Straight Talk On Children's Mental Health

I have been rolling this post around in my brain for several weeks now.   My little homeschool has a secret.  Not an intentional secret that in I purposefully hide behind nice happy little photos of our day, but quite the opposite.

Quite the opposite.

I haven't made a secret of our journey through the waters of our Autism Spectrum Diagnosis with our son Caleb.  I have tried to be transparent with my struggles at various times and points.  The day-to-day struggles, however, have been left in the shadows.

There are so many reasons for this, I can't even begin to cover all of them, but the main one is my growing awareness of the line between our struggles and Caleb's right to a certain level of privacy.  The things I write about him here are very public and he has every right to read them some day if he would like to.

That being said, I often feel as though posts about our homeschool day are slightly tainted.  The pictures in our weekly highlight reels are real, not posed, images of what happens during a school day.  What isn't seen in the picture, however, is the vast amount of  work it has taken to get to those moments.

This is of course true in any educational setting, and documenting them anyway does help with my own record keeping and planning.   For our family, however, the story is a little different based on the high quantity of hands-on assistance Caleb needs during the day.  He is not particularly compliant with either choosing his own work or completely those follow ups and lessons I have designated for him.  If I were to estimate, managing Caleb and his behavior likely accounts for 85-90% of my time teaching each day.  Considering the baby takes up a good solid 5-10%, that doesn't leave much for anyone else.

After a particularly trying fall, we had reached the point where a day didn't pass without thrown things, screaming, and pushing/hitting/kicking his siblings.  Occasional poor behaviors on the part of our other children began to creep into habits.   Schoolwork for other children was constantly lacking.

Something had to change.

As it turns out, several things are going to be changing.

I recently read an article on special needs parenting (can't find the link now, of course, but if I do I'll come back and credit) that said something to the effect of don't over do the focus on the disability.  The point being that every parent and every family can't try every treatment.  While we need to be proactive and knowledgeable, experts are there for a reason and don't be afraid to use them and trust them!  I realized that what I have been doing for the last three years is actually under focusing on the disability.  We have never spoken to even our oldest about why his younger brother is different... something he understands, but we don't talk about.  We don't tell people who might take care of Caleb and we rarely make adaptations for him when we are out and about or visiting.  Forget not apologizing for leaving early or asking for adaptations for an event, we simply went and acted like nothing was wrong....and often paid the price for the stress that caused for Caleb when we got home.

A dear friend who knows a lot about this Autism business suggested back in October that we contact our county for information on assistance for Caleb in the form of a PCA and that has fortunately been all approved and are simply waiting on the final word to hire someone.  They have this whole assessment process and it was eye opening to me to hear just how much their formula says I provide in the form of above and beyond care that which a typically developing child his age would require.  I won't go into the details of the assessment but suffice it to say we qualify for 3.75 hours of care per day.  So change number one is no more wearing myself thin trying to provide for all of Caleb's needs while short changing everyone else, simply so I can pretend that I can handle it all on my own and nothing is really "wrong".  Yes, it would be different if it was just Caleb, but God didn't give us just Caleb, he gave us 4 other children here who also share our home and need our care and attention too.

The second and third changes are a lot harder for me to be at peace at, and yet I find that I am.

When Caleb was diagnosed, it was highly recommended that we address his severe anxiety with pharmaceutical options.  I was hesitant to take this route as there are so many strong opinions about using this medications in children.  His therapist at the time felt that a year to a year and a half of medications in combination with therapy would help him get over the hump (so to speak) and we would be able to wean off of the medications.   Well we did our time, had some ups and down along the way (the biggest down being that Caleb never grew while on the meds), and then weaned off them as planned (followed by Caleb gaining 5 needed pounds within a few months).

Only the anxiety didn't stay low.  The volatile temper and outbursts and screaming continued to grow and grow until I was out of tools to handle them.   When we moved, we came to a smaller area and don't have access to good high quality pediatric OT and sensory therapy which made things even worse.  While flying chars was a contributing factor to our decision to re explore the medication option, the biggest one was when a friend pointed out how infrequently she ever saw Caleb smile spontaneously.

She was right.

While the choice to medicate for mental health issues in children is a complex and challenging one, it is also not one we have taken lightly.  We have faced the stigmas associated with having a child who requires "daily medication" from many places...some very unexpected.   There is this overwhelming thought that children are over medicated so if your child is medicated then they must not need it.   Yes, there are other things we can try first and in combination with drugs, but medication needs to lose its stigma as a crutch for parents who don't want to do the work.   I would do anything for Caleb not to need this medication, but he does and let me tell you why.

Today Caleb found his iPad without a charge.  He cheerfully said, "Ooops!  I forgot to plug it in!"  then calmly walked over the the cord and plugged it in and moved a chair so he could read/play while charging.  A month ago, he would have stomped his feet and screamed at me incomprehensibly that he plugged it in and someone else stole his iPad and played with it and took it out.  He probably would have thrown something at whoever was closest to him when he discovered the lack of charge.   Instead of a half hour or an hour episode or incidence, it was a non issue.   He solved his own problem and took responsibility for the issue in the first place.

I can't even begin to explain how huge this is for him.

Someday I hope that he won't need this medication to help him process the world around him in a more friendly way, but for now I will be grateful that it is available for him and I will cherish every spontaneous smile because in the past few months I have been sorely reminded of those months right before his diagnosis.

I believe the addition of his medication will also be useful in implementing the third change around here.  Beginning in February, Caleb will be attending school all day, every day.  While I was terrified of the evaluation and IEP process, it was a positive experience for us and we are quite happy with the primary special education teacher who will be coordinating his schedule.  The district does not currently have a staff available so they are hiring a para just for Caleb.   Apparently, like the county, they too feel that his needs outweigh what is reasonable for one person to do alone.  

Initially Caleb was unhappy about going to school, but as we have talked about it more he has adjusted to the idea and seems to almost be excited about it.

It took me a long time to realize that while private in nature, we cannot simply hide from this issue.  It is not something that will go away if we pretend it doesn't exist.  Thankfully I have several friends, including one right in town here, who homeschool all but one of their children due to special needs.  They have been an excellent example and source of encouragement to take this step and I'm sure I will be relying on them in the coming months as I learn to share the responsibility of educating Caleb with a new team of people.   I still have in my mind that maybe someday we will be able to bring Caleb home to be with us for school again, but for now I suspect this is going to be a positive change for our family.

(Although... prayers for a smooth transition for all of us would not be unappreciated!)


Lisa Steger said...

Wonderful post Heidi!

Marsha said...

You are brave to share your journey. I'll be praying for your family.

Angie said...

Thank you for sharing Heidi! Count on my prayers.

Abbie said...

You and your family are certainly in our prayers during this transition time and beyond.

You have such strength to write this, and to live this. Thanks for sharing your courage with those of us who need the inspiration.