son with Special Needs We love our son with all our hearts. We would not jump in the DeLorean, turn back time to when he was conceived, and change anything.

#COVID19 #Down Syndrome #Education #Family #Kids #learnings #Life Lesson #Musings #Special Needs #Special Olympics

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