I remember the day so clearly, as if it was just yesterday.
The drive home, hot angry tears streaming down my face. The only sound was a bubbling toddler in the backseat. The rest of the car was silent.
We had just come back from the Play Therapist with a diagnosis for Kid1.
He was diagnosed with Asperger’s Syndrome, at the age of five.
The Play Therapist told us that could have been brought on because of the traumatic birth experience I had, where he was severely deprived of oxygen, or it could’ve been environmentally influenced by the way he was treated at his pre-school. We didn’t know about this. He wasn’t able to communicate. She ‘extracted‘ the information during his session with her.
That is where the anger came in. How the school had treated him. The teacher. Instead of comforting him during difficult times, he was pushed away. Each time he screamed and cried, he was labeled as ‘difficult’ and ‘disruptive‘. Instead of focusing on helping him adjust, he was pushed out of groups during class, and even rejected by his peers in his group.
I cannot imagine what he must have gone through. To this day, this anger still rages inside me. On that day, I was ready to go to the school and let them have it. It took HB locking me up inside our home to calm me down, just enough to not act irrationally.
Kid1 was behind on his speech already at that time, and he couldn’t communicate his frustration and anger to us, about his school and the way he was being treated. He responded with tantrums and yelling. We too thought this was just a phase, because kids do this.
It was only after our visit to the Play Therapist that we found out exactly how he was being treated.
The guilt still sits with me today. How he must have felt about us sending him to the school every day; a place he didn’t feel safe and people he didn’t trust, and here we were – parents failing him.
I will never let go of that guilt. It’s my fault as well, adding on to the situation and crippling his world little by little during the time he was there.
We finally had an answer to explain his behaviour. Even though the answer just raised more questions.
What is the next step?
Will he be able to function as time goes on?
Will he be accepted socially?
Will people understand?
So many have labeled him over the years; slow, stupid, disruptive, etc. So much hurt carried over the years. Thankfully, he is still young, and he doesn’t see himself any different to the kid next to him, so it doesn’t bother him. There will be a time in the future though, where he’ll have more understanding and perspective, and this divide from ‘social acceptance’ could affect him. Thankfully he is surrounded by many who love him and who strive to understand him.
It’s been an educational journey. He’s had more therapy, Occupational and Speech, over the years, and his symptoms have reduced significantly. Still, there are some noticeable (and not so noticeable to the naked eye) traits that we work on.
- He is still not on track with his speech, yet he is thriving in a mainstream school: we were told he wouldn’t be able to cope there, they were wrong.
- His emotional outbursts have mellowed down, yet sometimes when he’s extremely overwhelmed, they happen.
- His OCD (Obsessive Compulsive Disorder) has lessened and he doesn’t spend his days sorting objects by colors and sizes anymore, or obsessing with only one sort of toy.
- His eye contact has improved dramatically, even though he still gets distracted easily.
- He has friends, who look forward to spending time with him, even though we were told he wouldn’t be able to make social connections and build relationships.
- He’s able to interpret different emotions and act accordingly, something that is difficult to do for people with AS.
- We were told he would be a danger to himself; not being able to tell the different between a good situation, and a dangerous one. Let me tell you – he’s not the clumsy child in our family.
The point: you can lead a pretty normal life with a child who has been diagnosed with special needs.
I know that special needs vary, and that the spectrum is big. Some special needs diagnosis’s are more severe than others and require more effort and attention to manage. It’s important to look at situations realistically and move from there.
I wanted to share some basic tips about coping with your child’s special needs diagnosis. While I might not have the answers specific to your own child’s diagnosis, I hope these tips will help you ease into the changes in your lives and help with settling the news.
Coping with your child’s special needs diagnosis #specialneedsTweet
Take time to work through your feelings:
There will be many feelings to work through. Guilt, anger, helplessness, grieving, even guilt. Take time to work through these emotions. Don’t rush it, it’s a process as you would with any other situation. Allow yourself to feel, but don’t get swallowed by it. Write your feelings down, and work through each one. If it all becomes too much, consider talking to someone you trust, or a professional.
Learn more about the diagnosis:
By learning more about the diagnosis, your understanding of it will grow. It will help you understand how to deal with certain situations, and ways that you can help your child with their needs. There are many resources available through books and online communities. Your child’s therapist will also be able to provide you with relevant resources.
Ask the questions:
Don’t be afraid to ask questions. By asking, you’re learning and that’s a good thing. If there’s something you’re uncertain of, rather ask and know than leave it and wonder. Each little piece of information will build the wall you need to lean on during the easy and the hard times.
Say yes to second opinions:
If you feel that there was a mistake with the diagnosis, don’t be afraid to seek a second opinion. The very first therapist that evaluated Kid1 when he was two years old sent me his evaluation report and I remember reading through it and thinking, this is NOT about my child. This prompted us to seek more opinions and finally get down to the true diagnosis.
Don’t confuse denial with seeking a second opinion. Instead, give yourself some time to work through the emotion, and if you’re still sure there’s a mistake, then a second opinion could be the next step.
Learn to advocate:
You are your child’s voice. There will be times when you’ll need to step in and explain to others. There will be times where you might be covered in shame and rather make excuses. Don’t let that take hold of you. Learn to advocate and speak up when needed.
Allow your child to be a child:
If your child’s special needs allows it, let them be the child that they are. Let them learn and play, and do things that other children do. While everything might not be possible, depending on the severity of the diagnosis, don’t take the opportunities away from them. Don’t smother them because you think they can’t. Allow them to be independent and grow at their pace.
Connect to other parents:
Reaching out to parents in the same or similar situation as you is good. It will give you the opportunity to connect with parents who know what you are going through and can offer advice to help and guide you. These will be groups who will understand, and make you feel like the earth hasn’t just stopped turning. Connecting with a community will help you find acceptance and not make you feel like the only one going through this.
Cut out the negative:
We tend to focus on the worst than the good. Unfortunately, you will always have ignorant people, but some are willing to learn and understand. Some will just not care. Some will judge. Some won’t make an effort to understand. This is a reality. This is where you’ll need to pick your battles. You won’t always be able to make everyone understand and you’ll need to figure out where the line is, where your line is: when enough is enough. Rather surround yourself with those who make an effort to be apart of your life and not make you feel like a failure than those who will find opportunity to do exactly that.
Give yourself time-off:
Being a special needs parent is hard. It doesn’t matter if the diagnosis is minor; your hard is your reality. You’ll have good days, better days and days you wish you never have to live through again.
It’s part of the journey of being a parent to a child with special needs.
You need to look after yourself too. You need to take a breather every now and then to unwind and recharge. You need to take time out to look after yourself too; mentally, physically and emotionally. The opportunities might be few but when you have them, grab on to them and really use them for your own well-being.
Good luck with the diagnosis. Just know you’re not alone and there are others out there who understand what you’re going through and can help you adjust to this new journey in life.
Tips to help you cope with your child’s special needs diagnosis #specialneedsTweet
Be patience with your child, and be patient with yourself as you both adjust, learn and grow together.
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