Diagnosis

February 15, 2014 § 6 Comments

Really in my heart I don’t think you could possibly understand unless you been through it. I don’t think you can possibly understand what it is like for a family to receive a major diagnosis for a child. I am talking major life changing diagnosis, all encompassing.
Whether it be medical or developmental or in my child’s case, both, it rocks your world.

The old poem of “Welcome To Holland” becomes your reality. How did I get here?

Educators, early intervention providers, therapist, family members – judge – yup they do – they watch to see how you handle it – THEY decide if your being reasonable. They begin to tell you all the things you should be doing – and you try ….. Until … There are simply no more hours left in the day, until every daily activity becomes an act of some form of therapy. That’s when many of us sort it out that no one therapist knows what every other therapist is telling you to do and that no one could ever keep up with the expectations. If you’ve had an early involved diagnosis you know exactly what I’m talking about.

Then our kids go to school, we are told we will have to fight, we are unsure what for but we know our mama bear selves must prepare. And then it begins….

All over again with the judging, therapies, “homework” and trying to do what’s best ….. And we try and we try…. And it’s exhausting

It affects every family member.

At school what the staff doesn’t realize is that although your kid is only in preschool you’ve already been through the ringer and so has your child. We walk through the preschool doors after our early intervention testing not as excited new parents but already anticipating the judgement, the fight and being told that someone else knows best for our child.

I suppose I sound bitter – I’m not, well maybe a little. The truth, the bottom line for this post is for educators and therapist to remember that when dealing with involved diagnosis and parents who have been around the block before their child enters preschool – you might want to think about putting on a different pair of lenses and realize that we are approaching from a different point before we even arrive.

The worst part is those who are judging now reading this – go ahead – I’m used to it – but really you will never understand what it is like to educate a child with involved needs until you’ve done it. Oh and yes need I not forget the blessings that come with all this but that my friend is another post all in itself.

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§ 6 Responses to Diagnosis

  • Shawn Rouillard says:

    Well said Michelle, that is the most difficult part of raising our children, the judging. The judging our children get from their peers, the judging we get when we do not agree or we push back too hard against what we feel is wrong!

  • Olive Davis says:

    My daughter is doing her 15th year in school. In this country that is law. Your child with disabilities has the legal right to attend school until he/she is 21 years old. We did our duty in that regard. We are exhausted in every way. We have run into all kinds of obstacles and the biggest being total ignorance not so much from anyone other than some staff who have worked with our daughter. We made complaints and they are still there to abuse, ignore alienate and ostracize not only our daughter but us her parents. Yes she needed an advocate and I tried but the sad truth is I am so exhausted from trying to do what is right for my daughter I’m thinking she would have been better off if we would have taken her out years ago. Or better still kept her out all together. Things I have wittnessed and reported was never dealt with. I take my daughter to school every day and leave her with people who should not be there. I don’t think I should have to remove her because of how a worker feels about her. I think the worker should be removed and replace by some who feels that my daughter deserves to be there . I feel every time I drop her off what does she endure? And what kind of a mother am I to leave her with someone like that. Then I am assured that she is fine. Is she really? Every day I feel like taking her out of school. Every day I bring her back because it is her right. Does she feel as unwelcome as we do in that school( the school we grew up in and attended) our school. We have no choice but trust them. But we don’t. How could we? It is a cruel world. I am expecting total ostracization once this gets to even one person in our school. Why? Because right or wrong they support each other and we have no support system in this place. This is how we have lived for the past 15 years. The last 3 being extremely and almost impossible for us to endure. Sorry folks but this is how I see it. Whatever happens happens. I did my duty. I will be condemned for it because I stood up for my child. My heart is broken but that is my life.

    • Successful Exceptional Education (SEE) says:

      Wow!!! What amazing and powerful words you wrote!! I can’t imagine your exhaustion and I know exactly what you mean by this. And it’s such a feeling that when you actually fight for your child you can never really win because of all the crap behind the scenes! How to make schools honest ?!? How do we make them transparent?!? How do we really make sure out kids are getting a free equal and fair education? If we are putting in double time as sped parents and spending money hand over fist on outside services and advocates – is that fair and equal?

  • Olive davis says:

    I don’t have the answers. I wish I did. I don’t want to discourage but this is the reality we have lived. One thing I do know is parents of special needs children need to support each other, and lift each other up, encourage unity, and persevere for their children and themselves. You have to have some kind of a support system or it can become overwhelming. Before I joined the WS support groups I thought there was nobody who could relate to us and we would never find anyone who could possibly understand what it is like to raise a child with multiple disabilities. We live in a little community where there are very few families such as ours and there has never been anyone in our school who needed supports put in to accommodate a child’s needs. So we fought for her and consequently became terrible people in the process. No we are good decent people who became victims of circumstances beyond our control. We love our child and like most parents, would walk on hot coals to get her whatever she might need. Some people make it personal unfortunately. I hope the next chapter in our lives will be better for all of us especially our pride and joy, our daughter. People with healthy “normal” children have so little to complain about compared to …….. They have no idea how fortunate and easy they have it…..compared to. My rant that I was terrified of ranting about,but just did. Forgive me for using your blog to vent. I know you are one person who has deep insight and understanding. You may have helped me more than you could know. Thank you..

    • Successful Exceptional Education (SEE) says:

      Write away!! Chances are you are helping someone with your posts on here! I thrilled to hear what you have to say! Xo

  • Olive davis says:

    Thank you.

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