Where to begin…

One thing that is common to every family that deals with disabilities is the need for help. It may be help as minor as a listening, non-judgemental ear, it may be as huge as modifications to the home and specially equipped vehicles. In my own experience it isn’t easy to get the help that we need in all instances.

While I have no desire to stereotype or put boxes around our kids there are some kids that are pre-disposed to hidden disabilities that fall into the psychological/severe behaviour camp. These are the kids who have been adopted or in foster care, particularly if they were older than newborn when they were adopted. Unfortunately the attachments that are normally made very naturally during the first three years of life have often been interrupted. Often this group of children have endured some neglect at best and abuse at worst. These things happened and they aren’t your fault, but they are probably going to give you issues to deal with, so don’t deny that they may exist.

  1. Recognize It!!

The first huge hurdle to overcome is recognizing that a disability even exists! While teachers can be understanding they may not be aware of the markers that they should be looking for when dealing with some of these concerns. As parents, we can’t really even expect them to because we may not even be aware that something is going on. You need to be aware of unusual behaviours if your child may have some propensity to issues and then do your homework, know what to look for!!

In our case home education in grade two was one of the ways in which we were able to initially recognize that our son had a learning disability. We had already recognized developmental delays, speech problems and behaviour issues with the help of the school psychologists and therapists, however, our boy was one smart cookie…he has amazing coping mechanisms and we may have gone for far too long before we discovered the issues he had with learning. He could memorize what he needed to, charm and cajole his way into getting the information he needed to make it look like he knew how to read, but he couldn’t.

It wasn’t until we had him at home and I was one on one with him every day that the truth started revealing itself. I dug out the mass of paper that came home with him at the end of grade one in which the teacher, a very good one I might add, praised his progress and passed him with flying colors, and started looking at his work. What I found shocked me. He had actually done less than half of all the written work. What had been done had little pictures and helpful notes in the margins. He had obtained the information he needed to make it look like he could read without actually retaining any of it.

We noted the same issue while trying to teach him piano. We noticed he never looked at the music, only at his fingers. It became obvious when he progressed to playing with two hands together. Extreme frustration sprouted because there was simply too much information for him to process at one time.

*Home education works well for some kids but not for all of them. I would not want to imply that you should home educate your kids, but it may be a strategy for you to consider.

  1. Take Action!

We were able, through the home education resource centre to get an educational psychology analysis done which revealed a profound learning disability. Since then we have had to work hard to get teachers and school administrators to modify his classes and give him the help he needs. He needs a scribe or a reader when he takes exams. He has a very difficult time writing down answers or memorizing long lists of facts. He can’t take in reams of information in a short time. If a teacher hands him a full page of instructions he will freeze up and toss the paper. If the teacher takes the time to read through it with him and point out the important bits, he can cope.

All that to say, you are going to be your child’s best advocate and you will need to work hard to get the help you need both in home and at school.

  1. Use the services that are available!!

Other areas where you may need to go after help is through mental health services or through social services. We are in a unique situation in which we cannot legally adopt our son because of policy technicalities, we do, however, have complete legal custody and guardianship of him and with that comes a social worker.

For twelve years our social workers changed and we never actually met any of them!! Then things took a down turn and we were desperate for help so we finally called Social Services to see if they could get us some help. What we found out was frustrating! There were some services and funding available to us that we had NOT been taking advantage of simply because we didn’t know they existed.

Adoption services also has funding and support options that you may be able to take advantage of. We had not because we asked not, we are starting to ask and find out what is available!

  1. Don’t be afraid of the labels.

Know what you’re up against. Having a proper diagnosis or even multiple ones may be the ticket to getting the help your child needs. Sometimes we want to hold back from slapping labels on our child, however, there are times when those labels will be the ticket to getting the help we need for them. For example, the full assessment that was done for our son through the referrals of our paediatrician to determine problem areas never got to us. Once we were in contact with our social worker and established a relationship we found out that he had a copy of that assessment and we didn’t!!

We got a copy and went through it with a fine tooth comb, it alerted us to the fact that the problem we were suspecting had been suggested way back then…we just weren’t aware of it. My own research and observations had shown that the initial diagnosis that we had may have been incomplete. Reactive Attachment Disorder isn’t easy to recognize because it usually doesn’t exist alone. There are also not many people who know about it or understand it. We had studied it as much as we could after someone had pointed us in that direction. We were pretty sure that was what we were dealing with but didn’t know for sure. Right there in the assessment was a suggestion that RAD was a definite possibility and should be followed up on. How would our lives have been different had we known that when he was five!!!

Summary

Get informed. Ask questions. Get your reports and read them. Talk to people. Find out more!

Once we had the RAD diagnosis we had permission for recreational therapy, more paid respite days and access to counselling that we would not have been able to afford on our own.

Recently we found that there is a disability tax rebate that is available (Canada). We don’t know if we are eligible for it but we are going to research that option as well. Our counsellor wants us to get him reassessed for a particular issue that she feels the doctors overlooked. She also thinks we should go after compensation for the extreme damage to our house.

Our psychiatrist has been helpful in cooperating with us in getting additional help when we have asked.

When it comes down to it, you won’t get what you don’t ask for.

**If you are new here you might want to know that this post is part of a series on hidden disabilities. I am going to be continuing this series for all of October as part of the 31 Days Challenge. You can see all of the amazing topics over at The Nester’s! To go back to the beginning of this series click on the Alphabet Soup tab and you can see the indexed list of chapters.

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About Lani

With six kids, a farm, a ministry and dreams poking out in every direction I need plenty of grace to keep all the balls in the air. The sweet thing is that when I drop them, that crazy grace of God is there telling me I'm still okay...and you are, too...welcome to this place of grace.

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