What Do We Do When Something’s Amiss With Our Child?

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I’m no stranger to having dreams and expectations of my children.  I’ve been doing it for the past 15 years.  Now the key to being a supportive parent is recognizing that our dreams are just that, ours.  That our children are not an extension of us and we don’t get to live vicariously through them.  We can guide them and help them in many different ways, but it’s important to understand that if they don’t turn out how we expected it’s not a reflection on us as parents.  How we handle these things though, that is a reflection on our parenting.

This weekend I watched as another blogger who is quite well known as being a person who likes to stir the pot, really stir the pot big time.  The Feminist Breeder’s oldest son was just diagnosed as being Autistic and it did not take her long at all to not only become and expert, but to also make herself the spokesperson for the ASD community.  And what she is 100% sure of is that we must cure people of Autism.  Not surprisingly people who felt differently than her and who either have Autism themselves or who have been in the Autistic community had a few things to say about this.  Gina, being Gina of course dug her heels in and decided to call these people zealots and tell them that they have “jumped the advocacy shark” which now has the internet exploding.

Now I know Gina isn’t going to listen to anything I have to say.  But none the less I want to share a little story with you.  Because I do think Gina is processing things right now and she’s just not going about it in the right way.  Maybe she’ll come around and if she does I’m sure she won’t apologize for her extreme behavior, but sadly I don’t believe she will.  But none the less I think I should share my story of finding out my own children might have a harder time achieving what I had dreamed for them, not for her but for the next parent who struggles with a diagnosis about her child.

When My Oldest Was Diagnosed With A Speech Delay

Way back in 2000 when my oldest daughter was just 17 months old we had contacted our local early intervention to have her evaluated for her lack of speech.  She was accepted and it spun my world upside down.  I had a million questions and a whole lot of mommy guilt.  Now I know this is not the same as someone who has autism, but I do think we go through some similar sort of grieving process so to speak when we find out something is amiss with our child.  And it doesn’t entirely matter if you suspected something was up or not.  Hearing the words has an affect on us.

So when my oldest daughter was diagnosed with a speech delay I wanted to know why.  Did I do something to cause it?  How do I fix this?  I looked for it to be something specific like maybe Apraxia of speech.  As if having a name associated with her speech delay was going to change things.  You know kind of like when your child has a sore throat.  If it’s strep and she can get on antibiotics she’ll be up and about in no time, but if it’s viral then you have to wait it out and make her comfortable with plenty of rest and fluids.  It’s frustrating when you think your child is struggling and when you can’t instantly fix it.  I mean you’re mom, that’s what you’re supposed to do, make all the bad things go away.

But when it comes to developmental delays and neuro-processing disorders it’s a little more complex.

Now My Daughter Is 14 And Is Doing Great

So for four years of my daughters life we went through speech therapy.  I asked why it was so, I worried when I got pregnant with my second daughter that she would have the same affliction, and I advocated for what my daughter needed to make her speech come along.  And when she was 5 and they said she’s fine there’s no more we can do for her I worried.  I told every teacher for years about her speech delay and asked them to watch for any problems.  And now she is maintaining a 3.5 GPA in her Freshman year of high school, taking 3 advanced classes and planning for her future.

She remembers her speech therapy and I’m pretty sure she doesn’t look at it as something she wishes she didn’t have.  It has set her on a certain course for her life.  And as I think I’ve mentioned before, I do wish all kids could receive speech therapy.  But it took me a while to come to that realization that it’s okay that there’s not a cure for everything.  I do still hate viruses though.

As Time Goes On

We all have an ability to come to terms with things.  Once we see the look on our child’s face when she accomplishes something that was once hard for her to do we begin to see there are benefits to things.  But even if we can never find a benefit to the struggles that our children go through it’s not always our place or within our ability to fix it.  It is our place and within our ability to always always advocate for our child.  I do hope Gina’s “jump the advocacy shark” does not mean she’s over advocating for her son because it has only just begun.  The reality is there is no cure for autism.  The fact that we are seeing more and more people diagnosed with autism does not mean that it’s due to environmental factors of some sort.  There likely is a genetic connection which means Gina might come to find that one of her other children is autistic as well.  If a “cure” is ever even going to be possible it’s likely not going to be in our lifetime or in our children’s lifetime.

Advocacy is what we have.  We can’t get “over” that.  We can’t ignore it and dig our heels in about a cure.  We have to work with what we have and we have to take our feelings out of this and put our child’s needs ahead of anyone elses.

I will always advocate for my children’s education and for them to get the help they need to help them be successful in the area they want to be successful in.  As many of my readers know my middle daughter has an IEP for reading.  I pushed very hard to get her tested and get an IEP in place so she didn’t continue to fall further and further behind.  There’s nothing she needs to be cured of, she has her strengths and she has her weaknesses.  None of those are going to stop her from pursuing her dreams.  Whether it’s to become a hairdresser or whatever she chooses to do.

Bottom Line

In all of this, no matter if you’re just starting out on a journey with your child, or have been in it for years there are three important things to remember.

1. This is your child’s struggle or blessing, not yours.  Your job as her parent is to help her navigate life as best as possible, but that’s always been your job.  But what you think might be the best way to handle things when you start out in the journey with our child, you might find it not the best.  You might even begin to see blessings that you didn’t see in the beginning.  Which brings me to my next point.
2. Don’t ever burn bridges along the way.  Whether it’s another parent who has been in this for a while, or an adult who can give you the unique insights of what your child might be feeling or the school system itself.  You need to learn how to speak on behalf of your child and you also need to help your child advocate for herself because you can’t always be there making sure the IEP is being followed by the school in the day to day stuff.  There will come a time when you have exhausted all possibilities and you will have to cut your losses and try something new even.  This will all come from understanding that you don’t have all of the answers.
3. Don’t ever ever ever allow your child to even remotely think that you think there’s something wrong with him in anyway.  Kids are more perceptive than we may think though so always let your children try things they want to try even if you think they’ll struggle with it.  Play to their strengths too.  My middle daughter loves art so we found her an art school.  While academics are still very important she gets just as much time to work on the arts which is like a reward for her hard work.  And believe me, you will not see another child work as hard as her through the areas she struggles with.

If you have a child who was diagnosed with a delay or a disorder of some sort how did you handle it?